5:05 AM 1/2/2007
Happy New Year! As I sit and reflect upon what to write about this morning I just can't make up my mind. It is a new year and the thing that I love about them is the fact that they give me the chance to reflect on a year gone by and use what I learn in the year to come. Last year was a momentous year for me. I think most of it can probably be attributed to Sydney's journey but I think I am becoming happier than I ever have been before. I am finally coming to terms with who I am and what I am capable of. I have come closer to really identifying what is important in life. This is the first time in the history of my world that I have been able to do it while not facing some trauma. I have to thank Sydney for that. With all that she has endured over the last 3 and a half years she has not only made her self stronger but she has made me stronger as well. I am so much more appreciative of what I have.
Sydney has grown as well. The last two or three weeks of Sydney's 2006 saw her changing in ways that we never expected. It is clear that her change is far more impressive than mine. If you take a moment to look at her year you really have to be in awe. In all due honesty, I think she has grown more this year than in the last 4 combined. She is truly coming in to her own. Of course, with that, it also comes with its own sort of challenges. I will give you an example of the transformations that I am seeing.
As of late Sydney has been very interested in puzzles and figuring out how things work. The truly odd thing about this is that it is completely contrary to what we have come to know about her in the past. She has always been one to frustrate easily and whenever she has been in the midst of a mental challenge she has always found a way to throw her arms up and quit. Quite frankly, I was concerned about it. I thought that through years of therapy we must have forgotten to focus on this very important life skill. We surely must have coddled her too much. I have always been at the complete opposite side of the spectrum. I cannot step away from a puzzle until it has been solved and I do not give up. I become obsessive and will stop at nothing until I solve my own little mysteries. I have always worried that I failed to enforce this tenacity and stick-to-it-ive-ness in her.
Well lately that has changed. I have found her spending hours at single tasks trying to figure out how they work. From putting puzzles together to taking apart flashlights and putting them back together the end of last year has brought many examples of her commitment to finishing jobs through and taking the time to figure something out instead of just giving up. For Sydney this was an enormous shift in who we believed her to be.
Upstairs in her bathroom there is a lock in the door. We live in an older house and the locks on the bathroom doors are circa 1940. The first time I had seen these locks it even took me a while to figure out how they worked. In fact, for the longest time, I did not even realize that they locked at all. It was until one day that I began to play with the small hidden switch underneath the handle that I realized that it locked the door. The kids have always been amazed at how I could magically lock the door. None of them could ever figure it out and mostly they eventually just became frustrated with it and came to the conclusion that I must be doing something else to lock the door. This was a handy feature because I could lock the door to their sister's room in the bathroom and keep them from sneaking in and waking her up. Yesterday Sydney spent a good 30 minutes with that lock. She studied it and tried it just about every way that she could. The locking mechanism was so stiff she even had to craft her own tool out of the back side of a pen to make it work. But, she did eventually make it work. She came running down stairs to get me to show me what she had accomplished. She had indeed. She had seen through some of her Daddy's magic. She is growing up. I was so proud and also a little saddened that I could no longer fool my little girl. Daddy had lost some of his luster.
Later that evening after everyone had gone to bed I heard Sydney whispering. I snuck into her room. It was empty. I then went into the bathroom where I found the door to their sister's room unlocked. I opened the door and caught them. They looked at me with that dear in the headlights type of "oh sh$%, I am I going to get in trouble now" look that lets a parent know that they have won the battle before it even began. She was so caught and she was doing exactly what I told her never to do. She looked at me in awe, wondering how I knew she had snuck in there. I told her that I still had plenty of magic up my sleeves. She new exactly what I meant and I had finally figured it out.
My purpose is my magic.
4:57 AM 1/3/06
The kiddos are still on vacation but it was a day back in the grind for me. Yesterday was actually quite a treat for me. In the afternoon I had the opportunity to talk with Dr. Sholler, a neuroblastoma researcher and oncologist from Vermont. A great thing happened in 2006. I don't know that it will ever be written about in any annals of modern medicine but it was important to kids with cancer. One of my biggest frustrations with neuroblastoma has been the lack of quality therapeutic options for children with relapsed neuroblastoma. Over the last few years I have seen a couple of new concoctions come down the pike but there has been very little to become excited about. Most of the options continued to be the same single agent trials that we have seen before. The frustrating thing about single agent trials is that we really know that they aren't particularly effective against neuroblastoma. The majority of what we see are trails that offer a great scientific question are potentially really important data in the future but that provide little or no hope for those that are in the midst of battle right now.
The trick is to create phase I and II trials that are not only aimed at answering scientific questions but that also provide hope for the kids that need drugs now. This is where my story comes in. I have spoken about Nifurtimox before. This was the drug that Dr. Sholler "discovered" while treating another patient. All of that is fine and dandy but the important part of what she has done was to get it to trial (a) quickly and (b) paired with drugs that could almost guarantee some effectiveness. It was the combination of Dr. Sholler and 2 other dads of children with neuroblastoma that not only got the trial up and running but did it in less than a month. The other really cool thing that they did was that they paired it with other chemotherapy that was already known to be some of the most effective. In essence, they paired the scientific question (the drug) with known quality salvage chemotherapy. Now, anyone that relapses can not only get the benefit of a therapy that works fairly well but the potential benefit of Nifurtimox which could make all of the difference in the world. In this sense, who would not at least try it. As with any potential treatment there are potential side effects with new agents. Nifurtimox could come with some neurotoxicities. However, the endpoint of standard Cytoxan and Topotecan is relatively known. Most will eventually progress. Nifurtimox at least holds hope of extending that time or providing enough time to bridge to another therapy. For chemoresistant tumors it could mean the difference between responding and not responding at all. In my mind, as a front line relapse therapy it has to be a significant consideration.
The point here is that a group of parents and one oncologist with an open mind created these changes. Normally this process would have taken years to complete. Many would have designed this study as a single agent and it would have spent forever waiting to accrue participants when we all knew that the efficacy would have been questionable. This act saved lives and while I don't think anyone can guarantee that Nifurtimox will increase the odds of surviving the disease it certainly seems a better alternative to what is already known.
That is the kind of purpose I am talking about.
4:17 AM 1/4/2007
They say time heals all wounds and perhaps that is somewhat true. Sydney certainly seems to be doing very well. Thankfully she is slowly morphing into normal kiddom. I on the other hand am not so pliable. I still think about neuroblastoma every day. The difference now is that I chose to remember it. It has not been because it has been forced back into my life. It is a constant companion everyday but it isn't from fear of disease but rather the memory of fear. In this sense it is quite pleasant to say neuroblastoma out loud without have my stomach immediately roll into knots. Even the moments of true fear get further and further apart to the point that it becomes difficult to remember what they were like. In this sense it had been the study of neuroblastoma that has kept me feeling alive and kept the importance where it should be.
And then there are nights like last night. We were all sound asleep when Sydney began calling out in tears - "Momma, momma" That sound in the middle of the night is the one we dread. Almost immediately our bodies filled with fear. Adrenalin rushed into our bodies and although we were moving quickly our psyches were frozen in an anxious fog. In the 5 or so seconds that passed between the time that we awoke to her shrieks and the moment we got to her bedside every emotion that we have ever felt about neuroblastoma returned to our bodies. We were quaking in fear. We were shaking in terror. We were rattled with horror. We were, once again, faced with the very life of our daughter. The feeling is hardly describable. It is so vile, so hurtful that it can't be put into words. It is like no fear that I have ever experienced in my life. I fear for my own life far less.
After 3 and a half years of professional survival all of these emotions can reawaken within you in fractions of a second. In that one moment I had relived all of our past and even planned for our future. I am amazed at how quickly it can come back. It was an awakening in many, many ways.
It turns out that Sydney simply woke up and did not see Graham in the covers beside her and became scared. I don't know whether she thought it was the "boogeyman" or not but I certainly did. I thought it was the end of my world. Lynley pointed out to Sydney that Graham was still there. She quickly regained her composure and she fell back asleep. That was two hours ago but I am still not as lucky. I am still reeling from my fears. My heart has still not recovered.
It was, however, a shot I needed. We will always remember but it is one thing to simply recall an event and quite another to relive it. In a strange way I feel reinvigorated and reinspired.
My purpose seems clearer than ever.
6:14 AM 1/5/2006
Yesterday was an exercise in reality. After waking up scared out of my wits, the event never really left my mind. I just kind of spent my morning shocked at how quickly all of the fear could come rushing back. I was hoping I had left those feelings behind. I still worry everyday about Sydney relapsing but it isn't the same thing. It isn't the mind-numbing, air-sucking, void of a wasteland that true terror exists in. I don't particularly like either feeling but one is a survivable existence while the other is hardly qualified as living. The experience was good because it reminded me of so much about the life we once lived day in and day out. To this day I still can't explain what that reality is like to a person that has not had their child's life really hang in the balance, to know that their child has a better chance of dieing than of surviving, to know that there might not be a tomorrow or a next week or next month. There are no words that encapsulate that feeling. At times I wish I could give people a glimpse into that world. I wish I could conjure those emotions in others so that they would know what these families and children endure in their daily lives. If that were the case I think there would be so much more support and so much more commitment to find cures for not only this but so many more diseases.
The experience left me somewhat inspired. The memory and flashback of emotion found me driving to the hospital yesterday morning. I did not really have a purpose. I disguised it with the fact that I was dropping by some Lunch for Life Giving Tree presents for some of our local families but that honestly wasn't my intent. I just remembered and I wanted to help. I ran into two of the families that I was looking for. The first was Paul Saxon who was visiting for scans before another trip to Vermont for another round of chemotherapy and Nifurtimox. It was great to see him and his mother. I was happy to see him relatively free from pain. He has had a rough few months. It was great to see his face light up as I delivered his Giving Tree present and it was good to talk to his mom. The other person I ran into was Karen. Her daughter relapsed about a week ago and they have had an incredibly difficult time. Elesha was diagnosed about six months after Sydney's transplant in 2004. I have followed their families journey and have spent quite a bit of time talking to their mother. There is a unique bond between those that have been diagnosed at Cook's in Fort Worth and we all follow each other fairly closely. It is as if we all came through the same battle in a war and I am sure that connection will always be there.
The first few weeks after relapse are harder for a parent and family to endure. It is far worse than diagnosis because you know so much more and the reality of your child's mortality really begins to sink in. It takes a while to come to terms with that reality but it is only further complicated by that fact, that in this case, Elesha is a very sick little girl. Her relapse can not be described as anything less than an explosion of disease. Her family has found themselves back in a position as scary as diagnosis with significant pain and tumor compromising blood flow and organs. Meanwhile her family struggles to comfort a very young, very sick little girl. If a prayer was ever going to make a difference this is the little girl that you would want to spend it on. I spent about hour with this family. I answered questions about relapse and available therapies but mostly just tried to let her mother know that she was doing the right thing and that they were in the right place. I think that is one of the biggest mental struggles for parents. At least it was for me. When there are no answers how do you know what the right choice is? What is the right thing? Am I doing okay? Have I done everything I can? Can I do more? In the end, Elesha has been given a few days to a few weeks to survive but we are hoping for so much more. They were given the news not long after I left the hospital.
That is why my purpose is so important. This reality can't be right.
5:28 AM 1/8/2007
For the first time in quite a while my plate feels complete with meaningful work. Last week brought forth a sequence of events which has completely reinvigorated me. Although I have been focused on neuroblastoma full time for quite a while now finding my place and my purpose has been a bit of a challenge. Previously much of time was absorbed in Lunch for Life and now as my time begins to free up I find myself going in 1000 directions. For me the difficulty has been trying to identify where I can be most effective - where I can be of the most help. I continue to talk to many families daily and I have also found myself talking to many throughout the research community and I think I am beginning to find my place. I think I have defined my job as: to create a sense of urgency for families and children that do not have the time to use their voices. I think this rule applies across the board.
I see myself sitting on a fence. On one side I have an army of desperate families. Some are desperate because they need answers right this very second. Some are desperate because their children have lost their battles and they don't want to see another family ripped to shreds as theirs was. Some are desperate because their child has fought a valiant battle only to be waiting for what the future may or may not hold. They, like I, are the lucky ones so far but feel the pressure of sitting on what seems a ticking time bomb.
On the other side of the fence is a very dedicated research and medical community. I have honestly never seen a more dedicated group. They work long hours and they give up time with their children and families to focus on ours. For them, our lives are their life's work. The work tirelessly. They are committed to our children.
So, given this, where is the problem. We have a community of families desperate for answers and researchers and doctors dedicated to finding answers. It should be a no-brainer. So, why don't we have an answer yet? Solving this problem is where I think I see myself fitting in. There are at least two problems with finding the cure to neuroblastoma. First, there is a monetary problem. We have extremely limited funds with which to do a tremendous amount of research. Second, we have a relatively small population with which to test a large volume of promising agents. The fact of the matter is that there aren't many kids who survive long enough or who are desperate enough to try many of the available agents. Third, is a problem which is created by the first two issues. This is the epic time that it seems to take to get new promising agents into our kids. Everyone believes that research takes a very long time. It is by its very nature, isn't it? Well, no! Furthermore, no, no and no!
I have sat for almost 4 years and watched research move at a snails pace. I have come to the opinion that the issue is not the families and not the researchers but rather a combination of all of the external forces and our interpretation of them that seems to be the issue. The fact remains that money is probably always going to be a hurdle and, hopefully, so will be the limited number of patients. These barriers will always be there. Continue to act like they aren't and designing trials like they aren't won't get us around third and back to home. The community has got to accept their limitations and work within them. They need to use resources in the right areas and focus the dollars on where they can be best utilized. Additionally we need to chase the drugs that we have the budget and time to study and prioritize them as such. Wow, that was a bold statement. In short, it is my belief that by placing the focus in the right area, namely finding drugs that work as fast as possible will benefit everyone involved.
I will have to get back to this tomorrow. Like our kids I am simply running out of time. For those of you confused as to where I am going, don't be. I have been given a truly unique opportunity. At the beginning of March I will be speaking to the NANT on behalf of the neuroblastoma community of families. I am searching for the words and the theories that hold the most weight. This will be the opportunity to bridge the gap. We need to put the focus where it belongs. We need more hope and options.
We need to share the same purpose.
5:00 AM 1/9/2007
At home I have a bunch of coughing twerps. A week or so ago brought us another round of ear infections. So far Graham, was the only one who had dodged the bullet. However, gauging from what I woke up to this morning his barking cough has got to be leading to something. The good news is that this little hiccup has not slowed them down one little bit. That has been for better and worse. Wow, on one hand, I have been so thankful for the time I have to spend with them. They have been constant fixtures and, although we have been back to work, the little turkeys have been running rampant around the house.
Sydney has been running the show. She is going through a bossy period lately and given the fact that she has spent so much time with her brother and sister she has trained them to follow her direction. I am continuously amazed at the things she has them do. Graham seems to be her main servant. She has convinced him to do all kinds of things on a regular basis. For instance, any time she changes clothes, in the morning, evenings or even throughout the day, she has trained the boy to go and pick up her clothes and put them in the dirty hamper. Graham is constantly cleaning up after her and seems to be doing it contently. He is her head laundry specialist, dish washer and toy picker upper.
Ainsley, on the other hand, has become her fetcher but is far less reliable. Sydney is constantly beckoning Ainsley to get something for her. The funny thing is that I think Ainsley is in on the joke. She spends most of her time down right frustrating Sydney. Let me explain. I have not done this scientifically but I can pretty much guarantee that this would happen. If I put 100 red cups on a table and one blue cup with juice in it and asked Sydney to get Ainsley to give her the blue cup, Ainsley would bring her every single red cup before she brought Sydney the single blue cup. Worse yet, Ainsley would absolutely delight in the fact that this was completely frustrating Sydney. I can see it now. Every time she went back to the table to get Sydney the blue cup she would act like she was going to get the blue cup. She would touch it. She would trace her finger along its rim. She would give every indication that she would pick it up. Sydney would be in the background egging her on "That's it, the blue one. You've got it. Pick up the blue cup and bring it to me." Ainsley would continue to taunt her until Sydney's blood was almost boiling with pressure and then, at the very last moment and with a crooked little smile, Ainsley would grab the red cup and bring it to Sydney. This, of course, would send Sydney over the edge of complete frustration. I know this is an example but this type of exercise happens more often not. Sydney can't figure out why Ainsley is so stupid but I can tell from that little innocent smirk on Ainsley's face that she is wondering the same thing about her sister.
Kids are sick twisted bundles of joy.
Thankfully I have my purpose to protect me from their wrath.
5:03 AM 1/10/2007
Graham has continued to deteriorate and today we will be taking him to see Dr. Debbie. He continues to bark coughs and the little man just seems out of it. Although he has moments of bursts of energy he seems far more content to just sit back and watch the world go on around him. We also have the addition of diarrhea. He spent much of his morning and evening on the porcelain throne. In between the sittings we have been trying to ply him with Pedialyte but I think we are still losing the battle. Hopefully a quick check up with Dr. Debbie and a stern lecture to keep him hydrated will be all that is needed. Sydney in the other hand is back into the grind. Yesterday was her first day back to school. It was good to get her back to structure and get her brother and sister out of her salt mines. Ainsley was just glad to get everyone out of her hair and have things back to normal. The individualized daytime focus was back on her. She was, once again, an only child. The nightmare was over.
I have been working on several things. I am chasing several potential new ideas in the land of neuroblastoma research. There is so much out there to get my mind wrapped around and I am still fighting my through the research. On my short list of things that I am reading through are Montelukast Sodium, COX inhibitors, oncolytic viruses (Sinbis and Newcastle), Mimetic vaccines, and, believe it or not, thermotherapy. For me, much of this is still in the land of the theoretical but I am hoping to advance the science on Singulair even further. I have been in touch with the Swedish researches that discovered its effectiveness against neuroblastoma and I am trying to identify the necessary steps to get it to human trial. I have set a goal of getting it into a Phase I trial by the end of the year.
Today I have a meeting with the UVM NB parent's group. This group has been organized to speed up the cure and was instrumental in getting Nifurtimox into trial. I am looking forward to meeting with them and getting my finger on the pulse of their work. They seem to be looking in many new promising new areas.
It is days like this where this purpose stuff seems really cool. I feel like I am making a difference.
5:33 AM 1/11/2007
Good Morning! Yesterday I took my sickly little Dudely into see Dr. Debbie. He had a tough morning but just as soon as we dawned the doors of her office the little twerp made a miraculous recovery. He was the cutest and happiest bundle of joy that you have ever seen. He made googly eyes at the receptionist and played peek-a-boo with the lady that takes the co pay. He spent the next 10 minutes in the waiting room with a permanent smile implanted on his face, happily playing with all of the toys and games found scattered around the room. When we were called he joyfully went skipping to the exam room and even squealed in happiness when she accidentally tickled his tummy. He was pleasant, cute, and polite. He was the dream of any parent. However, he refused to cough, sneeze, ooze snot, whine, feign impending death or do any of the stuff that brought us there in the first place. Dr. Debbie even gave me that look. You know, that look. It is that look that they give first time parents when they show up at the ER at 2:00 in the morning because their child sneezed for the first time. It was that look of "Oh, you poor little soul. It is so cute that you brought him in because you thought he was sick." Yes, it was that look.
After a completely unnecessary check up Dr. Debbie handed me a hand written prescription for lots of loves and kisses and some basic information for the unlikely contingency of his diarrhea flaring up again. It was so embarrassing. Regardless, I grabbed my bright-eyed and bushy tailed little bundle of health and we made our way out the door. I think one of the nurses understood my frustration. After all, the look of embarrassment was tattooed in red all over my face. As I opened the door to the suburban he let out a cough and a wheeze that would have made you think that a pandemic of bird flu was minor in comparison. Thankfully, the nurse that understood me had stepped outside to help another family and heard the enormous cough.
She laughed. I smiled.
Purpose is funny too. You don't always get what you see.
5:20 AM 1/12/2007
This week has absolutely flown by. I can not believe it is already Friday. I have to be honest, when I started working with the CNCF full time I knew there would be plenty to do. What I did not realize was how consuming it would be. I am working far more hours but the stress has just melted away. It is completely enthralling and rejuvenating. I have finally had the time to push the envelope on what I knew. I have an entirely new level of understanding of cancer and neuroblastoma. The good news is that at some point all of the materials have become easier to read. I have always found myself snooping through pubmed for articles on neuroblastoma. A good portion of them I understood but there were many in which I could only understand every other word. In time though, and with further study, I am getting faster. I am not only understanding but I am able to make connections between one piece of research and another. This may not seem like much but I have found connections among agents that the people doing the studies have sometimes not even considered. Each time I make a discovery there is a moment of surprise and then satisfaction. In this sense, it is very rewarding.
I guess I should probably tell you what I am doing. Well outside of the fact that I have many interests - oncolytic viruses, vaccines, targeting chemo resistant tumors, and finding low toxicity therapies for MRD - there is a large body of research, but, not many people with the time or inclination to sift through the research and make all of the connections. That is a bit of what I am doing. A group of other parents, researchers, oncologists, and I are sifting through the research looking for drugs that are readily available, show activity against neuroblastoma, and work well with some of the other therapies that we have already identified.
My interested began with Singulair, or montelukast sodium. I was bothered by the fact that here we had a drug that was almost completely benign, that had activity against neuroblastoma, and had a wealth of dosing data and yet was not being tried in children with neuroblastoma. I was especially bothered by this in the wake of the fact that there are so few options in relapse and almost none for kids in first and second remission when the risk of relapse is so incredibly high. I made it my personal goal to get montelukast sodium in human trial in less than a year. Now I don't think that Singulair is a cure for cancer but it does do some very important things. It greatly inhibits neuroblastoma. In this sense it keeps it from growing in mice. It does this by itself with no other drugs. The problem is that in proving how well it worked they did it in a dose that was pretty high when compared to humans. From what I can tell they gave the mice 10 to 30 mg/day which is even larger than the adult dose of 10mg per day and well above that used in pediatrics of 4 or 5 mg per day. It sound like bad news, right? Well, no, not really. I have done some pretty exhaustive research of dosing montelukast sodium and I have found several studies were they safely administered up to 200mg 3 times per day and there are several over dosage reports where kids have ingested more that 150mg without toxicity. In short, the dosages that they are using for asthma control are probably well below what can be safely tolerated. So this is one of the things that I want to discover - how much can we safely give. However, this is only one aspect of my research with montelukast sodium and I think I have found a way to also make it just as effective at much lower doses. I have found some other drugs which also have activity against neuroblastoma on their own merit but look like they will be incredibly synergistic with montelukast sodium because of certain other properties that they seem to have. Better yet, these drugs are readily available and thoroughly tested in pediatrics. So, in an effort to make montelukast work better, I am discovering a potential cocktail of drugs that could be even more powerful. It is incredibly exciting and rewarding and just one area of science that I am sticking my nose into.
My purpose has been one of my greatest rewards.
5:28 AM 1/16/2007
We survived being iced in for three days - together - all of us - even the kids. I really can't tell you how much I love my kids. I like to think it is a little more simply because I had the "benefit" of going through cancer treatment with Sydney. I had the opportunity to see and feel things in my relationship with her that just can't be experience unless you or your child has been faced with life or death. I absolutely know that I am more appreciative of my daughter and our relationship than I could have been without the experience and there is not a day that I don't think about them in that context. With her I shared this common experience and this punch to the gut of how fragile life is. So, maybe it is not that I love my kids more but that I appreciate them more because I know to. Regardless, the point I am trying to make is that I really love my kids. I do that o that know one will be tempted to call CPS.
I say that because I am also about to tell you that I am so glad that this "ice in/holiday" is over so that I can gain back some semblance of sanity. My little twerps (or should I say Lynley's?) have completely taken over. They took advantage of the fact that we could not escape and have been trying to suck us into their little chaotic world. Wow, were they a handful this weekend. It is funny. I think this mutinous behavior comes in waves and this weekend they were trying to take over the mother ship. In the beginning they had a chance. They were smart. They worked together. They new they had us outnumbered and they took every advantage to keep it that way. Ultimately, however, they simply ran out of time (and ice) and now they have to go back to reality.
For some reason, outside of torturing their nice sweet parents, they love to torture their new kitty, Boo. The only difference is that I don't really think they know that they are torturing the cat. Regardless, each of them loves to pick up the cat and take it to some far off corner to try and love and snuggle the life out of the poor little cat. It isn't that they are trying to be mean to the cat. They love it. They love it so much I sometimes think that the only way they could get any closer would be to climb inside it - literally. Usually, the only way we know what they are up to are the growls heard from in the closet or the cat scratches on their little hands and faces. You see, we watch them pretty closely around Boo. We try and teach them to pet the cat and to treat the cat like it is an actual living and breathing animal (because it is) But, apparently it isn't really all that fun to love a cat by petting it. To love it properly you really need to pull its hair, its legs, and try to smother it. I understand all of their tactics, after all, those were the same skills I used to get their mother. The big difference was that Lynley could protect herself. The poor little cat is at their mercy and that is something a 5, 2, and 1 year old have little of.
Regardless, our children are always trying to keep us occupied while one of the others is trying to find the cat and torture it in some hidden lair of kitty abuse. We have found Boo and the kids under tables and beds, in closets and bathrooms, and sometimes, even in kitchen cabinets. It is like clock work and if we are not physically holding the cat you can be sure that they will be loving it to death somewhere. When they get caught they just pass the cat abuse baton to one of their siblings and the search continues. The are sneaky little deviant twerps and, quite frankly, I am amazed that we have kept them contained for this long.
The good news is that today I get to reenter society. Martha is back to care for Ainsley and the kids are going back to school. I get to be a grown up again. That is after I finish playing with the cat in the closet.
Sometimes, no matter how much you appreciate your purpii it just doesn't seem to appreciate you back.
5:51 AM 1/17/2006
Yesterday was a cold day in Fort Worth, TX. Quite frankly, I like it that way. However, what it also means is that you need to bundle up your kids to keep them nice and warm. If you don't provide this direction and service to your children you can get yourself in some trouble. For this reason, and because of the fact that I love my children, I try and make an earnest effort at trying to keep them from freezing.
It never really warmed up yesterday. When I picked up Sydney it was just downright cold. It was cute watching the little Nanooks of the north waddle outside to greet their parents. It was like watching a chain of miniature Michelin man oompaloompas make their way out to the pickup areas. All of them were dressed in layers of clothes and big puffy jackets. Regardless, they all slowly made it out to the cars. As much as I had complained about how badly I needed a break from the kiddos, I was excited to see them yesterday afternoon. Don't tell them but I was going through chaos withdrawal.
Next on my pickup list was Graham. It was so cold Sydney and I ran from the car to the building at his school. We found Graham in a pretty good mood and he was even the first one up from their afternoon naps. He had been to the potty and he was ready to go. I gathered his backpack and extra clothes and began the process of bundling him up. Once again, and as I pointed out earlier, this was not only a nice service for my kiddos but this was also my duty as a Daddy. As soon as I got his jacket out he balked, "No jacket, Dad! (Yes he called me Dad - I knew this was serious!) I carefully explained to him that it was cold outside. He did not care. He was taking a stand and he wasn't going to put on his jacket. I explained that he must were a jacket because of the weather. This was met with a "No, don't like it" and the little man actually stuck his tongue out at me, made a zerbert sound, folded his arms across his chest, and turned his back to me.
At this moment I was no longer missing my children as much as I had an hour earlier. I decided to forcefully put on his jacket. This time I did not ask. I gently grabbed his arm and put in his jacket. He limp wristed me. He noodle armed me. He shoulder dropped. He pulled back. He tried every tactic to keep me from putting on his jacket but very calmly I got the jacket on the boy. In his time away from me he had obviously forgotten that I was SuperDad. In the end I, of course, had won although now I now had a screaming, writhing, jacketed son on the floor. I thanked the teacher, said my goodbyes, threw my child over my shoulder and made my way back out to the car. Graham was screaming and kicking in full force. On the way out I passed by the principal's office to complain that they had broken my son. We could not help it but laugh at the display we were witnessing. This was a first for Graham and one for the record books.
In the end, the boy finally regained his sanity. I , on the other hand, was not as excited about being back in the kingdom of chaos. In a way I was thankful for my day back to work and the return to normalcy. Ironically it is snowing out the window. All of the schools have been closed.
Wow, do I have purpii!
5:20 AM 1/18/2007
We survived another day in the den of destruction. I would like to tell you it was really bad but, to be honest, since Lynley did not have to go to work due to the weather she was lucky enough to be in charge. I, on the other hand, had two relatively important meetings to attend. The first was actually the night before. I made a presentation to the an Ad Copy and Production class at TCU. It turns out the we, the CNCF and Lunch for Life, are their semester project. The class is being divided into teams with the goal of developing several fairly comprehensive marketing campaigns targeting young people between the ages of 14 and 25. My hope is that these groups will give us insight and perhaps direction on how to utilize many of the tools on the internet to attract this population. It was a great experience for me to speak to these young future professionals. I delivered my presentation in about 25 minutes but spent the next hour answering questions and talking to them about neuroblastoma and our kids. I think it was powerful for everyone involved. I have high hopes for their work. I have already received a few emails from individuals in the class hoping to do more.
My second meeting was with a group of parents and doctors working together to fund research that will help kids with neuroblastoma and medulloblastoma. Each week we review staffing, funding, and research activities to identify the critical actions for the upcoming week. We have high expectations and goals. It is our intent to cure relapsed neuroblastoma and relapsed medulloblastoma by providing scientific-based recommendations for therapy, maximizing Nifurtimox in combination with other agents, and testing new readily available agents and opening them in new trials. The group is essentially leveraging prior studies to quickly open multi-agent trials by adding single agents and by getting human data via emergency IND. This group has already developed one trial in less than two months and has enough extremely promising data to begin several new trials. The model that is being utilized will also hopefully accomplish the very important goal of making promising trials available to kids in relapse that leverage the success of prior efficacious trials while adding the hope of promising new agents that have been shown to work successfully in mice and rat models. This is one of the reasons I have been doing so much research as of late. I have been interested in learning more about many promising and hopeful agents whose research has just been sitting and waiting in medical journals around the world. For the first time I truly feel like I am making a difference. It is invigorating.
I am feeling purpose.
5:52 AM 1/19/2007
I just get a dose of all of this invigorating purpose and it is already creeping up on the weekend. The kids are all doing well. For the moment everyone seems somewhat healthy but with the multitudes of exposures that our kids have I know the next sniffle is just around the corner. I think that during all of the togetherness that we experienced last weekend and during the snow days this week the kids have grown tired of Lynley and I. Well, Graham and Sydney have. Ainsley is as happy as she can be to have the focus back on her where she believes it rightly belongs. However, Graham and Sydney have moved into the closet under the stairs. Now , if you want a good picture of their new home I seem to remember that Harry Potter's cupboard under the stairs was fairly similar. The only difference between that and the Twerp hideout seems to be the excess of pillows and toys that the squirts have scavenged (stolen) from around the house. Parents are not allowed in. In fact, on the way home yesterday I was given a stern lecture that Graham and Sydney were going to play in their new house. Ainsley and I weren't invited. That was too bad because of the four of us I am the one with the mastery of architectural and engineering skills. After all, I have 35 years experience of making forts with nothing but pillows from the couch. I know it isn't extreme engineering but you must be at least somewhat impressed. No! Well, neither were they. Ordinarily I would be a little jealous that they did not need their Daddy to play with but after this week I may just take this needed break.
My purpii are already becoming too cool for their Daddy.
5:27 AM 1/22/2007
Boys and girls are very different creatures. I am so lucky that I had a gaggle of different sexes. I am constantly amazed at how different they are. Without any instruction the girls have always been drawn to the pink dress up clothes and, thankfully, Graham has been far more tuned into Superman, choo choo trains, and cars. The girls are far more demure and don't like talking about there bodily functions but Graham, on the other hand, takes curious enjoyment in himself and is not afraid to tell you about it. There are some areas where he draws the line, however.
The boy, a stellar example of a potty trained little boy, still refuses to wipe his own hinny. I think it all began almost a year ago when we first experimented with potty training. The first time we taught the boy to wipe his hind end he got some "stuff" on his finger. Since that very day every time the boy has gone number 2 he has refused to wipe his own tush. In fact, if questioned, he will produce a frown and announce "No, don't wanna, I will get poo poo on my finger!" He then does a 180, throws his hands to the floor, and presents himself for wiping. He can stay that way for hours. Over time we have convinced him to at least try and wipe but we are always guaranteed " But I am going to get poo poo on my finger!"
On Saturday afternoon I caught the boy performing one his other favorite boyish activities. He was sitting in his mother's lap just picking away. By the time I caught him he was two knuckles into his nose. I told him not to pick his nose. He asked why and without thinking I said "because you have poo poo on your finger." He gave me one of his trademark "No nots" followed by a "I don't have poo poo on my finger." I told him he did and if he did not stop picking his nose with that finger he would get the poo poo smell stuck in his nose and he would never get it out. I told him he would smell poo poo forever and ever.
Now, agreed. This is probably not one of the recommended tactics to teach your son not to pick his nose but we were at the end of our ropes. We have tried just about all that can be tried and in desperation this is what I came up with. In the end, I now have a son that refuses to wipe his hinny because he won' be able to pick his nose anymore and is afraid he will smell poo poo for the rest of his life. Furthermore he now has the annoying habit of sniffing his buggerlets as he pulls them out of his nose.
So, in review, I can't really recommend any of these superior training techniques to any of you. However, I simply do not see how this can be related to poor parenting (Lynley's opinion may differ). It must be related to the fact that he is a boy and boys will just be boys.
Just so you know, I have purpose on my finger.
5:20 AM 1/23/2007
Good morning! Well no, I take that back. This morning has really not been that good. I follow 3 or 4 stories of children everyday and not one of them was very good this morning. Every one of the children was in the midst of some progression or trauma. I wish I could say that all of these were kind of standard and predictable. But, as is with the rest of this disease, there are no easy answers and no seemingly predictable patterns. For neuroblastoma being one single disease there sure are a lot of different responses. I can honestly look at these four children and say that there disease is nothing alike. Although they have had the same drugs and faced many of the same challenges, there responses have been completely different. Each have had there own response characteristics and there does not seem to be a single drug that has worked for all of them. I wish I could figure out why some kids respond to some agents and why others do not. I have always had a pretty clear picture in my head when it came to neuroblastoma treatment. In fact, as I have mentioned before, I have my very own relapse treatment decision tree just in case. I feel confident in it but it is dependant upon one single thing, Sydney must respond to the drugs. That seems to be the challenge in this post induction and transplant setting. How do you find the drugs that will work for your child? For about a $1000.00 there are labs out there that will test chemical agents against tumor cell lines. They will tell you exactly what chemotherapies will and will not work against you child's tumor. Now, the only problems is that I don't know how accurate the studies are. They come from reputable labs but if this is as simple as it sounds why aren't all kids tested? How long does it take? How accurate are the results? I know full well that this would not be covered by insurance but it is something that I keep coming back to, especially in the relapse setting. Why are we guessing when this disease is so incredibly heterogeneous and aggressive? We don't have the time to make mistakes. I need to go back and do my research. I need to remember who told me about this (Neil?) and then I need to find out the facts. More on this later....
I still have purpose on my finger.
5:30 AM 1/24/2007
Sydney has a boyfriend. Now, in kindergarten, everyone thinks it is real cute. I, on the other hand, don't paint such a rosy picture. Thankfully though, I somewhat approve of the young man. Benjamin is his name but all of the rest of the kids call him Benji. This is also one of the same young men that I sat next to one day at lunch earlier last semester. If I remember correctly he pounded me with a barrage of questions. I just did not realize that, at that time, he was sizing me up. Regardless, he is a handsome, polite, confident, and intelligent little boy with a funny streak. In fact, if I had to pick a boy for her to be "interested" in he would be at the top of my list. I just get the sense that this boy will be someone someday. Still, if I had any fear of this becoming anything more serious, I would squash him like a bug. However, for the time being I have to admit that it is somewhat cute and they seem happy together.
For the last week or so they have become closer and closer together. On Monday it was hugs as they left school and today there was apparently some pretty serious hand holding going on if you listen to the teachers. I don't think it will progress much from here if my manly dudely senses are firing properly. Sydney is already lecturing him about spending too much time with his friends on the playground and not enough time with her. It is hard to explain the concept to a five year old but I tried to explain to her that you can only do that to a man after he has been sufficiently beaten down by years of nagging. After all, that is the sign that he is ready to be married. That was how Mommy and Daddy fell in love. When a man finally succumbs to the daily beatings then, and only then, do you know he is properly trained. Until then you can't boss him around too much. You have to remember, we are like dogs and without adequate training we will always try and escape. Give us too little leash and we will fight back. Give us too much and we won't listen enough to your liking. It requires diligence and obedience to grow a proper husband. You have to provide us with the proper amount of play, rest, food, and water and eventually we will probably just lay at your feet waiting for you to tell us to do what is next. Okay, okay, so I did not go into this much detail but I figured she would benefit from the dissertation later in life when reviewing her diary. Regardless, I told her it would probably be best to give him his freedom on the playground. He needs that false sense of freedom every once in while. I do.
Hopefully, purpose he will find a purpose to be his collar too.
5:36 AM 1/25/2007
All of a sudden things are pretty fast and furious again. Yesterday was quite a day on many levels. First off, I had my weekly neuroblastoma research meeting. This one was really interesting. It is too much to go into right now but it was a presentation from Drs. Ross and Spengler (Fordham) who made some interesting discoveries regarding neuroblastoma stem cells. This subject alone is worth a couple of days of diary entries but unfortunately I really don't have enough time to really delve into it now. I learned a tremendous amount about neuroblastoma stem cells and it is one of the better presentations that we have participated in. There were several great minds in on the call and I think the presentation was worthwhile not only for the parents involved but for the researchers and clinicians who also found some potential areas to work together. I can't say that we discovered the cure to cancer but we did get a bit closer. Additionally, it looks like we will be getting some stem cell lines to test some of our theories out on.
My next conversation was with Dr. Myers at Texas Children's. He is the new primary investigator on the Nestle Vaccine Study that we had signed Sydney up for over 2 years ago. About a week ago I had heard a rumor that there was some excitement about 1 of the children in the latest cohort. To get the scoop I decided to call Dr. Heidi Russell. As I would come to find out the rumors were correct. The latest child in the study had some significant disease response. There was another objective response earlier on but this one was truly significant. The child, with relapsed and obvious bone disease in her shoulder, had a significant unexplained response a few days after the injection of the vaccine. Her shoulder swelled up over the spot of the disease. The did an MRI of the shoulder and found that there appeared to be activity around the center of the tumor in her bone. This would be consistent with T-cell mediated killing activity, the goal of this vaccine. From what I understand the vaccine eradicated the disease from the area on her shoulder and they have petitioned the FDA to give the child another injection in a few weeks. I will write more about the vaccine at a later time but this was really good information as far as I can tell. In short, Sydney's vaccine is ready and Lynley and I are discussing the protocol and the consent. In all fairness, Lynley does not appear to like this vaccine trial so this ought to be a really interesting debate. Regardless of our differing opinions I know we will come to the right answer together.
In fact we are talking now. Gotta Go.
5:02 AM 1/26/2007
This is going to be a very short entry this morning. Lynley is out of town on a trip with her friends and she left me all alone to fend for myself against the twerp army. The kids and I are having a good time and things are going smoothly. Unfortunately, I don't have much time to share. There are lunches to pack and pictures to cut out for one of Sydney's assignments at school. There will be much more to talk about Monday. It has been an incredible week.
Purpose is still in overdrive.
4:17 AM 1/29/2007
My honey is back home. She arrived yesterday to find me beaten and battered but still alive. The kids had tied me up and stuck me in the closet and were eating ice cream and candy three meals a day. Don't believe me? Well, that is the story I am sticking to. In all due honesty we had a tremendous time. The kids were great and they were really pretty well behaved. They are, however, quite a bit of work. Near the end I could see a gleam in their eyes and I knew they were contemplating mutiny. They were testing the strength of Daddy's mental shackles and I really believe that if Lynley had not come home when she did they would have initiated a coup.
I never really feared keeping all three kids to myself. I knew it would be busy and I knew there would be lots of work but the thought of it never really bothered me. I guess it is the optimist in me. After all I know of families in much more dire straights with 1 in the hospital and 3 or 4 more at home. It would take a lot of abuse for me to even contemplate feeling sorry for myself. But, I can tell you that there was a huge smile on my face when my honey stepped off of that plane. It was so good to have our family back together again. It is times like this that I realize what a good team we make.
This week will be another busy week. Sydney has an oncology appointment mid week. By that time we will probably need to be prepared to make a decision on whether or not we will go through with the vaccine trial in Houston. As I mentioned previously the protocol has changed a bit since we originally signed up for the trial and Lynley and I need to come to terms with it. We have both been researching various aspects of it and simply have not had the opportunity to get back together to discuss it.
Another thing we will be doing this week is filming for the CNCF. On Wednesday, Thursday, and Friday we will be filming up at Cook's and elsewhere for a new short video on neuroblastoma and the foundation. It will be similar to a commercial but the purpose of the film is to explain why we are here. It should be fun and it is important to get the word out there about neuroblastoma and the CNCF.
Well, I best be off, there is a mountain of work to do this week and, as usual, just a short time to do it.
My purpose and I will plug on.
4:56 AM 1/30/2007
Good Morning! Well, yesterday was a whirlwind and there is more to come this week. One of the critical things that I need to do is to get a good solid understanding of this vaccine trial in Houston. So I don't have to dig back into my diary for all of the information that I wrote originally here is my basic understanding of the trial.
The body has different ways of fighting infection and disease. No one way seems perfect for fighting cancers. This research study combines two different ways of fighting disease, antibodies and T cells, hoping that they will work together. Antibodies are types of proteins that protect the body from bacterial and other diseases. T cells, also called cytotoxic T lymphocytes or CTLs, are special infection-fighting blood cells that can kill other cells including tumor cells. Both antibodies and T cells have been used to treat patients with cancers; they have shown promise, but have not been strong enough to cure most patients.
The antibody used in this study is called 14g2a. It first came from mice that have developed immunity to human neuroblastoma. This antibody sticks to neuroblastoma cells because of a substance on the outside of these cells called GD2. In this sense it is very similar to the other antibodies that Sydney has already received, 3F8 and ch14.18. 14g2a and other antibodies that bind to GD2 have been used to treat people with neuroblastoma. For this study 14g2a has been changed so that instead of floating free in the blood it is now joined to the T cells.
T lymphocytes or CTLs can kill tumor cells but there normally are not enough of them to kill all the tumor cells. Some researchers have taken T cells from a person's blood, grown more of them in the laboratory and then given them back to the person. Sometimes an antibody, a chimeric receptor, is attached to these T cells to help them bind to the tumor cells. These chimeric receptor-T cells seem to kill some of the tumor, but they don't last very long and so the tumor comes back. They have found that T cells that are also trained to recognize the virus that causes infectious mononucleosis, Epstein Barr Virus (EBV), can stay in the blood stream for many years. By joining the 14g2a antibody to the CTLs that recognize EBV they believe they will make a cell that can last a long time in the body (because they are EBV specific) and recognize and kill neuroblastoma cells (because an antibody that can recognize these cells has been joined to their surface).
This was the original trial. The real risk here in my mind was due to secondary cancers and even that was extremely slight. I point it out because it is one of the risk hurdles that Lynley and I have to overcome. The risk comes from the retrovirus which joins the T Cell to the 14g2a antibody. To get the 14g2a antibody to attach to the surface of the T cell, they have to insert the antibody gene into the T cell. This is done with a virus called a retrovirus that has been made for this study and will carry the antibody gene into the T cell. This virus also helps them find the EBV specific CTLs and T cells in Sydney's blood after they inject them; in order to tell them apart they made two viruses that are very slightly different. These two viruses both act the same way and can only be told apart by a special laboratory test.
The retrovirus has been altered so it should not be able to come out of the T cells and infect other cells. When retroviral vectors enter a normal cell in the body, the gene it carries goes into the DNA (genetic material) of the cell. Human DNA contains thousands of genes. When the retrovirus adds the gene it carries into the human DNA this is called integration. Integration can occur anywhere in DNA and most integration does not harm the cell or the study subjects. However, there is a chance that there may be some parts of human DNA where integration may turn on other genes. For example, if it turned on a gene that made a substance that caused the cell to grow it might cause uncontrolled increase in the numbers of cells, which could result in cancer. There was one study in mice where cancer occurred, but most other animal studies have shown this risk to be very low with the type of retrovirus we are using is different. There have also been studies in humans where secondary leukemias have occurred but the risk of the problem occurring in this study is supposed to be low because the retrovirus is different and many genes need to be changed for a cell to turn cancerous. Additionally, they have used this retrovirus in hundreds of patients and they have not seen any secondary cancers as of yet.
Well, there you have it -a vaccine primer on part A of this particular vaccine. Tomorrow I will discuss the changes they have made to this trial which have increased the risks but also apparently increased the rewards.
Isn't purpose fascinating.
4:52 AM 1/31/2006
Good morning! This morning my brain is having a little difficulty getting a sufficient jump start. So, I guess I will have to type more slowly. The rugrats are all doing well. They have all reintegrated back into life. Mommy is back in the swing of things and I am glad to have my partner back to help. She has gotten us all whipped back into shape - no more ice cream with fruit flavored candy for breakfast for a while.
Now, onto the vaccine study. One of the problems with the original study was that they were not able to regularly detect the infused cells in the patients. There was one patient whose infused cells they were able to detect but the amount was small and they could only detect them for about 3 weeks. This pointed to two problems: the cells were not dividing and multiplying and they did not appear to live in the body very long. The first problem is an issue of cell expansion. They will never be able to feasibly make enough of these cells for each child to be able to reach high enough levels to show anti tumor activity. The original goal was that they would infuse the cells and then they would begin to expand in the body generating significant enough numbers to stage a formidable attack against the tumor cells. For some reason this simply was not happening.
Taking a hint from other studies and investigators they noted that following stem cell transplantation there is recovery of the T lymphocyte compartment. This proliferative environment favors expansion of infused T lymphocytes. Their studies with gene marked EBV- CTL indicated more than 1000 fold expansion of the infused cells within 7 days. In most patients with cancer, including those with neuroblastoma, the immune system is closer to a steady state, and they and others have consistently failed to observe an equivalent expansion of the infused cells. Recently, Rosenberg’s group described how a proliferative environment could be artificially induced, by administration of Fludaribine and cyclophosphamide. 52 Patients with advanced melanoma received lymphoreductive doses of these cytotoxic drugs and were then infused with autologous tumor infiltrating lymphocytes (TIL). In 6 patients there was marked expansion of the infused cells associated with tumor responses; in two patients the tumor responses were complete, and the infused TIL came to dominate the lymphoid compartment, suggesting a relationship between cell expansion and anti-tumor activity. In this modification to the original treatment plan, they will investigate whether the same benefits can be seen in patients with advanced relapsed neuroblastoma who are receiving T cells or EBV-CTL that have been genetically modified to express chimeric receptors specific for the neuroblastoma-associated antigen GD2.
In short, they believe (and there is research to support) that there is not enough space to allow the injected vaccine to do its business. They believe that by depleting the body of T cells the vaccine will fit more comfortably and be able to expand to a number that is sufficient to induce anti tumor activity. Additionally, and I have not gone into it above, they believe that this will also improve the longevity of the cells within the body. I know, I know, it sounds like hocus pocus but there is actually some pretty reasonable science behind this theory. Regardless, they will be using what they call an anti CD45 antibody to deplete the body of T cells before infusing the vaccine. Hopefully, tomorrow I will be able to go into the risks of the antibody and begin to review the whole plan it its entirety.
Until then, I have purpose to attend to.
5:17 AM 2/1/2007
I think I have painted a pretty clear picture of the vaccine trial for Sydney. Their are several side effects related to all of the individual components of this therapy but, for the most part, they are minor.
The CD45 has several common side effects such as fever and chills, headache, upset stomach, vomiting and diarrhea. A small percentage of patients had an allergic reaction with tightness of the throat and breathing problems, faintness, and skin rashes. Allergic reactions can be severe and life-threatening in rare cases. Liver and lung damage are also possible but this has not happened in the previous animal and human studies using similar treatment. Finally, the depletion of her own blood and immune cells by CD45 antibodies will increase the risk of infections. Hopefully, her blood counts will come back quickly, but there is a risk that recovery could be delayed.
The 14g2a antibody is not expected to have many side effects. As we well know, there are several antibodies that are similar to 14g2a and have been given to patients with cancer - two of them to Sydney. Some children who have received these antibodies have had temporary muscle and back pain, fever and chills, shaking, chest pain and labored breathing, wheezing, and nausea or vomiting. These side effects are unlikely in this study where the antibody is stuck to the T cells. One other side effect is that the antibody may react with normal cells such as brain cells which have low amounts of GD2 on the cell surface as well as the cancer cells which have high amounts of GD2. They think this is unlikely because it has not been seen when the free antibody that has been given and because the T cells do not seem able to respond to the GD2 when only a small amount of it is present on a cell.
These side effects take together with the side effects from the T Cells and the retrovirus paint a pretty good picture of what our risks are. In my mind, I discount many of the side effects from the CD45 antibody. With the exception of anaphylaxis the others have become standard risks of doing therapy. On my scale temporary and fleeting nausea, diarrhea, fever, and chills don't way heavily against the risk of the nemesis NB coming back. I can deal with those. We will give her drugs to manage those side effects and then they will be gone. Hopefully we will be the better for a nice dose of vaccine. For me, in thinking about Sydney in her current state of good health, this temporary inconvenience is no worse than the common cold and it is a risk worth taking. A risk that is a little more significant is the immunosuppressive effect of the antibody. I am more concerned about this simply because she is healthy right now. If she was sick this would hardly be a thought. It isn't fun but it is still so much better than the risks of chemotherapy in this sense. The real risk for me is the secondary cancers. I don't know why it scares me so much but it really does. I could have written for hours and hours regarding all of the studies that I have read about the potential risk from gene transfer. The fact of the matter is that it does happen. While it is true that they believe they have reduced the risks with this particular retrovirus, we still do not know for sure.
How do we get beyond this? It is so hard to put Sydney up against this risk when she is so healthy. I would hate to do it and then develop leukemia 3 years down the road. It is just such a tough decision when she is seemingly so well although rationally I know the risks of not doing something. Some days I am glad that I don't know for sure whether Sydney relapsed and then there are days like today when I wish I knew for sure. It has such huge implications on the risks we take. If she did not relapse then I think I have a tough decision. However, if she did relapse this is a no brainier of a decision. The likelihood of the disease coming back greatly outweighs the secondary cancer risk to Sydney. This phase 1 trial has shown an effect and we can only believe that it will get better from here. In other words, in my mind it works. The vaccine is having an effect. Right now it is lasting weeks and I can only believe that larger and additional doses would lead to a truly durable effect - at least that is what we have seen in other vaccines.
So, what do we do? How much risk do we put Sydney at? What is right? What is in her best interest? I just don't know yet. I know I need to be slapped. I know from being research Dad that I need to treat this as if it as a relapse. It is just so much harder when it is your baby girl on the line.
I have purpose, just not the answers.
5:05 AM 2/2/2006
Yesterday Sydney had a check up at the oncology clinic. It was the usual simple checkup - a physical exam, some prodding, a finger poke and, of course, a mouthful of questions for me. I think I have done a fairly decent job of breaking this vaccine trial down to its main ingredients. I know which risks I am willing to tolerate for Sydney and there are a bunch of those. In fighting for the opportunity to spare her life I am more than willing to trade a week of normalcy for some nausea, diarrhea, fever and chills. At this point I can even discount some of the more severe risks that fall in the extremely unlikely category. These would be the reactions from the antibody like anaphylaxis or from the vaccine like unradiated EBV that could potentially cause the virus. I am even prepared to dismiss many of the theoretical risks that have to do with the vaccine creating some kind of autoimmune disease or damaging some other healthy cells that could cause some severe reactions. In short , I am realistic - I think. I still, however, have not come to terms with the secondary cancer risk because I can not put my finger on what it truly is. I can't tell you whether it is less than .05% or more than 20% and this is my real problem. I have to come to terms with that. I have to define that risk before I can come to a decision for Sydney.
Yesterday I talked to three different oncologists and I received three different answers. I got a "no, don't do it.", a "yes", and a "you know, you ask really tough questions." The tricky part is identifying why they gave the advice the way that they did. I suspect that they were not looking at it from the same perspective that I was. In fact, I am pretty sure that the "No" was not because of the secondary cancer risk but because of the belief that Sydney has bad biology. In this sense, the oncologist was saying we might as well enjoy life because it does not matter what you do, it will eventually get you. I hate that mentality but I understand the oncologists that feel that way. They are predictable and, unfortunately, they are right more often than not. But, my question is: "Are they creating a self fulfilling prophecy?" Regardless, for me, I have to disregard that prospective. It does not weigh on me. It is an interesting perspective but it is not aimed at curing neuroblastoma and it makes for an entirely different discussion. The "yes" came from my all time favorite oncologist, Dr. Eames. I think she had a better grasp on the leukemic risk. In this sense I trust her. She believes it is extremely unlikely based on her experience and exposure. All I have to go off of is some articles in some medical journals which may or may not truly be related and may or may not be an accurate representation of risk. Regardless, she was going to follow up with Heidi Russell and get back with us. Additionally, she suggested that Lynley and I hop down to Houston and meet with them. I think that is a great idea. In the next few weeks Lynley and I will have to coordinate a trip down to Houston and someone to care for the kids while we are on our whirlwind tour.
Ultimately, my gut feeling is that we will do the trial in Houston. Eventually, I think I will come to the conclusion that the risk of doing nothing is outweighed by the risk of completing this trial. Only time will tell.
Purpose is not black and white.
5:28 AM 2/5/2007
We survived the weekend and that is saying a lot, especially considering Sydney's behavior as of late. She has been, well, difficult to say the least. I am continually amazed by what goes through her brain but day after day we are treated to new surprises in sneakiness and snottiness. She is amazingly gifted at twerpdom. I just can't believe that she is five years old. At times I wonder how such devilish master plans can be conjured in such a young mind and then at other times I wonder that a two year old could be wiser.
I am not at my wits end but I certainly have not found the answer. This is a challenge and it will take time to sort out the answer. Sydney is sneaky and she likes to do whatever she wants to do. I will give an example. Everyday we have nap time around the house. We prefer that she sleeps but at her age she is welcome to simply rest by reading a book and relaxing. The one thing we don't allow her to do is to play with the cat during nap time. We do this for two reasons. First to protect the kitten and secondly she seems to rest better if it is not in her room. If the cat is in her room we are guaranteed to her cat growls and lots of bumping and thumping which nearly always results in waking another one of the children up. For these reasons, the cat is off limits during nap time.
Sydney also knows that the kitten is off limits during naptime. In no uncertain terms does she know, "Do not play with the cat during nap time. Do not have the cat in your room. Run in the opposite direction if you see the cat." It is a relatively simple rule. It sounds simple enough, no?
Well, I can not tell you how many times I have put the cat in a room downstairs, locked the door, gone upstairs to tuck in Graham and Ainsley, and then finally made my way in to tuck in Sydney only to hear muffled cries from the kitten coming from a shoe box in the closet. Yes, you heard me. She knows she is not allowed to have the cat and regardless, instead of listening, she sneaks downstairs to get the cat and then proceeds to hide it in a shoebox in her closet so after we kiss her good night or good nap she can take it out and play with it. After being fooled as many times as possible by her twerpful mastermind I have had to resort to keeping the cat in my clutches while I put the kids to bed. In fact, I have to keep the cat in my sights during their entire nap time because some how Sydney has been able to turn herself invisible, sneak downstairs, and take the cat fro the same room I am in working. She is an amazing misbehaving sneak.
I wish this were the only example of her debaucherous behavior but yet, this is merely one example of her unscrupulous wit. It isn't that she is doing inherently evil things. It is that she is not listening and she continues to disobey no matter the consequences. It is frustrating. I don't want to continually be the mean daddy. I don't want to have to punish her constantly for this insipid behavior. I just want her to listen.
You know this is so much harder knowing what I perfect little angel I was as a child. Of course, I always new what was best for myself. Thankfully my mom had such a sweet little innocent little boy to help her guide her through these times.
Maybe I am starting to see the problem.
Purpose is so complicated.
5:07 AM 2/6/2007
Boy, do Mondays go by quickly. From a work standpoint, I am buried. At home, it was the usual fast paced start to our week. Sydney is in her second week of this semester's speech therapy class. She has a new teacher and a new schedule but she seems to really enjoy it. She is doing very well and she appears to be progressing well. At this point I really don't know how much of what she is working on is an issue of hearing loss and how much is an issue of age. I certainly can't tell from her speech that she has any hearing loss but, then again, what do I really know anyway. She does have problems hearing plurals. The "s" sound is undoubtedly difficult for her to hear. However, we are very lucky in that she still has memory of the sound. She knows it should be there but she just can't hear it readily and she sometimes forgets to put the "s" on the end of a word.
Not knowing how a 5 and a half year old child should speak I really have no basis for comparison. She seems to communicate well with her friends and she doesn't really have any difficulties in school. If I am going by those indicators then I really have to guess that she is about where she needs to be and, in my mind at least, ahead of where one would expect someone to be that has endured all that she has endured. Most issues that we deal with are more a result of her age and less a result of the fact that she has had neuroblastoma and that is a huge point. When we started this journey, we both secretly wondered if we would walk out the other side whole. There was a tremendous list of side effects and the likelihood of her experiencing one was so likely it was almost assured. In this sense, we are so thankful that we are so tremendously lucky.
Yes, Sydney had some hearing loss. BUT, she is here. She is beside us. We are a lucky, lucky family.
I am so thankful for my purpii.
5:43 AM 2/7/2007
Yesterday I stopped by Cook's to talk to another family. This family was in the midst of some fairly critical decisions and have been looking at different options around the country. There's has been a story of doing everything right and yet having the disease just kind of hang out and linger in their child's body. It goes to show that there are no simple and absolute answers in neuroblastoma. If I had to do it all over again with everything I know now I very well would have chosen the same path. They made good decisions. They are smart people. So, why is the disease still there? One of the things that I have come to understand and see first hand has been this group of children that have this non responsive disease that just kind of lingers.
Counter intuitively, this has been one of the groups of kids to fair the best. I think it was Heidi Russell that actually studied a group of these kiddos and found that there is something special about them. I really don't know the answer as to why but I have known several over the years that have maintained a great quality of life for years and years. Some of them never got rid of the disease and others finally achieved a remission, the common thread, however, being that many survived. Another thing that has solidified this thinking has been talking to various oncologists throughout the country. Most oncologists that really know neuroblastoma seem to be more comfortable with this lingering disease and most, when asked, will tell you that it is far less scary than the type of disease that responds almost immediately to therapy (Yes, disease like Sydney's.) I have several theories as to why this might be the case. Perhaps these children fair better because the disease isn't as aggressive. It isn't growing quickly and therefore most chemotherapies are less effective. After all, chemotherapy generally targets the fastest growing cells. Maybe for these kids it is actually a sign of a less aggressive tumor. Perhaps getting rid of this type of disease takes a different approach. I certainly don't have the answer but I know I am not alone in my thinking. Given this you might think using a more targeted approach would work better. Perhaps MIBG or antibody therapy could have a positive effect but even this proves to just provide some stability. What is the answer? I have two thoughts that come to mind with disease like this. The first are bisphosphonates like Zometa. With this slow growing disease hiding out in the bones I think in might be very worthwhile in helping the bone deal with disease. There is a great article on the CNCF site and I think we may even have a video on the subject from back in 2004. Another idea is the vaccine therapy that Sydney is on - although I am somewhat hesitant to write this out loud. One of the problems that I see with the vaccine is that the antibody that they are using to seek and destroy disease (14G2a) is attracted to the same "bait" (GD2) on the neuroblastoma cells. If antibodies are not working for them now, why would it work with the vaccine. I think this brings up the question of why the antibody could be failing. Is it because it is not binding to the neuroblastoma cells? Is that the problem? If that is the case would another antibody potentially work better? Maybe? But, could we not also theorize that the problem is not the binding but maybe the fact that it does not have the necessary payload to destroy the neuroblastoma. (By the way, I am brainstorming here. This is theoretical, not fact.) In this sense, a different payload may be the answer and maybe using modified T-cells could be the ticket. I really don't know. I don't know if this theory even flies but it is something worth considering. This is the question that needs to be asked. I have several other ideas but not the time to go into them this morning. I am at the very least puzzled. It is an amazingly and intriguingly complex disease. I just wish our children did not have it.
Purpose is confusing and tricky and individual to everyone. There is no secret recipe.
5:31 AM 2/8/2007
As far as days go, yesterday did not rank up there as a particularly good day. First off, Sydney began to complain of hip pain yesterday morning. At the time I was thankful because the pain was bilateral. For some reason that was a good indicator for me. I understand that with disease she could have pain on both sides but it is far less likely. So, for this reason, I only became mildly neurotic. (Okay, okay - a little more neurotic than normal then) Regardless, I hate pain in the hips and I hate pain in the femurs. Those seem to be two of the most popular locations of fear for me. Regardless, Sydney had a tough start to the day and it only seemed to get worse with the hip pain.
Lynley and I received a slight indication that the pain could be imaginary. Almost from the moment that she woke up, Sydney was in trouble. She clearly did not wake with a smile on her face. She was grabby and pushy and downright mean to her sister which landed her in timeout tout suite. This was only the start to a serious of events that might lead one to believe that the pain in her hips was actually a cry for attention. We tried using all of the magical tools found in our parental handbag of wit to get to the bottom of the issue but we never really achieved any resolution. Sydney was not herself and she was looking for trouble.
Thankfully by the afternoon when I picked her up from school her teacher had reported that she made no further mention of hip pain. Unfortunately, she also sent Sydney home with a yellow sticker. Everyday Sydney is sent home with a sticker. The stickers are representative of the choices that Sydney makes during the day. A green sticker means that she made good choices, a yellow sticker means that she made some bad choices, and a red sticker means she made some really bad choices. This was the first time that Sydney had ever been sent home with anything but a green sticker. The first report was that she was being a kitty and spitting in another child's face. I was angry about this at several different levels and it took a while to sort through this with Sydney. Eventually I found out that there really was no spitting involved. Occasionally when Sydney gets mad she makes and angry cat hissing noise. It isn't a pleasant sound and she has been told not to do it before. However, she thinks it is funny and a great way to express the fact that she does not like something. After all, that is what kitties do and when they are around Sydney they seem to do it quite a lot. Regardless, I don't like the sound but it isn't the end of the world. The problem ultimately comes down to the fact that her teacher asked her not to make the sound any longer and she did it again a little bit later. It was her lack of listening skills that earned her the yellow sticker. It sounded all too familiar and I was glad that the issue was coming to the forefront. Perhaps, this would be an excellent opportunity to address several issues, her inability to listen and her making mad cat noises. Yesterday evening was not good for Sydney. She received appropriate punishments and spent the majority of the evening in her room. We also gave her the mission to create something special for her teachers to tell them how sorry she was for not listening.
In the end I think we made some progress. I really had the opportunity to connect with Sydney. In the everyday grind we don't often get to make that real emotional connection that seem to be sparked through traumatic experiences. I don't like that Sydney received a yellow sticker but I am thankful that we were able to work through it together and that we made that connection.
Yesterday morning I knew something was wrong. I suppose I could have done more to get to the bottom of it before it escalated at school. I don't hold myself responsible but it does remind me what is important.
I can't let my purpose get in the way of my purpose.
5:43 AM 2/9/2007
Yesterday was a better day all around. I am glad to report that we did not have any phantom pain and Sydney appeared to have recovered from her yellow sticker incident. Ironically, her entire class received a yellow sticker yesterday afternoon but the teacher was quick to point out that she saw a 100% improvement in Sydney's listening skills. Ultimately the class received a yellow sticker because collectively they were a little crazy yesterday afternoon. Apparently 5 year olds have a habit of being a little crazy and not always thinking before they act. As far as I am concerned this is really comforting to know. I was beginning to think I had substandard genes. Of course I never would have admitted that. I probably would have placed the brunt of the blame on the chemotherapy which clearly soured our obviously incredible gene pool.
On a separate note, I have had several people write to me about the drug, dichloroacetate (DCA). There have been several articles about it appearing all over the world in the last month. In fact, here is one:
I haven't been ignoring my messages. Short of reading the article I just haven't done the research to talk about it intelligently. In all due honesty there are several cheap and supposedly safe drugs that can kill cancer cells. However, it is always more complicated than that. That is not to say that DCA won't turn out to be effective. I have just seen many of these agents that seemed to have this great promise that turn out to be more hype than anything else. The article does make some interesting points and it does seem to have a reasonable mechanism of action. However, outside of this article, I just don't know if any of its claims have been substantiated. I am going to start researching the drug this weekend and I will hope to have some solid information and a pretty thorough understanding of it next week. Based on this articles claims there should be some substantial support in the reviewed medical journals.
Well I best be off. It is the end of the week and, as usual, I have a mountain of work to get in before the closing bell.
Here's to a weekend of purpose.
5:17 AM 2/12/2008
Good morning! I know many probably stayed up watching the Grammy Awards last night. However, what you should have been watching this weekend was the Addy Awards. What are the Addy Awards you ask? Well, it is only the most important awards gala in the entire world. It is the advertising and marketing awards gala and I am happy to announce that the Lunch for Life materials won the Best in Show for the Children's Neuroblastoma Cancer Foundation beating out over 400 other entries. Yes, Saturday night Lynley and I got dressed up in our best duds for a night on the town a trip downtown to the 2006 Addy Awards Gala. It was the first time that Lynley and I had been out together alone in months and we made the night of it. To be honest it was almost embarrassing. Not only did the Lunch for Life materials won several gold Addy's for various aspects of the marketing campaign but it also won the top honor, Best in Show. So what does this mean. Well, I guess it means our advertising firm, GCG, really does know what they are doing. I never really had any doubts but it is always reassuring when your marketing campaign is appreciated by the advertising community at large.
All in all we had a great evening. Although the press coverage at our local Addy Awards Gala was not exactly like that at the Grammy's and although their weren't people screaming Lunch for Life as we made our way down the red carpet I can still call the night a great success. I am also happy to report that the kids at home were perfect angels for their DeeDee, our babysitter/prison guard. Hearing that news was almost as good as winning the Addy. If you would like to read more about the story it can be found here:
Now, all we need to do is to turn all of this great advertising materials into millions of lunches.
It is nice to have our purpose recognized.
4:55 AM 2/14/2006
Yes, I know, I missed an update. It is a really long story. Regardless, I am back and we are all safe and sound. We just had a little hiatus - so to speak. Due to a clerical error our electricity was shut off the night before last and it took about a day to get it all straightened out. I was absolutely amazed at their unwillingness to help straighten out the issue even though they admitted fault. In short, they cut off the power. I called them. They discovered the error. They said they would turn it back on - tomorrow. I said I had 3 small children and they needed to do it now. They said - no. All in all, I think I have identified a group that is almost as deceitful and deceiving as BCBS. All I can say for sure is that I will no longer be a Gexa energy customer any longer. In fact, my mission is now 3 fold. I want to be a great daddy and husband, I want to help other families and children with neuroblastoma, I want to find a cure for neuroblastoma, and I want to let everyone in the world know how horrible and dishonest Gexa Energy is. Yes, it is a rather odd addition to my life goals and achievements but what are you going to do.
The good news is that the kids had a spectacular time and took the whole thing right in stride. They thought it was great fun. It was like a vacation for them. When the going gets tough my kiddos get celebrating. We are back in the midst of a pretty interesting week. It has been busy already and I really don't see any slowing down. Today I get to learn all about oncolytic viruses and neuroblastoma. It will make for a very interesting Valentines Day.
No matter what life throws at us our purpose gets us through.
5:25 AM 2/15/2006
We survived Valentines Day. As a daddy I am happy to report that there was no inappropriate groping or hugging at school. Sydney made it through without any kisses on her cheek or any boy cooties whatsoever. That is a huge milestone for the year that we just motored by. In fact, other than my birthday, I think that is the last romantic holiday until next year. Let's see, Monday night football games, the Super bowl, and Valentines Day - yep, all of the romantic holiday are over.
The kiddos are doing pretty well. They have all experienced the ups and downs of whatever sickness is floating through the air but the have remained out of the doctor's office. Ainsley has probably been the worst and Graham has been next but Sydney has so far weathered this wave of illnesses at school and around the community with little more than a sniffle.
Lynley and I are still in the midst of coordinating Sydney's latest round of scans and we still have not made any firm decisions about the vaccine in Houston. Ultimately I think we will do it but we still have not fully committed. I am still waiting to hear back from the team at Sloan. While waiting for their vaccine to get delivered (which still appears to be months away) they have actually mentioned the Nestle vaccine to some of there other patients. I think everyone has been impressed by the fact that they have seen some response.
I had best be off. There is still a mountain of work to do this week. My purpose is in high gear.
4:10 AM 2/16/2006
Wow, it is Friday already. Time really flies when you are busy. In fact, I have been busy doing everything but finishing up on what I committed to spend this week working on. Some how it just did not work out. In the end, I am just another week away from finishing up my presentation to the NANT. My presentation is officially entitled "Parent's Views of Clinical Trials" I have spent about 6 weeks collecting thoughts and ideas from various parents across the Untied States. In all I think about 35 have weighed in. I have also spent much of my time talking to representatives from various internal reviews boards, the FDA, and several pharmaceutical companies. Finally, I have passed my ideas past several oncologists and investigators. It has been a long and interesting process but one that I want to nail. Of all of the presentations I have given in my life I think this one is one of the most important. I don't want to come across as just another dad complaining about the same issues that have been debated for the last ten years. I want to provide insight and propose solutions which are based in reality and can have genuine real world impact.
There is a common thought that has run through the mind of just about everyone that I have talked to. We need more answers - quicker. Ironically, it has not only been the parents of children with neuroblastoma that have shared this theme but it has been the investigators and researchers as well. I think everyone is frustrated by the pace, the lack of resources, the lack of patients, and most definitely, the lack of answers. I assure you, everyone would be happier if we could find a solution more quickly, doctors and patients included. This comes at a time when budgets continue to be constrained and in many cases cut completely. In fact there is a video story on ABC news from yesterday that drives the point home. It can be found here:
The scary part comes near the end when you are hit with the realization that childhood cancer research will be the first to have its funding cut by the Bush plan.
So, the question becomes, in a time of ever shrinking resources how do we hasten the cure. Believe it our not, there is hope. There are things that we can do. I know it sounds cliché but we need to work smarter - not faster. As the research landscape changes due to constrained funds the research community has to become more nimble. In many ways this will benefit us - the families - as we become more center stage. We wield two important weapons for research. Working together we bring the patient population - the subjects - and those even harder to find dollars. These are two of the most important ingredients to research. With this leverage we do have power. Bottom line, even in times of financial stress, we can make huge strides. We just have to work smarter.
Purpose and direction can be powerful weapons against cancer.
5:38 AM 2/19/2007
Good morning! We survived another weekend. Thankfully in finally warmed up a bit and we were able to get the kids outside. Running around the yard and climbing trees are an excellent way to burn energy in these little balls of sugar. I am so happy to once again have the weather on my side in the battle of sanity here at our Fort Worth based loony bin. All in all things are going fairly well with a couple of exceptions. Ainsley continues to battle the never ending running nose. She is now going on two weeks of the condition. Although we have kept the decongestant flowing we simply have not gotten to the source. At some point it has to stop. She can't possibly have that much more snot. It just can't be humanly feasible. Regardless, other than the fact that we chase her around with a box of Kleenex she really seems no worse for wear.
Our other issue just began to raise its ugly little head before the weekend. Sydney is beginning to complain of odd little aches and pains and her color seems to be a little off. I have finally grown past worrying about absolutely every little ache and pain and I have learned to watch for repetition. It is still difficult to achieve but a little patience goes along way. Regardless, she is pale and has been complaining about pain in her abdomen. She repeated this routine for a few days and then added complaints about her throat to the mix yesterday. The throat complaint actually made us feel better. At least all of these symptoms could be blamed on an ailment other than cancer. Still, we are quite a ways out on her last set of scans and it would be nice to get some supporting evidence that this is not disease related. Scans are just three weeks away but due to some scheduling errors 6 weeks later than they should be. It goes without saying that we would really, really like to get them behind us. Until then, we are just hoping to see her color return and for her to get beyond whatever this is.
I can't figure out whether nail biting is a symptom of purpose or the cause.
5:55 AM 2/20/2007
You probably won't hear this very often, but, "Yeah!!" Sydney is sick. I know it sounds awful but I am much happier being able to blame some of her quirky aches and pains over the weekend on a real live non-life threatening illness. We still do not know what she has. Her throat is red. There is coughing and her nose is running non stop. We even have some bonus lethargy. I don't really know what is up. It could be any one of a myriad of illnesses floating around the schools. The good news is that it is most likely just that - some benign sickness with some aches and pains. That, in and of itself, is a big stress reducer for us all. Doesn't that just sound horrible. Regardless, if she has to show signs of sickness I just assume it be something friendly like strep instead of the nasty disease we all fear.
Yesterday Sydney was out of school so she spent most of the morning at home. She then ventured out on a date with DeeDee where they did things like color, play beauty parlor, run errands, and visit the movies. Graham still went to school and seemed to be just fine with that. Yesterday he was wearing his favorite Superman t-shirt and as long as that is on his back he seems to be able to face the day. I think he is slightly under the weather but, all in all, seems to be weathering this storm a bit better than the girls. Ainsley is just happy to be up to her usual good natured ribbing. To this day she is still under the belief that she is an only child and absolutely delights in torturing the "help" as she likes to refer to her brother and sister. She is incredibly quick and I dare say the smartest of all of the gaggle of Dungan's - including Lynley and I. She seems to be able to push herself to the limits without frustration and is as much a sponge as one could be. She is only 20 months and is already putting on her socks and shoes faster than her brother and sister. She also seems to have an insatiable wit that keeps us rolling with laughter. She clearly does things to enrage her brother and sister and then handles it with such innocence that you almost believe it were by accident. This is until of course she turns around to look at her mother and I to give that grin that says - boy are they gullible - or probably more accurately "suckers."
Well, I had best be off. I am still working on my presentation to the NANT and I have several other irons in the fire. It will be another busy day around Dungan central.
Purpose lives on.
5:27 AM 2/21/2007
Well the report is in. Sydney visited Dr. Debbie yesterday in the late morning and a virus has been confirmed. Furthermore, Ainsley has identical symptoms and Graham,. too, is beginning to show signs of sickness. The bad news is that I have 3 sniffly, coughy, droopy kiddos. The good news is that I think this pretty much rules out several of our worries regarding neuroblastoma. Additionally, I now know enough about neuroblastoma to know that it probably will not show its symptoms in the patient's siblings. What a relief:)
Today, I will be meeting with a newly diagnosed family. It seems like I run into more and more of these families. I now talk to about 1 or 2 new families every week. Generally speaking we find each other over the web. Many times I receive email introductions from family and friends who would like me to contact the family. In today's case I received word about this family from about 4 different sources. Eerily enough a member of their family met Sydney and I in LaGuardia on one of our trips to Sloan Kettering. We were sitting right next to them in the airport and, for some unknown reason, just began to talk. We had much in common at that time. We both knew some of the same people and even one of the families that happened to be at Cook's in the ICU at the time. Regardless, it was an interesting conversation and at the time I remarked to Lynley when how strange it was meeting these people in a New York airport of all places. What a small world. It became even stranger when a relative of theirs was diagnosed with neuroblastoma.
So, today, I will get to meet with them for a bit to talk about neuroblastoma and their family. The little girls name is Sadie and she is 4 months old. You might think that her age would be a good sign. Ordinarily it would be but given some of the characteristics (NMYC amplification and biology) of her tumor she is placed at high risk. Unfortunately, in this rare case, she is no better off than a child who has been diagnosed after the age of two. This family needs all the help we can muster. Thankfully Sadie appears to be doing well. I met her briefly on Monday at Cook's clinic. She has finished her first round of chemotherapy and I was happy to see them out of the hospital. She was alert and even gave me a few smiles. That is success for me at this juncture.
Regardless, I will be meeting with the family this morning. I hope to show them that there is hope and that they are not alone. I hope to help them find some normalcy and some grounding so that they can focus on their daughter without feeling out of place or confused. I hope I can help them find strength and courage. After all, we are one big family.
This is what purpose is all about.
6:12 AM 2/22/2007
Good morning! Please bear with me. I stayed up late last night working and I am a little slow this morning. Yesterday was another pretty good day all things considered. I finally had the opportunity to really sit down and talk with Sadie's parents. Talking to other families is one of the most rewarding things that I have ever done in my life. However, it is also one of the most challenging. Having lived through a common experience such as the diagnosis of neuroblastoma we form an almost immediate bond. There are feelings that we parents' have that no one else can really understand. These feelings and this existence is very specific to those of us diagnosed with neuroblastoma. That is not to say that common bonds are not formed with parents whose children are diagnosed with any type of life threatening ailment. The point that I am making is that the bond, the emotions, and the journey are very much specific to the disease. Speaking with this family brought back so much of the raw emotion and feeling that has dwindled with time. I had forgotten much of the thought process and sense of helplessness. It is such a difficult balance to arm them without scaring them or putting them in a state of information overload. There is so much to learn and it feels like there is so little time. I did my best to give them confidence in their plan. I tried to arm them with hope and the resources to find out more as they needed. Finally, I challenged them to not be afraid to ask questions. This family has strength. There is no doubt in my mind that they will find the strength to get their family through this. In the meantime, I will keep them and little Sadie in the forefront of or prayers.
With hope and purpose.
5:37 AM 2/23/2007
Boy has this week flown by. Here it is and we are already sitting at the footsteps of another weekend again. The Dunganlets are all doing fairly well. Sure, they are still all sniffly but the good news is that it has not seemed to phase them one iota. They are still up to their same old tricks. At times I feel like I live with the three stooges. Yesterday afternoon I was watching them all play in the playroom. Ainsley was playing with one of Graham's toys - no shocker. All of a sudden Graham realized this and went over to steal it away. Anticipating his move Ainsley made a step in the opposite direction and fell into Sydney. Sydney pushed Ainsley off of her back into Graham. Graham fell backwards onto his bottom. Graham took his hand and hit Ainsley on top of her head. Ainsley did the same thing to Sydney. They all began to cry. Of course I had to step out there and separate them. Before I could get a word out I was already being belted with "he did its" and "she did its" with more pushing and shoving. I called time out and gave standard lecture 81. (with this many twerps you need a good set of standard lectures) A few minutes later they were all happily back in a row playing their individual games in the playroom. It was not one minute after that and whole process started over again. Although they love each other very much, I am amazed at the things they will do to each other. I hate to say it but it is like watching Dumb and Dumber and Dumberer.
You know, for obvious reasons, I place a high priority on family and togetherness. In my mind there is nothing more important than family. It always comes first. However, with all of that being said I just don't know if we will survive it.
Purpose - well, she started it.
5:10 AM 2/26/2007
Sunday marked the Dudester's 3rd birthday. Yes, my little man is growing up. I spent a little more one on one time with Graham this weekend. With the daily hustle and bustle, it can sometimes be difficult to find extended time to focus on my little man. This weekend, however, was his and I stayed as focused on him as I possibly could. Being stuck in the middle, he rarely gets the opportunity to shine on his own. Too often it is about his heroic older sister or his too cute little one. Rarely is it all about him. This weekend, however, was. Graham had a great time.
Grahams birthday party was on Sunday at Chuck E. Cheese. Now I can think of a hundred places that I would rather have a birthday but for Graham this was the ultimate in partydom. This was birthday party Mecca and, quite frankly, there is nothing that can even slightly compare. It is pomp and circumstance and fit for 3 year old kings. Dudely certainly felt this way. However, Graham was the consummate host. I was so proud of my little birthday party concierge. He had an absolute blast but was also dedicated to ensuring that his friends were having fun as well. In short, they all had a wonderful time. In fact, I would go as far as to say that this may have been the best birthday party in the history of the world.
The rest of the day was filled with fun for all. After naps we would open presents. Graham delighted in his mountain of gifts. His favorite I think was his new Spiderman bicycle which he proudly and gallantly rode completely around the block. Other's included toy cars and clothes and another favorite, his fireman outfit. He spent the afternoon saving us all from random tragedies. Later that evening the Robertson's would visit and share a meal with us. The kids all had an incredible time. All in all, I think this has to go down as one of the best birthdays ever. This weekend Graham was king and he fit the bill perfectly. I was so glad to see him shine.
With such a gaggle of purpii, it is nice to take one out every once in a while and watch it shine alone.
5:31 AM 2/272007
Well, fun weekend is over and we are back and into the grind. Although I have been working on my NANT presentation for some time I am in a rush to put all of the finishing touches on it. I don't want to make this more than it is. However, I do have some important things to say and it is important that I adequately represent the other families out there. The fact is that I do have some really key points and I want to make sure that they come across. The problem is that I only have a short time to do it. Ultimately, I think everyone feels that we have to move faster, oncologists and investigators included. The problem is that, in a time of limited resources - patients and dollars - we have to work around our hurdles to further research. I think I have done a pretty good job of illustrating the different problems that exist within phase 1 research. I have collected about 10 key issues. They are:
Perceived lack of benefit
Too many treated at doses below biologically active levels
Too many single agent trials
Eligibility criteria too strict
Lack of information/Trial transparency (ethical dilemma)
No inter patient variability information
No cumulative toxicity data
3+3 trial statistically inferior
After months of researching and meeting with people from all over the world I have identified several potential solutions to many of these problems. Now, don't get too excited. I did not come up with all of these on my own. I am an expert plagiarizer. I simply studied what worked in researching other medical conditions and stole their ideas. In the end I have a pretty substantial list of suggestions that have a proven track record of speeding the cure. I am not brilliant - I am an excellent copycat. Here is a list of some of the suggestions that I am proposing. They are:
New Trial Designs
New Agent Prioritization
Add trials with therapeutic backbone.
Patient Advocate Trial Review Board
Reduce eligibility requirements
Expand consortium with tier 2 sites
Education – Patient and Physician
Testing for therapeutic misconception/misestimation
Unlocking Trial Transparency
The problem is each one of these suggestions is based on mountains of research. I can go into great depth on each topic and it is a matter focusing on what is important. Much like those that do neuroblastoma research I have a mountain of work to do and limited time to do it in. For example (on the first topic) it isn't that I just want them to pull new trial designs out of thin air. There are literally decades of research that show that the designs currently used are statistically inferior to much of what has been discovered in the last 25 years. Inherent in the existing designs are a myriad of other problems which not only produce poor statistical data but also keep our researchers from gaining some important insights. Most importantly the current design limits the benefit that can be achieved by our children. A simple change in methodology would greatly enhance the information obtained and tackle about six of the problems that I identified before. In short we could answer research questions with less overall patients in less time while ensuring more kids are receiving adequate dosing of drug, we are receiving cumulative toxicity data, and we are getting important glimpses into inter-patient variability. This single change would likely increase the accrual rate and hasten research. Oddly enough this isn't even nearly the most important thing I have to talk about.
I guess that is what makes me nervous. I have a bunch of truly great things to say but not enough time to do it effectively. Now I am starting to feel the pressure of a neuroblastoma researcher.
We all have purpose.
5:54 AM 2/28/2007
Once again, I find myself buried in research with little time for anything else. I am happy to report that all is well on the Dungan home front but I am racing to get the final lpolish and wax on my presentation to the NANT. A more thorough update will have to wait until tomorrow.
4:45 AM 3/1/2007
Well, I can't exactly take a deep breath but I am feeling much better about my presentation to the NANT. I am just making some last minute decisions on things that I want to keep in my presentation and things that will remain on the cutting room floor. One of the things I am mulling over in my mind is whether I want to keep a homemade movie about "Trial Transparency" in my presentation. Yes, I know, it sounds a little bit out there. Since I don't know if anyone will ever actually get to see it I guess I will post it below for a good laugh. However, if you get to laugh, the minimum I get to do is tell you a little about why I wanted to put the video into my presentation in the first place.
The subject is Trial Transparency. Trial transparency is a very complex issue about a very simple concept - giving safety and response data out before a trial is completed. Before recently I was very against trial transparency. My thoughts were that if you did give out information before a trial was completed you could impact accrual (getting patients onto trial) and really bias results. There are other issues as well but these are two fairly important ones. Regardless, if a trial did not have any responses or if a trial had some severe toxicities you certainly would not want that information to get out. The trial would never be completed. However, when we are dealing with human beings, and kids mind you, isn't there an ethical and moral obligation do disclose that information? How could we possibly be well informed to make a decision for our children if that information was kept from us? Furthermore, is not the opposite of that true as well? If there were responses, would we not have the right to know if we were going to put our kids at jeopardy? How can we weigh the risks and rewards of a treatment if we don't know how others are fairing?
I think the big concept to get through is the fact that we are talking about phase 1 trials or dose finding trials. Just because the trials primary aim is at finding a maximum tolerated dose without severe side effects, it is delivered to children in the hopes that it will provide some benefit. It isn't answering a question of efficacy. If this is the case then what is the problem of disclosing information related to how children are reacting to a concoction. Sadly, it has nothing to do with the actual purpose of the trial.
Anyway, volumes have been written about this subject and most advocates of children argue that investigators have the obligation to disclose as much of this information as possible. A few of the official opinions sound like this:
"Study subjects are put at predictably varying levels of risk, governed by the earliness of the cohort into which they are enrolled" and "A subject of a study is entitled to a full and fair explanation of the risks to be faced. Inherent in that is the requirement to provide a subject with as realistic, complete, and up-to-date an exposition as possible of the risks and benefits he or she will, as an individual, face."
It just should not be this hard. It is actually simple. We are simply trying to make a decision regarding the best course of action to save our children's lives. In an effort to illustrate this concept another father emailed me a sample discussion of what he was looking for in trial transparency. I decided to make a video out of this little "script" in order to break up some of the monotony of my presentation, to add a little comic relief, and to illustrate what we were looking for more clearly. I want them to laugh - but think - "It really is not too much to ask". Why can't it be this simple? Oh, and by the way, you may think it is really like this. In short, it isn't even close. You have another thing coming. Regardless, the video is shot in the old 1950s and 60s training film style. I hope you like it (and yes, I am trying to be that corny).
Either way, I don't know if I will include it in my presentation but I don't want to make my hard work go to waste. You can view it for a good laugh on the website below. Enter the site and simply click on the first (and only) video in the album.
By the way, if you think I should keep it in my presentation feel free to drop me an email at firstname.lastname@example.org.
5:04 AM 3/5/2007
I am back from a whirlwind weekend at the NANT and, I have to tell you, I am still in recovery mode. Unfortunately, I didn't have much time to recover and we are already back into the swing of things. Early this morning Sydney will be heading over to Cook's for another round of scans. This morning she will be having her bone marrow aspirate and biopsy. Contrary to our last round of scans we have no reason to be especially concerned about these. However, we also remember that when it is expected the least it has struck us twice. So, regardless, it will be a nail-biting week. I still despise the waiting of scan week. It is as if life comes to an immediate halt. My ability to focus is lost. I struggle to keep the worry and "what ifs" out of my mind and eventually it always seems to win anyways. Regardless, I will be thankful when the waiting is over.
This year I felt that the NANT was an even better experience than it was the year before. I won't sit here and tell you that I was pleased to come away from the experience with that feeling that they had discovered the cure but I will tell you that I am hopeful for other reasons. In my opinion it seems that years of research are starting to pay off. They are moving some interesting drug combinations forward which I think could help to ultimately save lives. Are they new ideas? No. But are they ideas that are finally getting their place among the patient population - yes!
Going to the NANT this year was a tremendously interesting experience. For the first time I had the opportunity to view much of this science through the eyes of other fathers of children with neuroblastoma who also held medical degrees. It was an incredibly interesting perspective. I think the best part of it was that I had the opportunity to immediately digest the information. Usually it takes me some time to process information regarding neuroblastoma research. Without a formal medical background I have to follow my trips to these medical conferences with far more research in order to fully process what I learned. Purely by osmosis I was able to almost immediately pick up much more of this information. This was good because I was able to ask questions that would have normally taken several more days to come up with. It was great to have other minds wrapped around the subject and even better that their minds were faster than mine.
My presentation went very well. I had an incredibly short amount of time to make some very complex arguments. That was my ultimate problem. Fortunately, I think everyone understood that and were very receptive. To pat myself on the back I was even asked if I would be interested in publishing my data. The video was a huge hit and I was glad that I had included it. Thank you, one and all, for the email encouraging me to use it. I think the thing that I was happiest about was that we have already begun to see some real change. Some of my ideas have already made the transition from paper. It will be interesting to watch them come to fruition. I was happy to see how welcoming they were to the ideas. Now comes the business end of trying to implement them. Of course there will also be further research and discussion as we work through some of my more complex topics. Over the next few days I hope to go into more detail but one of the most important things to me is to change how we are doing phase 1 trials in our children. Great science does not always make for great therapy. I argued that although my changes may be somewhat more difficult to implement the benefits to our children could be dramatic while also improving the science. Let's just hope we can see the discussions continue.
Well, I best be off. As you might imagine this will be a nail-biting day. Our purpose is making progress.
5:37 AM 3/6/2007
I think that yesterday must have been neuroblastoma day up at Cook's. Three families were up on the floor of the hospital and even more were running around the clinic. Our day became more complicated as the morning went on. First off, unknown to us Sydney had been scheduled to have her bone marrows done with conscious sedation. I don't know about others feelings on this but we quickly nixed this idea. I don't think there is any reason not to completely anesthetize her. After all, she has to have posterior and anterior (front and back) bilateral (both sides) bone marrow aspirations and biopsies. That is four little holes drilled (actually corkscrewed) into her hips and I can't image trying to do that with conscious sedation. Thankfully everyone else saw our point of view and she was quickly scheduled for a table in outpatient surgery instead of the clinic.
The good thing about this is that it gave me ample time to talk to Dr. Eames about our plans with Sydney. Finally, I had all of the brains in the same room and we could talk intelligently. We spent a good while discussing the positives and negatives about the vaccine trial in Houston. I don't know that we are any closer to a decision but I think Lynley was thankful for the input. I am hoping that today she will have the opportunity to meet with Heidi Russell. Once she has done that I think we can finally sit down and hash this out. I am still hoping that we will do it but she and I have to come to a meeting of the minds. We have to balance quality of life with, well, life.
After our thorough discussion with Dr. Eames (and yes it will go down in the chart as "another LONG talk with the Dungans") we made our way over to the hospital where we committed ourselves to waiting for a slot in surgery. Thankfully it was not too long. Sydney was out of recovery by noon and everything seemed to go smoothly. Now is the hard part for us - the wait.
The purposeful nail-biting has begun.
5:45 AM 3/7/2007
As of last night we had received news that Sydney's marrows were clear by morphology. Both Lynley and I took a big sigh of relief but more studies await. Today Sydney will have a slew of tests including a CT scan, bone age, EKG, etc. It will be a busy, busy day for our little girl. Tomorrow she will have her MIBG scan so ass you can see we still have some hurdles to overcome. I, myself have been under the weather and am struggling to stay in the land of the living. The little rugrats have finally caught me in their web of germs. It looks like it finally caught us all. Regardless, I just wanted to let you in on our preliminarily good news.
Purposefully sitting with fingers crossed.
4:24 AM 3/8/2007
Good news! The CT was negative! Now we are nearing the end of the race with only a few more results to come. Sydney had another busy day yesterday. We packed alot in yesterday morning. She had her CT scan, EKG, ultrasound, bone age, and her MIBG injection. This morning will be the last of her exams. She is due for her MIBG scan at 9:00 AM. After this we will be back to simply sitting around and waiting for the last of the results to come in. I have mixed feelings with the MIBG. During her supposed relapse we never saw even the tiniest smudge on the MIBG yet I know many who have relapsed with just MIBG findings. For this reason, I never count my chickens before they hatch.
Yesterday Sydney was a trooper. Of course, now, I have come to expect nothing else. The highlight of these days at the hospital is always in seeing who Sydney will want o tell a story to her while she is in the CT scanner. It is totally improvisational so it is always a challenge and Lynley and I spend the majority of our time trying to convince Sydney to get the other parent to tell the story. I always lose and it becomes a game of trying to include Lynley as an evil witch or a frog in whatever story I tell. What can I say? It is a fun family activity. Nobody ever said us Dungans were completely right in the head.
With MIBG today it will mean a 30 minute story off the cuff. Something tells me I will be back in the position of story teller. I had better start thinking now so that I don't come off as the frog.
Isn't purpose grand.
5:58 AM 3/9/2007
All clear! Yesterday afternoon I received a phone call from Dr. Eames and all of the results are in. We are officially all clear. We get to breathe deeply for a few more months before we begin this all over again. I am ecstatic to say the least. No matter how far we are out of treatment I can not tell you how good it feels to hear those little words. We will have to figure out how to celebrate this weekend. I am still on the mend. Well, actually, I do know that I can even say I am on the mend. I can, however, say that I don't feel as though I am getting any worse. In that sense, I am on the road to recovery.
This weekend will be a needed rest. I feel like I have not slept for the entire week. Now we can catch up and focus on all of the things that need to be a priority. Lynley and I have still not come to terms with the vaccine trial in Houston. I am hoping that she will be meeting with Dr. Russell today to discuss it at more length. I think she is beginning to lean towards the idea but I don't want us to make the decision until she is comfortable with it and feels like she has investigated all of the avenues. Decisions in this world are funny and I often wonder if we make decisions because we really believe that they are in our child's best interest or, rather, if we could live with out making the decision if she ever relapsed. That bar seems to be the best gauge of some of the decisions we have made. I am not going to sit here and advocate one way for it or against it but it is certainly a reality that exists in the back of my mind. It is funny, in preparing my presentation to the NANT regarding parent's views of clinical trials I talked about making these very decisions. I talked about some of the common problems with making a decision to put a child into a phase 1 trial. I talked about misconception - the belief that the therapy is primarily therapeutic when in fact it is not. I talked about misestimation - not understanding the true risks of the treatment. Finally, I talked about optimism - the less than rational belief that we will be one of the ones to respond against overwhelming odds to the contrary. The factor that I did not talk about when thinking about placing a child in a clinical trial was guilt. The inability to look back on your decision and honestly say you did as much as you could. It is a fear really and I guess I am more sensitive to it because I have known so many families that have lost their children and it seems to be a common thread between them. They all seem to kick themselves that they should have done something differently. They should have tried something else. I know it is not right. I know they did everything they could. However, guilt is not always a rational feeling. I always try and tell everyone to make the best decision that they can. I tell them that there are few wrong choices when it comes to questions like these. Unfortunately we will never be able to live in hindsight. In the end, we have to live with these decisions. We have to live with them if our children respond, we have to live with them if they don't, and we have to live with it when something goes wrong. It isn't easy especially when we believe every decision is a life or death one.
Purpose can be rewarding but it isn't easy.
6:17 AM 3/12/2007
Good morning! I survived the weekend which is actually quite surprising. The wife and kiddos put me to work on the playset this weekend and every muscle and bone in my body hurts. Yes, there were boards to repair and screws to replace. We even moved the entire structure off of its foundation. In the end the kids have inspected it and are quite happy with their restored playhouse. Unfortunately, I now need to be restored as well.
This week Sydney is off from school for the entire week. Thankfully Lynley even gets a few days off near the end of the week. The rest of us will have a full week and I am even flying to Vermont on Thursday for a neuroblastoma symposium. It should make for a very busy but interesting week.
Well I had best be off, there is a mountain of purpose before me.
6:26 AM 3/13/2007
Good morning! All is well on the home front. Martha brought one of her nieces over yesterday and Sydney had an absolute blast with her new playmate. I must admit. It was smart on Martha's behalf to come prepared with a real live Sydney distraction. By the time I arrived home Sydney was completely exhausted from a full morning of activity. She was ripe for a nap and fell asleep almost immediately. She slept most of the afternoon away. When she and Ainsley awoke it was time to pick up Graham from school. Not long after that mom was on her way home from work.
I must admit I did play a bit of Daddy hooky last night as I have a pile of work to get through. Lynley took over and gave me the opportunity to get some things done on the computer. The NANT Consortium meeting was extremely successful but it left me buried in work, both the work that I missed from the days I was preparing my presentation and for the mountains it added onto my plate. In the end, I was finally able to finish some outstanding projects.
Today is another huge day of playing catch up for me. I am working on putting together the NANT Trial Review Board. Dr. Seeger has sent me some of his ideas on the subject and I am researching other boards to find out what has worked and what has not. I am hoping to come out of today with a reasonable proposal of the responsibilities that would be held by this group and exactly what there mission would be. It should be some fun research.
Until then, there is plenty of purpose to go around.
5:33 AM 3/14/2007
This is one of those mornings that reminds me, all too vividly, of the world we live in. A couple of times a week I visit various websites to catch up on our many neuroblastoma friends. I do this for many reasons but mostly because I just need to know. So many of these children have become a part of who we are. It is hard to explain but when your child is diagnosed with neuroblastoma you get a very special membership card to a group of the most loving and caring group in the world. There is an immediate bond and understanding that is unlike anything I have ever experienced in my life. We hold the common bond that our child has been diagnosed with neuroblastoma but it goes much, much further than that. There are certain feelings and emotions that are felt by every person in this group that are not shared by others. This is not to say that parents of children with medullablastoma or AML don't also share a special, common bond. It is just different than the one that we feel. Some of the feelings are similar but many are very different and it is the differences that make these groups so unique. There is something that binds so deeply when you can talk to another parent and say, yes, my child had that same kind of disease and took those same drugs and felt this way. It is even more powerful when you can show them Sydney or another child who has so far beaten the odds. It is a bond of hope like no other. There is an immediate kinship. We are a family of sorts.
It is for these reasons that mornings like this are so devastating to my psyche. It absolutely tears me up to see so many of the families I follow all receiving such bad news. Some are relapsing, some are progressing, and some are slowly running out of options. It just tears me up inside. Even though we have lived it everyday for almost 4 years it still sears just as deeply and I still wonder how this could be happening to our children. How can finding a cure for cancer for children not be a priority in America? How can they continually cut the budgets for research? It just does not make any sense at all.
Tomorrow morning I will be traveling to Vermont for another symposium on neuroblastoma. There will be several other parents of children with neuroblastoma attending as well. We should be getting a broad and worthwhile overview of what is happening on the neuroblastoma treatment front across the states. Kate Matthay (UCSF), John Maris (CHOP), Shakeel Modak(MSKCC), Sholler(UVM) among others will be making presentations. I am hoping to hear some "official" information to come out about the Nifurtimox trial and quite frankly I am hoping for some frank and open discussion on the topic although I doubt we will hear it in public. Most importantly I am looking forward to a meeting of diverse but open neuroblastoma minds. The more the smart ones get together to talk the better chance we all have at finding a cure.
with hope and purpose...
5:40 AM 3/19/2007
Finally, after a foot of snow and a day of delays, I am back from Vermont. However, I do have to admit, had it not been for my desire to see my family I could have stayed indefinitely. We apparently visited Vermont during one of it's ugliest seasons, the mud season, but had I not been told I never would have known it. I thought it beautiful and a breath of fresh air. From the moment I stepped off the plane with David Podeszwa (another father of a child with neuroblastoma) we wondered why we still lived in Texas. Ultimately, I found the green people of Vermont to be outstandingly kind and neighborly. I will make another trip there this year if for nothing else but a vacation.
This Vermont trip was one of the most important that I have taken in our quest to defeat neuroblastoma. I can't really say that I learned much new. In fact, one of the most interesting presentations that I heard had very little to do with neuroblastoma at all. The second most interesting presentation from a scientific perspective actually came to me from another father who was at an oncolytic virus meeting in Phoenix. This is not to say that this meeting was not incredibly important. It was, just for different reasons. Overall I think I received a great overview of the various options that are available to our children. I feel more secure about my roadmap for Sydney. For those that may not remember, my roadmap is my little instruction booklet for what our options are should Sydney relapse. Unfortunately, I don't know how confident I am in my plan but I do know that the roadmap includes the best plan for her given the current state of neuroblastoma research.
I am finally on top of the bulk of what is out there in the neuroblastoma research world. Sound strange? Well, before this, I knew all of the buzzwords and I knew enough to know some good questions to ask. Now, I am starting to be able to answer the questions myself and am rarely surprised by an answer. The questions I ask today are generally much more about theory and design and less about the agents themselves. I guess you could say that I have finally saturated myself. It has become clear to me where I fit in the world of neuroblastoma.
Regardless, there were some tremendous things to come out of my visit. I finally had the opportunity to sit down and have a heart to heart with John Maris and Kate Matthay. These are two of the most well respected oncologists/investigators in the neuroblastoma world. They are the current leaders within their field and two of the minds that I am most interested in. Ultimately, they are huge players in deciding how quickly we move in research and, ultimately, where we move. In short, whether you like the direction neuroblastoma research is going or not, these are the architects of our future. For me, this was an excellent opportunity to meet with them and pick their brains. I finally got beyond the surface and understand what motivates the decisions these two make. This understanding will go a long way to bringing us all together. I am not saying that I agree with their decisions but I absolutely agree with the basic tenets that underlie each of their decisions. I think we (parents) need to understand their perspectives before we jump to conclusions. They are highly dedicated and have our best interests at hand. The trick, I think, is in the execution and I think we are making leeway to address that. (Wow, what a cryptic statement) What I mean to say is that these people are working damn hard for our children. It is the balance and the focus of who and how we treat that is the issue. I think we are coming to terms.
I can't wait to talk more.
Although my purpose is no smarter it certainly feels more educated.
5:20 AM 3/20/2007
I have now been home from Vermont for an entire day yet my mind is still reeling. I am still trying to process all of the information that is floating around in my head. I am have been able to digest it all but prioritizing it and sticking it into the right filing cabinet in my brain has been difficult. I guess part of my problem is that I am trying to prioritize drugs with tremendous promise when I know intuitively they are almost useless as single agents. It is frustrating from several different angles. It is frustrating because the trials won't accrue patients because they are useless single agents. It is frustrating because we know that in combination with other drugs we could potentially have near home runs. It is frustrating because no one can ask there child to go on a trial that is so unlikely to work and yet the longer we wait to conclude these trials the longer we wait for a cure. I am tired of looking into kids eyes and knowing there is so much on the horizon and yet not being able to give it to them. It is business. It is priorities. It is design. It isn't about our kids. It is about the kids of the future - but isn't that who we were? The happy part of me knows that this can change.
So, I haven't mentioned it but there were some great presentations at the symposium. From the perspective of a 10,000 foot view of relapse options that are actually designed with the goals of having a drug utilized before transplant it was great. Kate Matthay gave about the best overview of relapse therapies in the NANT and COG that I have ever seen. Of course, she disguised it under the title "Neuroblastoma: Targeted Pathways to Cure" but, none the less, it was just an excellent overview. As of late I am becoming a huge fan of the NANT. The trick just seems to get them moving more quickly and to get them to be more creative with their trial designs. I wish everyone was aware of the preclinical data that supports their protocols. I think if they educated people about that and developed trials with more emphasis on who they are treating now we would be 10 years ahead. I think just about everyone who saw this presentation would tell you that the NANT has some incredible things to offer. They have the strongest data and support and preclinically their data looks better than almost everything else we have seen.
Giselle Sholler did a good job of presenting her Nifurtimox data. It was good to finally see some mouse data out there in a semi public form. I think we can all say that there is clear evidence that Nifurtimox appears to be doing something in cell lines and mice. If you infer from the kids that have been on trial you might even think that there is a strong possibility that they have been able to extend this success into humans but it really is way to early to tell. There have been 9 or 10 patients but only 5 on study so far. From a phase 1 perspective, this has to be one of your best options right now but preclinically I still think NANT's data of what may or may not happen in the future was somewhat more impressive.
I am somewhat sad to say it but I think everyone felt that Shakeel Modak's presentation of Sloan's immunotherapy options left everyone wondering what more there must be. The data certainly did not appear impressive. There was little meat on the bone. I was really hoping for some more promise but was disappointed when looking at much of their data. This is not to say that I don't believe in the antibody or the work they were doing. However, when given equal footing, relapse setting or not, there was much more to be desired. If I had to rank the promise of all of the presentations I think most would have had to rank them last at this particular time and that saddens me. He did not even touch the more taboo subjects (no transplant) which to me was one of the most important. This presentation was about immunotherapy in neuroblastoma and Sloan has spent over two years not transplanting kids because the have favored immunotherapy instead. The only glimpse we got into their mentality was a relatively weak graph of some 100 or so kids that indicated that transplant may or may not provide benefit. I needed a lot more than that. This issue needs to come to a head. Families need to be aware. I don't know the answer and I don't know that there is one but there are a lot of issues that we all need to be aware of. Regardless, I was disappointed with the immunotherapy discussion. I was hoping for more and when compared to the other presentations I think it was lacking meat. I hate that especially considering the fact that I have bet my daughter's life on them.
Well, I best be off but that was a precursory glance into Vermont. I am happy to report that the kids are all doing great. I took Sydney to the dentist yesterday and I am happy to report that her teeth look great and the enamel on her adult teeth appears to be intact which is a good indicator. We know that all of the chemotherapy that she endured will effect her teeth. He just don't know how much. This was a good sign.
A full day of purpose lies ahead.
5:17 AM 3/21/2007
All of a sudden things have been shifted into fast forward. Lynley and Dr. Russell finally crossed paths and it looks as if we have a plan in place. Sydney will be getting the vaccine down in Houston. Lynley and I spoke at length last night about all of the details. We are still in the process of mulling through many but a general agreement - "Somehow, we will do the trial" - is in place. Today will be a bustle of phone calls to get all of the details ironed out. There are all kinds of minor things to plan for including some minor surgery to have a special kind of IV placed. Due to the timing of Sydney's last round of scans we are now under a timeline to get everything accomplished. If we wait too long, we will have to repeat our scans.
Over the coming days I can certainly update on all of the details but, right now, I think the most interesting thing to discuss is how Lynley and I came to this decision. It wasn't easy and, in fact, it has been decided that should Sydney have any side effects they will be my fault. I don't know that is a burden that should necessarily be put on me but if it gets Sydney the vaccine then I can live with it. To this day Lynley still does not like the vaccine. Her major problem with it is that it mucks with DNA. Her problem is not that we are doing something. It is what we are doing. We are both pretty much in agreement that something has to be done. It is just the what that has had her hung.
Lynley will be the first to tell you that she has avoided contacting Dr. Russell. She knew that once she did we would have to make a decision and move forth. She knew that we would end up doing it in the absence of any other option and she just did not want to commit our family and her daughter to these risks. Who can blame her, really? I certainly can't. I hate having to take this risk. Hell, at the very least Sydney has been in remission for 2+ years. Why can't we just let her alone and hope for the best?
It still comes down to this. If Sydney relapsed (which we still don't know) given standard therapy she will relapse again. It is how it works. I am not being dramatic. I am not overstepping my bounds. If she relapsed, she will relapse again without some type of intervention, something new, something different. The outcome of standard therapy for relapse is a known commodity. Now, if I have said it once I have said it a thousand times - so much it has made me weary but, if she did not relapse, we still have at least a 50% chance of relapsing. So given these statistics we have somewhere between a 50% and 100% chance of dying if we don't do something out of the box. We are not ready for those to be our only odds.
Here's your chance. My ears and eyes are wide open. If you disagree, lay into me. I would love to hear it. I just don't think I will. I have had this discussion with literally hundreds of people - even those that sit on IRBs and I have yet for one to tell me that they would not do the same. Well, with the exception of Dr. Kushner who gave me a stern lecture against putting Sydney in any phase 1 trial - unless it was his:) He was sure to point out that they were about dosing. Thankfully I was going to be giving a lecture on that the very next day. I got it.
And then, you have this. The simple fact that I have a healthy little girl that is happily learning in school and playing with her friends and I am getting ready to turn that life upside down again and risk it all.
The good news is that we asked her what she wanted and it turns out that she is quite excited about going to Houston. She thinks it will be okay to get a little sick again and perhaps feel like she did while she was in New York. She is also excited that she will get another "special" IV that will keep her from being poked on so many different occasions. All in all, she really can't wait. It just goes to show that - you can't let cancer ruin your day (Yes, shameless plug for Syd Birrell's book). You can make it fun and you can make it about the family. This isn't an easy road but it is much smoother when your attitude is in the right place and I have to thank Sydney for that.
Get ready, another ride on the roller coaster is coming.
5:16 AM 3/22/2007
Sydney could not be happier about her impending trip to Houston. You might even go as far as to say that she is ecstatic. She is constantly pulling me aside and asking me questions about her upcoming visit. She asks questions about the doctors and nurses and what it is like at Texas Children's. She wants to know what it looks like and which movies she will get to watch while we are in the hospital. For some reason she is really excited about watching the Sponge Bob movie because both she and Graham remember watching it while we were in New York several months back. She really wants to fly in a plane to Houston but I have explained to her that we will most likely drive. She is firing questions in rapid succession and simply can't wait for the time to come. Yes, stranger than fiction this one.
This has left Lynley and I in scramble mode. It isn't chaos yet but it certainly seems like it. Yesterday we spent a couple of hours on the phone with Sydney's various oncologists trying to come up with a plan. As it seems now we are planning to have Sydney's PICC line placed on Friday, March 30th. We will then spend the night in Fort Worth and head down to Houston on Saturday. On Sunday April 1, 2007 (day - 5) she will commence the anti-CD45 antibody. We will continue to receive the antibody over 8 hours for four days. We will then have a day of rest and then on Friday she will receive her vaccine. If all goes well we will head back to Fort Worth on Saturday. Seem simple enough? Now, I need to coordinate some fun activities so we have something to keep us occupied.
Lynley still isn't excited about this vaccine trial. She really does not like the idea of using a retrovirus to muck with DNA. Who can blame her? There have been some issues with gene therapy and they have had some scary results with similar retroviruses. We just have to hope that they have ironed out many of those issues over the years. Lynley's favorite comment to make about this vaccine is that mucking with her DNA is going to cause Sydney to grow a third arm. I have tried to assure that it would be okay because it probably would not have neuroblastoma.
Sometimes purpose is the lesser of two evils.
5:26 AM 3/23/2007
Well, here we are on the edge of another weekend and our last before we jump back into the unknown. Yesterday was a day for Lynley and I to get back to work. We had spent much of the previous two days coordinating different aspects of Sydney's care and both found ourselves buried in work. Truth be known, I really should not be writing this update to my diary. I should be doing the myriad of things that I know I have to get done at work.
Sydney has started the countdown. Everyday, as we travel both to and from school, I get the question - "How may days until we go to Houston?" I will say "8" or whatever the number is on that particular day. Then, I will have to listen to her 5 minute dissertation on days, usually to Graham. It goes something like this. "Not today. It is a school day and not the next day. But the next day will be the weekend. It is not a school day. And not the next day and not the next day and not the next day, right dad? And then the day after the next day we go to the sleepy tunnel and then we go to Houston, right dad? If you actually unscramble Sydney's logic you will find out that she is generally right on the money. In fact, I have stopped trying to decipher it and I just answer yes now. Oddly enough that is what I do with most of what Lynley tells me. There you have it. That is the secret to our happy marriage.
Regardless, I have to run. There is simply too much work piled up and I don' have the time to continue to blabber on.
Work and purpose await.
6:18 AM 3/26/2007
Wow, I had a really late start this morning. That is totally unlike me. Regardless, I am up now, well-rested and ready start a new week - a very busy and important week. On Friday we had some slight changes to our plans. Our visit to Houston has been moved up one day in order to complete the trial prior to Good Friday. Originally, we were going to get our cells (the vaccine) back on that day but they were concerned about staffing issues. There is also some concern over the PICC line that we will be putting in. First off, the reason we are putting it in is to save Sydney from daily pokes for labs and other tests. Unfortunately, the kind that is utilized at Cook's does not allow for routine lab draws. I don't know this for sure but the belief is that the one used at TXCCC (Texas Children's) can be used in this way. In all due honesty, I don't really care where we have it done as long as we get it done with one that will work for Sydney. So, to make a longer story short, we may end up leaving even earlier if the procedure has to be done there. We will just have to see what happens.
The weekend went about as well as a weekend can go. The kids had a great time, the adults had a great time and the best part is that we really did not do anything. Lynley gave me a "honey do" list and the kids supervised. In some cases they even helped. We stuck pretty close to the house and had a pretty quiet weekend at home. It was nice and relaxing. Honestly, if I had to pick my ideal weekend with the kids a normal average weekend at home with the kids has to rank right up there near the top.
Sydney is still madly counting down the days until our trip to Houston. In fact, the fact that we are now leaving a day earlier she took as a reward for good behavior. The more that this excitement lasts the more I am curious as to why she is so excited. I really haven't gotten a definitive answer but I can tell you that she is fully cognizant of what is going to transpire. Strange little duck that one but I think she is happy because of the adventure and the excitement of something new and different. Regardless, she isn't nuts. She understands. She has just learned to see the positive side. I wonder what we did right.
I guess she has purpose too.
5:17 AM 3/27/2007
I am a little apprehensive about waking the kids up this morning. Waking them up yesterday really let the wind out of my sails. Perhaps, I should explain. Sydney and Graham sleep in the same room. Each night Lynley and I take them to their rooms, read them a book, snuggle them under their covers, and give them a kiss good night. You might think that this is all that they would require. They even have a bathroom adjoining their bedrooms and a glass of water on the nightstand. This should be absolutely everything that they should need. However, almost as soon as we turn off the lights and leave their room one of them is always following us back to the room in need of something else. We then rectify the problem and send them back to their room for a peaceful nights rest. Within minutes we can hear giggles from their bedroom and the sounds of the springs from their mattresses being sprung. Yes, my kiddos are up to no good. I then have to go to the closet, get my mad daddy face, put it on, grab my angry voice from the dresser and make my way to their room. I have to be pretty gruff or this just doesn't work. Regardless, I tell them to stop playing and go to bed. If I am trying to save a trip back to their room I always have to threaten to take their blankets away or to turn off the night light. Yep, I am not laying games here.
This is the tradition in our house and these are the nightly rituals that we must endure every night before the kids actually fall to sleep. It is the way things are. The kids simply aren't ready to go to bed until they have lost their blankets and had a good stern talking to. Well, the night before last was quite different. After we put the kiddos to bed we heard nary a peep. Our children listened. Just as we had asked, the kiddos went right to sleep. No scolding and no mad face. Boy, were we proud. We had finally mastered parenting. Sure there weren't going to be any trophies, nary even a certificate of completion but at least Lynley and I knew that we had finally achieved nighttime peace. Move over Mr. and Mrs. Incredible we were the Super Parents.
Lynley and I both slept peacefully that night. The kids did as well. In fact, it was well after their normal wake time that we heard them giggling from behind closed doors. I was downstairs working and Lynley decided that it would be an appropriate time to go in and get them ready for school. When Lynley entered their room she found them gone and their beds stripped but she could still hear their giggles from the adjoining bathroom. Upon entry Lynley discovered that Graham and Sydney had taken up residence in the bath tub. At some point during the night they got the bright idea that it would be fun to sleep in the bathtub. And that they did. Yes, my children, the same ones I clearly thought I had mastered the night before, had snuck out of their rooms and slept (quite comfortably I might add) in the bathtub.
Is their really anything more to say? I think not.
Apparently purpose is not as easy to master as I had thought.
5:44 AM 3/28/2007
I have not slept for about the third night in a row so I am a bit crabby to say the least. The good news is that no one knows this but me. I wonder if the reason I am having so much difficulty sleeping is the upcoming trial in Houston. I have to admit that I am a bit nervous about it and I don't know why. Well, I guess I know why. It is an unknown and the risks hardly seem quantifiable. It must get really tedious reading this day in and day out and having to listen to me moan and complain about some highly unlikely unknown risk related to a vaccine. Even I have grown tired of it - literally. It just is not as easy as I thought to commit myself to this trial. I think perhaps the biggest problem is that Sydney seems so well that I just have a difficult time putting such a seemingly healthy kid at risk. Additionally, subjecting her to this phase 1 trial is also admitting a reality that I think none of us want to face - the reality that my daughter has had neuroblastoma. It is so easy to fade back into to life. I value where we have been. Sydney's journey has forever altered me and my family for the better but I am still in fear. This trial brings that to the surface. It is one thing to know you have fear. It is another thing to say it. But it is far different to face it. This trial is putting us in the face of fear. We are acting upon our reality and we are living in it. It is different.
Taking charge of my purpose usually alleviates my fear, interesting.
6:12 AM 3/29/2007
And so begins two weeks of a another new world. Today Sydney will start her day at school only to be followed by a trip to Cook's after lunch for the placement of her PICC line. I am expecting this to be a medical non event but for Sydney a mental challenge. She is not a fan of getting IV's placed and I can only imagine that this will include a little more work and drama. This line will remain in place for the next two weeks as we go through treatment and the mountains of lab work. That is ultimately the highlight of the day. The remainder will be spent packing and playing with the kids. Tomorrow morning we will leave for Houston.
I wish I could say that I slept last night. Unfortunately the only thing a know for sure is that I rolled over 1,263 times. I have never woken up so tired. I am happy, however, to say that my lack of sleep was interspersed with thoughts of some upcoming exciting events with Lunch for Life. It was a nice intermission to the medical worries that have been fluttering through my head. My mind just won't stop racing. At some point I am going to crash because I simply don't know how long I can operate in this state. Why can't I sleep?
My mind must be full of purpose.
5:40 AM 4/1/2007
I guess I have a little updating to do. In fact, my mind has to travel all the way back to Thursday which seems like an eternity ago. Sydney's PICC line insertion was problematic. We had no luck in the left arm. After several tries we finally gave up, never getting it more than a few inches into her arm. The insertion into the second arm went far more smoothly. Within seconds the line had been inserted, moved up her arm, through her chest and hopefully into a nice restful spot in her subclavian. After the insertion we took her upstairs for a quick x-ray. Unfortunately the x-ray showed that the line had looped. The belief is that somehow the line found its way into a collateral vein. What is that, you may ask? Well, think of collateral as "extra" veins that developed in search for blood. The "why are they there" is a better question. I have been told by official medical brainy types that it could be related to previous chemotherapy but I find that hard to less likely. In my opinion (not medical or based in reality), it was probably due to thrombosis (a blockage or narrowing of some sort) due to one of the aphaeresis catheters or central lines. You see, for some reason Sydney's veins were looking for more blood flow and they found it by creating collateral (think of them as parallel) veins. It is tough to know what actually happened but it is safe to assume that somehow Sydney's body started to develop these collateral veins in an effort to get more blood flow and it seems to be a plausible side effect.
Regardless, after much deliberating with ICU doctors and the like it was finally decided that there was too much risk to leave it where it was and they decided to pull it out a bit. The good news was that this would save Sydney an immediate poke. The bad news was this left Sydney with a "long" IV instead of a PICC line. A long IV is highly unlikely to get blood return and will probably be useless for labs (the major reason we had it placed). So there you have it. Over a 4 and a half hour period, 3 procedures, and 2 x-rays we finally had an IV.
The next day we left Ainsley in the capable hands of DeeDee and made our way to Houston with Sydney and Graham. It was a rather uneventful day but we were happy to find out that they ended up having a room for us at the Ronald McDonald House. The Houston house is large and open. It is quiet a different feeling than the New York Ronald that we had stayed in. Most importantly we have found the people to be similarly nice and once again we found ourselves thankful that there was such a place.
We arrived at Texas Children's at about 8:00 AM on Saturday morning. We found ourselves on the 8th floor of the West Tower in the Bone Marrow Unit. Here we met Dr. Doug Myers the primary investigator of the vaccine trial. He appears to be about our age and seems far more like a friend than our daughter's oncologist. That is not to say that he is not an excellent oncologist. His demeanor was just clearly that of a team player and I like that. After some paper work and some shuffling of rooms we finally landed a bed at close to 9:30AM.
We did not start the anti-CD45 antibody until about noon. The morning slipped away as we battled a problematic IV and several attempts at getting blood for labs. Finally, however, we began.
5:44 AM 4/2/2007
The first day of any new cancer treatment is always a little bit scar,y especially when only 1 or 2 have tread before you. I think it is the fear of the unknown. However, after having so many "firsts" with Sydney I think we have come to expect the worst. It is just what we do, especially with any type of antibody therapy. Yesterday through us for a loop however and I guess, had I thought about it before hand I would have prepared myself a little more thoroughly. You see, the anti-CD45 antibody is dose escalated. This means that they start off with a really small dose and then slowly give more and more until the medicine has been delivered or until a toxicity is experienced. This is also the reason it may take 5 hours or (in our case) 12 hours to get the entire drug into her system. This is great if you don't experience a side effect but otherwise you kind of spend the day building towards it. Sydney spent the morning about as comfortable as one can be while hooked up to a pump. She and Graham spent hours together in her bed watching movies and coloring on random scraps of paper. By all accounts this was a breeze. The first signs of any side effects came at 4 mg/hr. She began to complain that her throat was hurting and we elected to just sit back and watch. We had guessed that this was due to the fact that she was due for some more benadryl (Vistaril in Sydney's case.) Dr. Myers decided to dose her a bit early with the Vistaril just in case.
The next dose level was when the chaos ensued. Within minutes of going to 5 mg per hour Sydney started complaining of severe headaches. Before she could describe it she was writhing in pain and vomiting all over the place. Dr. Myers stopped the infusion at once and Sydney recovered quickly. She was clearly out of any danger in seconds and had regained her composure. We elected to give her a one hour break before resuming the infusion. The rest of the day and night she received the anti-CD45 antibody at 3mg per hour without incident but it made for a much longer infusion than originally planned.
Overall it was an awful experience to see your child in that much pain. The good news was that it was really short-lived. From what I gather this is a side effect that they had seen in adults but not in children. Furthermore, I think everyone was a bit shocked to see it at such a modest dosing level. The reason I think for the intensity of Sydney's pain is actually a sign of her healthiness. The doctors believe that the head ache comes from a chain reaction that is started when so many cells are lysed (death of a cell by bursting) at once. Sydney had a relatively healthy immune system when entering this trial and she was likely to have a larger count of lymphocytes to be lysed. In this sense she would be more likely to feel these effects because of the general state of her body. Following this line of thinking and some experience in other patients, the belief is that these side effects will diminish greatly during the next infusions because there will be less white cells to kill and thus less inflammatory mediator release.
The next day went smoothly although we were all a little bit apprehensive. No one felt that a repeat of the previous days events were needed and therefore we acted quickly at the first sign of any discomfort. In fact we stopped the infusion at the first sign of even a throat tickle and rode out the rest of the day at a rate of 3mg per hour. Because of this we had a very smooth day. You never would have known we were in a phase I cancer trial.
We are now halfway through the preparatory regimen for receiving our vaccine and all is well but the fact that we are in the bone marrow unit reminds us of the fine line that we walk.
6:16 AM 4/3/2007
From everyone's standpoint, yesterday really was a great day for Sydney. Sydney's tolerance of the CD-45 has been a bit different than many of the other kids that have had it. Not many others have reacted to it at such low levels or as violently. Thankfully all of our problems were short-lived. Most kids breeze right through it and their side effects are minor in comparison. Regardless 3 days into the infusion no one seems to have any side effects and Sydney was a poster child in that sense. We were able to dose escalate Sydney right up to the max and she slept right through it. Today will be her last day of the anti-CD45 antibody and then she will take a day of rest before we give her the vaccine on Thursday.
We aren't really anticipating any side effects but I can tell you that we all woke up with the sniffles this morning which has me a bit concerned. Believe it or not Sydney is already immunosuppressed and has little white count to fight off an infection. I am hoping we are just adjusting to the dry air here in the bone marrow unit but only time will tell. I will let you know if I hear anything.
As a funny side note, I have had the opportunity to take Graham on several adventures up and down the Metrorail and throughout the catacombs that make up this system of hospitals. He and I have had a blast. Sometimes Graham is so excited he forgets to listen. Yesterday, as we were crossing the crosswalk in the breezeway of Texas Children's, Graham decided he wasn't going to hold my hand while crossing the street. I told him the policeman (security guard) directing traffic would get mad at us if we did not hold hands because it was the law. The security guard smiled at him and Graham grabbed my hand as fast and as hard as he could. He then lifted our hands to show the security guard what a great job we were doing. To say that Graham is a little sensitive about crossing the street now is an understatement. He will stand by the curb indefinitely until he has a hand to hold and every time we pass the security guard he is sure to show him what a good boy he is at holding hands. The security guard always winks and laughs a bit.
Remember, whether everything else is known or not it is the simple pleasures that define your purpose.
6:02 AM 4/5/2007
The last 2 days, other than being extremely hectic, have been pretty good. Sydney tolerated her last day (her fourth day) of the anti-CD45 antibody beautifully. There have been some minor concerns but nothing that points to anything ominous. Tuesday she literally slept through her infusion which was great. To truly compare this experience with that of the first day is impossible. We saw absolutely no signs that she was receiving anything at all. It was as if she was receiving IV saline. The only questionable moments came on the EKG. Sydney was experiencing some irregularity with her heartbeats - so much so that the monitors kept flashing "Irregular" in red print. This, of course, caught Lynley and I by surprise so we brought it to everyone else's attention. After some review it was concluded that her beats were "regularly irregular. " In other words, her heartbeats were irregular but in the same way that all of our heartbeats are irregular and it is believed that it was probably more a result of the Benadryl and other drugs than any indication of something severe. It went away with time and we are just hoping that we don't continue to see those blips in the future.
This morning Sydney will be receiving her vaccine. In this sense receiving her vaccine is more like a transplant of cells. Over the last 4 or 5 days we have killed as many of her lymphocytes as we could. Now, we will be going to the research center this morning to have her genetically modified t-cells infused back into her. The risks today are fairly minimal but nevertheless present. Similar to a stem cell transplant her cells have been kept in DMSO so there is always the risk that she could have an allergic reaction to that. That is perhaps our biggest risk today and I can also guarantee that this will probably be a pretty smelly adventure (The DMSO has a strong lingering aroma). Other risks come from the body reacting to her genetically altered lymphocytes but we are not really expecting to see much of that in these volumes. None the less, they will be monitoring her respiration to ensure everything goes well. Apparently one of the first places that the lymphocytes can cause problems is in the lungs. The other short term risks are almost too trivial in comparison so I shall spare you those.
The infusion ought to occur at about 10:00 AM. After that they will watch us for about 3 hours and then, assuming all goes well, we will make our way home to Fort Worth this afternoon and evening.
There have been many good stories this trip and I am struggling to remember them all. Unfortunately, the kiddos have kept us up late and got us up early so there truly has been little time to write. I hope to get a chance to write on my way home and share some of our funny stories. I will do my best to update later today. With hope and prayers.
Today is a serious day of purpose.
6:50 AM 4/6/2007
Sydney safely received her vaccine and we raced home to Fort Worth where the Dungan Five have finally reunited. There will be much more to write later but for now it is time to be with my purpii.
5:59 AM 4/9/2007
I hope everyone had a Happy Easter. We sure did and there is nothing quite like sharing it with a 5 year old, a 3 year old, and a almost 2 year old. I can tell you one thing for sure. My kiddos do not need any more sugar.
Thankfully Sydney has continued to do well. We have not seen any side effects from her treatment last week. and we are right in that period that we would expect to see something. To be honest, with her lack of measurable disease we really aren't expecting to see too much. However, I still think it would be nice if we could get a sign that it was working. A nice rash across her forehead that says "NO NB" would be nice.
I haven't really shared our experiences from that final day of treatment and I imagine there are probably others out there who are trying to make this decision for themselves. It was anticlimactic end to say the least but I guess an overview still might be helpful. We arrived at the GCRC at about 8:00 AM. I have no idea what GCRC stands for but it is the research clinic at Texas Children's. From outward appearances it looks like any other hospital floor at Texas Children's but it is used specifically to treat children that are participating in their research trials. After a quick height and weight we were ushered to our room on the southeast corner of the building.
There was no rush but within the first hour Sydney was tapped for another ounce of blood. This blood was used for research purposes but also to ensure that all of the anti-CD45 antibody had left her system. We then sat back for several hours and watched the complete first season of Scooby Doo. At about 11:00 the finally started pre-medicating her with Tylenol and Benadryl in anticipation that the labs would finally come back clean and we could get started. Once the labs came back, everything moved into overdrive. Sydney's T-Cells had been unfrozen on another floor and the doctors would run the large syringes of what looked like about 10 cc of semi-clear liquid down the stairs to us as fast as they could. There would be two of them in all. The injections happened immediately upon arrival and although they watched for side effects Sydney simply slept away. There were two concerns. First , they were hoping that she would not react to the DMSO which she did not and secondly they were looking for respiratory problems as the cells made there way through the lungs. She did beautifully and there was not even a blip on the monitors.
Sydney and Graham continued to sleep the rest of the afternoon away. At about 3 hours post infusion they drew some more blood, removed her IV and PICC line, and sent us on our way. By 3:00 PM we were on the highway motoring back towards Fort Worth. About the only difference in Sydney from the start of that day to the end of the day was the fact that she now reeked of creamed corn from the infusion of the DMSO. Thankfully the smell dissipated much more quickly than it did after transplant and within a day or two she had left the smell behind. All in all, it could not have gone any better.
My purpii are safe at home after one more trip to the wishing well.
5:49 AM 4/11/2007
Good Morning! Well, my lack of update has been more an issue of me than anyone else. Upon our return from Houston my health has continued to deteriorate, finally culminating in what has been a few sleepless nights with high fever, chills, sore throat and the usual complementary set of aches and pains. It got so bad that I actually went to stay at my mother's house to keep from exposing the rest of the family,but especially Sydney, to the sickness and my misery. I know, it sounds like an excuse for not writing in my diary but at least there was some reasoning behind it.
Sydney continues to do well. She has not shown any side effects from her treatment last week. Although her color is off a bit I think that is more an effect of being chained to a hospital bed for a week. She is back in school and happy to be with her teachers and friends. With the exception of me everyone has slid nicely back into the routine of life.
I did forget to mention one story from last week that is worth saving in the Dungan Annals. While in Houston caring for Sydney, I would occasionally get the chance to change hats to spend quality time with Graham. These excursions were never longer than an hour but it was a chance for he and I to get out and grunt like men. Sometimes we rode the Metrorail. Sometimes we rode the elevators up and down the tallest buildings we could find. Sometimes we just went on excursions through the matrix of catacombs that exists underneath the hospital connected to Texas Children's. All in all we had a pretty good time but our journeys also usually included some time of errand. These errands were usually about finding food. On one such occasion that required a little less imagination we made our way over to the McDonald's. It is physically in Texas Children's but hidden behind a maze of hallways. Down the elevators, out the door, across the breezeway, in the other door, past the trains, through the hidden door on the right and then down the long corridor. Somehow we found it every time.
On this occasion Graham and I had just ridden back and forth on the Metrorail and we were getting some lunch for Sydney and Lynley. I guess we must have been a bit early because there was only a few people in line. Next to us was one of the physicians from the hospital. She seemed nice enough and even looked over in our direction and acknowledged our presence. I then made it to the front of our line and began ordering. I was concentrating real hard because, as always, there was a series of changes to our orders that needed to be addressed or I would forever exist in the doghouse. Graham kept tugging on my pant leg and I finally turned to hear him say that he needed to go potty. He was doing that cute little dance that kids do and the physician at the register beside us gave him another smile. I told him "Let me finish ordering and we will go to the bathroom. Can you hold it?" He nodded his head and I went back to ordering. The next thing I knew the physician next to me started cracking up. Soon, everyone around us was having a chuckle. I was too busy getting my order right to see what was going on. But, I finally finished ordering and turned around to find my son literally holding his crotch. He listened to me literally. He was politely waiting until I finished ordering and was holding "it" just like I asked. By this point just about everyone in the store was laughing. I must admit. It could not have been funnier. I paid the lady at the register, patted Graham on the head, and we made our way to the potty.
I just love my purpii, God they are great!
5:49 AM 4/12/2007
Well, I am happy to say that I appear to be well on the road to recovery. The timing could not be any better as tomorrow we are due back in Houston. With me back in the land of the living it looks like Sydney and I will be getting up early tomorrow morning to drive down to Houston. There we will have a check up and have a lab draw. After that we will be back on the road. The idea is to make the trip to Houston and back in one day. It seems kind of silly but I am sure that they would not want us to go all the way back to Houston if it was not important.
The other exciting thing that is coming up is a Lunch for Life event next week. We have about 7 families participating in DFW. Next Wednesday each of the Purple Cow diners they will be donating 15% of their sales to Lunch for Life. The different families are having a competition to see how many people we can get to show up at our locations between 3:00 PM and 9:00 PM on Wednesday, April 18th, 2007. Sydney's store will be the Purple Cow at the corner of Hulen and I-30.
Lynley and I started Lunch for Life (http://www.LunchForLife.org), a parent and family driven fundraiser, which was established to fund neuroblastoma research and to help families navigate their treatment options. We are convinced that these efforts will help Sydney fight this disease, and hopefully, beat it but we know it will benefit the thousands of other kids that follow in her footsteps. We would love for you to join us in this fight... and have a bit of a "breather" from kitchen duty!
When: Wednesday, April 18th (3:00PM-9:00PM)
Where: The Purple Cow at Hulen and I-30 (Plano and Dallas locations too)
What: The Purple Cow will donate 15% of all food sales (shakes too) to Lunch for Life.
Who: Everyone - please spread the word - this is a challenge event, if you have friends in Fort Worth, Dallas, or Plano, tell them to go to their local Purple Cow and eat dinner. They don't have to donate a thing. Simply by showing up and eating a meal they help us - We are hoping for a huge turnout at Hulen and I-30 - as this is Sydney's home restaurant. All our NB friends will be part of the fun and there will be families at each of the locations
Please join us and help save a life! Please pass along to all of your organizations - we all love Purple Cow and here is a great excuse to treat the kids for a great cause!
With the trip to Houston, I don't know if I will get a chance to write in the diary tomorrow morning. If not hug your purpii and have a great weekend.
We will have a weekend full of our purpose.
5:11 AM 4/16/2007
Good Morning! We are back from our whirlwind trip to Houston. I don't know that you can ever call a 5 hour drive followed by a needle poke, a lab draw, and a 5 hour drive back home a lot of fun but Sydney and I had a pretty good time. The trip was uneventful. At about 4:30 AM Friday morning I piled Sydney into the car and we began our journey. Within ten minutes she needed to go to the bathroom and was ready for a potty break. What is it with Dungan women? I think I could write the sequel to "The bridges of Madison County" entitled "The Public Restrooms of the I-45 Corridor" Regardless, once I got her relieved and back into the car it wasn't long before the darkness and the hum of the road lulled her back to sleep. She would sleep until about 7:30 AM.
This trip literally was about a lab draw and a checkup. After searching for parking for nearly 45 minutes we dawned the doors at about 9:30 AM. Within minutes Dr. Myers was in our room asking questions and giving Sydney a thorough once over. There was nothing really to be seen but he prepared us for what to look for. We are now in that time period where we would expect to see something if we were going to see anything at all. Basically, we are looking for swelling. If we saw it, it would theoretically mean that the vaccine found some disease and was killing it. Although it would be great to know that the vaccine works we just assume not see anything at all. Remember, if we see it, it means she has disease. In short, we are just hoping for a nice quiet week without any swelling or strangosity.
Thankfully, the trip home was as uneventful as the trip down. Sydney quietly watched movies in the back seat as I drove away. Eventually we turned up the radio and both sang along. We made it home at around 3:30 PM in the afternoon. It had been a full day.
Our weekend was rather quiet at home. Well, I say quiet but you must know that nothing is ever really quiet at my home. It was a cold weekend and we were cooped up in the house much of the time. Yesterday was my birthday. I guess the entire family had gotten together and decided that I was fat, sloppy, and lazy because I was presented with a new bicycle, a grill, new pants (for fat boys), and a new drill. I guess I should be taking some hints.
Well, I am off. There is a ton to plan this week with all of the Lunch for Life events and it even looks like we may be able to get some families together to deliver lunch to the COG meeting this week. It is going to be a great opportunity to bring some much needed press to the Conquer Childhood Cancer Act of 2007 which is a very important piece of legislation for our children.
There is plenty of purpose to go around this week.
6:14 AM 4/17/2007
Well, it may look like I am a bit late this morning but I really am not. I have been working all morning on some press releases for the upcoming Lunch for Life events. To be honest, it has been a nightmare but, the good news is that I pretty much expected it from the very beginning. The problem is that there are a bunch of groups in the pot. Of course, we have Lunch for Life and the CNCF involved but to get access to the COG at the spring meeting here in Dallas it also became necessary to involve CureSearch. As many of you know I, like many families of children with cancer, have not historically cared for CureSearch. Over the last few years they have been plagued by some serious lapses in judgment and a reputation of unfair dealings. Furthermore, they have not supported neuroblastoma research to our liking. Regardless, less than 3 months ago there was a shakedown and most of its leadership were removed. A new team was brought in and I am hopeful that they will make up were the other regimes have failed.
With a sense of renewal and knowing that it will take collaboration for childhood cancer to get the attention it deserves I along with another father of a child with neuroblastoma carefully approached them for their support and participation. Although there have been mountains of hurdles we are making progress and for the first time I truly believe that we are collaborating in a positive way. We are breaking new ground and establishing a level of trust between organizations that has never been there previously and in this sense I could not be happier. None the less, planning for the event and its press and dividing the responsibilities has been a challenge, after all, this is the first time that it has been done between these two organizations. I am happy to say that we are making progress. I am just hopeful that we can complete the circle of understanding before it is too late.
The current plan is two-fold. First we are going to use the Lunch for Life events not only to raise funds but to also create awareness about the Conquer Childhood Cancer Act. Secondly, we are going to follow all of this with a field trip to the COG meeting to deliver food to the investigators and researchers that are working so diligently to scrape together funds to continue their research. So, if you are a neuroblastoma family, whether you participate in Lunch for Life or not, we would love to have you join our families and the others of Lunch for Life to have our kids deliver lunch to the COG meeting to bring attention to the Act, the need for research, and to reward the researchers for working so hard on our behalf. I would really appreciate it. Currently the plan is to go to the COG meeting in Dallas at about 10:00 AM on Friday. We are planning on this being a media event so please keep in mind that you or your child may be interviewed. You can contact me at email@example.com or via cell phone at 817-846-6085. The more families and children we have the better. Simply put, we a have an opportunity to bring childhood cancer to the forefront of the news this week and I would really love your participation. This event probably won't cure cancer but it could get us there a lot more quickly.
This is purpose in action.
5:30 AM 4/18/2007
Well, everything is finally put together and agreed upon for the Lunch for Life events this week. Today is one of our bigger events. This is the day that all of the Purple Cow restaurants in Fort Worth, Dallas, and Plano will be sponsoring Lunch for Life. Basically, as long as you come between 3:00 PM and 9:00 PM and let them know you are there for lunch for life they will donate a portion of your check to the CNCF. The other thing that we will be doing at these events is raising awareness about the Conquer Childhood Cancer Act. Pete Sessions, our Congressman from Texas, was nice enough to write a letter of support for the Act and is circulating a petition. This petition will also be available to sign at each of the locations. Just so you know, this is the second year that this Act has been presented. Last year it got stalled in committee so it is even more important that we work to push it through this year. I cordially and personally invite everyone in the whole wild world to our events this evening.
On another note, life around the Dungan house has been pretty much normal. There is nothing really out of the ordinary here. Let's see, last night all of the kids were taking a bath together and Ainsley decided to take a crap right in the middle of the shower. For some reason, the thought of bathing next to human poo did not phase any of the rug rats and it wasn't until we asked them to get out of the shower that they decided to let Lynley and I in on that little discovery. Could you please tell me what goes through my kids heads. I would really like to know. Any way, Lynley lost the coin toss and it was her that got to clean it up. My evening was perfectly content. See, like I said, just another day at the Dungan household.
Purpose and poo, what a great combination!
6:00 AM 4/19/2007
The Purple Cow events were a huge success. I would like to tell you that the Fort Worth restaurants obliterated the Dallas and Plano stores in overall sales and participation but unfortunately it would be a lie. It looks like the Dallas store came out way ahead which I have a tough time believing. From just about 3 hours we had every table in the place full and a line out the door. We had people in the door earlier than the other stores and we finished at about the same time. So how did they beat us. My guess is that we Fort Worthians, being ever so health conscious, just did not eat fast enough. Furthermore, we are a pretty social bunch and I imagine we were just having too much fun and we let our eye get off the prize while the Dallas and Plano stores raced by us. I suppose this is all okay. I just hate to break it to the families at the Dallas and Plano that we actually won. You see I said the winner was who raised the most. I just didn't mention what "the most" was. It was actually "fun" and we clearly had the most of it. It is clear, all of our patrons wanted to stay longer and party harder.
This really was a great event. The kiddos had an absolute blast. It was pure chaos but every child seemed to have a smile on his or her face. Sydney and Graham were crazed out of their minds on the sugary rush. Ainsley mingled with the crowd looking for another family that she thought might be more appreciative of her twerpish charm. There were few people whose arms I did not see her in. Sydney has always been the focus of events like this but Ainsley sure has begun to make an effort to steal the show. She is defining for others where the center of attention truly should be.
Ultimately, it is this type of good natured family fun that is what all of this is all about. There wasn't anybody that I saw that wasn't having a good time. It really seemed more like a fun-raiser than a fundraiser and I am hopeful that we can find more ways to have these events in the future. The say it takes a village to raise a child and it is experiences like this that remind us how supported and cared for our family and children truly are.
Our village has a purpose.
5:34 AM 4/20/2007
Good morning! Today is the finale to a busy week of Lunch for Life activities. This morning Sydney and a few other children with neuroblastoma will be delivering Purple Cow milkshakes to the neuroblastoma committee at the Children's Oncology Group Spring meeting. I am hoping she will take great pride in wheeling her little red wagon full of purple shakes into the meeting this morning. However, that is also the problem with five year olds and especially mine. I am not sure whether she will happily roll them into the room and gladly hand them out or try to hide underneath the wagon itself. We are hoping that ABC will be there to capture the action but all of the press coverage that has been committed to the Virginia Tech shootings really hurts our chances of getting any airtime. I am also hopeful that the papers may find some space to capture the story but only time will tell. We simply never know what is going to happen with the news. Sometimes we get lucky and sometimes we don't.
Yesterday, Sydney had an oncology clinic appointment. The purpose of this appointment was two fold. First, Dr. Eames was looking at her closely to ensure that she was not sprouting a third arm from the genetically altered vaccine and to make sure that she was in proper working order. We are approaching the end of the period in which we would hope to see any effects from the vaccine. Believe it or not, that is a good thing. An outward sign of activity would probably mean that she had neuroblastoma, so I would just prefer to have a nice anticlimactic fizzle to this vaccine. However, just because we have not seen anything does not mean that it is not having an effect. Like any other vaccine you usually never know that it is there as it does its job and that is exactly what we are looking for.
It took quite a long time for us to learn how to get blood out of Sydney. It has been a year since she had her port taken out and ever lab since has been a challenge - until we went to Texas Children's. We have known for quite some time - forever actually - that Sydney had piddly little spidery veins that bent and looped all over her upper body. This is one of the reasons that I had always been against removing her port. I understand that her life would have been very different over the last year and I often wonder what would have been better. When she is happily playing at school without a care in the world and we don't have to be concerned with keeping it protected or flushed it seems awesome not to have it. When we are at the hospital and they are poking her for the second or third time because they blew another vein I am less sure of our decision. Regardless, we have never really tried to milk her foot because we knew that they were typically more painful. However, Sydney has huge juicy veins in the area so we finally gave it a shot. A little freeze spray and a quick poke and she was done. It was that easy. So, if you have blown every vein in your child's body or if she seems particularly difficult to hit in the upper body you might want to consider getting labs in the foot. Sydney prefers this method to any other and lord knows she has had the experience.
Well, I best be off. It is time to get ready for our ice cream party at the COG. Keep your fingers crossed for a fun time for the kids and some press for us all.
All it takes is a little hope and purpose.
5:29 AM 4/23/2007
Friday was a great day. The way it started off you might have thought that it was not going to go nearly as well. We made the decision early on that Lynley and I were not capable of playing a zone defense. So, 3 kiddos were out of the question. With so much still up in the air I really had no idea of what I would be required to do. At the very least, I knew I would be thanking a lot of adults and talking to a lot of oncologists. For this reason, we decided that Graham would probably be happier at school and we, Lynley and I, would have a better illusion of control. First thing in the morning we fed and dressed the kiddos and I hopped into the car to take Graham to school. My suburban was dead, dead as a doornail. I had been so busy the day before when I got home that I forgot and left my keys in the ignition in my car. Worse yet, I had left the electric on. That was a first for me but probably a good indication that it had been a very busy couple of weeks that had culminated to this point. Regardless, I plopped Graham into the seat and jumped my suburban. Within minutes, I was going with gas. I then raced Graham to school, raced back, and got the rest of the family on the road.
We arrived at the Adams Mark in Dallas at about 9:30 AM. There we met several other families. The stars of the hour were Alex Podeszwa, Alexa Aigner, and Sydney. They were surrounded by their siblings. There were several adults as well. It was David and Ann Podeszwa, Crys and Zack Aigner, Linda Kee (Chris Bridgwater's mom), and Lynley and I. From all appearances it looked as though we were evenly matched but from the moment we all met it was clear that the kiddos were in charge.
I will tell you - kids are great. They have a way of shaking up the world that really puts things into perspective. I liken their effect to that of a snow globe with too much snow in it. We as adults look at that snow globe and see it for exactly what it is. To us, it is just a glass ball with too much sand in it. In fact, we are so busy we would probably just pass by it. A child, on the other hand, would come up to it and grab that globe and shake the living daylights out of it. What they would find is the wonderland that was hiding underneath all of the snow that was hiding it. They make such great discoveries that we have either forgotten to make or forgotten to appreciate but that we rarely take the time to see. In this sense, this is exactly what I had experienced. Here we had 4 families that represented 4 kids with relapsed or refractory disease. By all means you would have to think that these kids and families all must me somber, pale, and quiet. But no, quite the opposite. These kiddos were the life of the party and from the moment they dawned the door they changed the entire mood of the conference center. All of a sudden it was about play and laughter and kids being much too loud for the serious meetings that were discussing their future. It was a nice reminder about what and who these children really were - normal happy kiddos. All of this work, was about these children.
I have a link to a video of the event which I will share below but the experience was great. The kids did a great job bringing in a little red wagon filled with cold milkshakes for the investigators and researchers. Everyone was so thankful for their efforts and it was clear that it was exactly the thing that was needed. We mingled and talked to many of the oncologists. I spent time talking to Dr. John Maris, Dr. Kate Matthay, Dr. Judy Villablanca, Dr. Bob Seeger, Dr. Claire Twist, and, of course, Dr. Patrick Reynolds. I was proud to see that even one of Sydney's oncologists, Dr. Granger, was there. The ten minutes that I spent in that room read like a who's who of neuroblastoma research and I was so thankful that they were there working so hard together for my daughter and all of the other children with neuroblastoma. One of the most meaningful moments came when Ainsley and Sydney scooted a chair up to one of the tables to drink their milkshakes. On the other side of the table was a statistician. I am guessing that she rarely saw an actual child with neuroblastoma, if ever, and I think the opportunity to share a purple shake with one whom all of her work mattered had to be invaluable. So many of these researchers have never met a child with neuroblastoma but here, at this meeting, many did.
All in all, the morning delivery of milkshakes to the neuroblastoma committee at the COG meeting was a huge success. We even made the news. It really was a great day for childhood cancer. Here is a link to the video:
This is what purpose is all about.
4:55 AM 4/24/2007
With all of the excitement that I had to cover from last week I never really got to share a story about the kiddos going to bed. As I get older it is becoming more and more clear that kids exist on a different plane than we do. Furthermore, I have found than much of what I see is not what it appears. Although my kiddos often do things that appear to operate on the fringes of sheer stupidity, I have found that their intent is usually something beautiful - even almost something sacred. I still learn to bite my tongue every day because it does not matter how ridiculous something seems I have learned there is something much more behind it. In other words, instead of screaming at them for trying to flush the cat down the toilet I fight to stay calm and ask the question "why?" because I have learned that the answer (if you can get a straight one) is always better than anything than I could think up and usually far more benign.
I tell you this because it is a fight and a source of incredible parental guilt. For me, life is hustle and bustle and I routinely seem to get caught up in it. With five thousand things flying at you at once it is tough just to notice the things that are going on around you, much less to reason why. I work to support my family and because I hate this disease but sometimes I forget that the reason that I do it all is just so that I can be with my family - so that I can provide them with a good life. If I don't pay attention to what is important I ended up cheating everyone but especially those that mean the most. So, there you have it. The moral of the story before the story. Now, here we go.
The other night we put the kids to bed in normal fashion. For the most part, the kids go to bed pretty quickly but on some nights there must be torture and firm commitments towards punishing them. For some reason, my kids are not perfect and they only seem to listen part of the time. It is these other times where we must face the arduous task of putting them in timeout, taking away there toys, etc. However, I still maintain that they usually go to bed pretty quickly after we put them to bed. The other night was different, however. I think they must have had sugar before bedtime or smuggled candy into their room because they were literally climbing the walls. I had been into their room several times to calm them down and I had used up all of the tricks in my sleeves. I did my best to calm them down because the only thing that was left to do was to beat them into submission and we are more of the positive parenting type of people. Once I had calmed them down a bit I figured I had them in a place where although they were not going to go right to sleep they were at least calm and subdued.
I closed there door and made my way back to my bedroom. It was not long before I had fallen to sleep. At about 10:30 PM some noise woke me up. I looked down the hall and saw the light coming from underneath their door. This was a huge no - no and, worse yet, the kiddos were clearly awake two and a half hours past their bedtime. I shot out of bed and down the hall. I whipped open the door. I found their beds made, their room cleaned (literally, the smell of endust was ripe in their room) and both were out of their jammies and fully clothed in weekend play clothes. I rubbed my eyes to regain focus but what I saw was indeed reality. I was still foggy and half asleep and mad that they were awake this long after their bedtime. I did not even allow it to register. I told them in no uncertain terms to get their jamies on and to get their little hineys in bed. Within seconds, I had them back in their jammies and back in bed. All the while I had been telling them how bad they were because they stayed up to late and got out of bed. In my defense I still wasn't totally awake and I still had not registered the event. Regardless, as I quipped "good night" to them once again, flipped off the light, and made my way out the door; I heard Sydney. She said, "Well, you did not even see what we did downstairs!" Well, at that moment, my heart sank. I was beginning to register these events and I knew this would turn out to be one of those things that I regretted yelling at them about. I sluggishly made my way downstairs, half not wanting to find anything. When I dawned the kitchen door I saw it.
They had decked the breakfast room out. They had prepared a four course breakfast. They had put out the placemats and utensils. There where plates and napkins. Everyone had orange juice and depending on the setting everyone also had there favorite drink. Graham had grape juice, Lynley had water, Sydney had strawberry banana. Ainsley had some milk. I had a beer (Shiner Bock) but that is an entirely different story. Needless to say, I don't drink at breakfast but I thought the gesture was nice. The kids had also done a fine job at preparing the meal. We had fruit and bowls of cereal. Sydney had even poured the milk into the bowls. In short, the kids had made breakfast for us because they knew how hard we had been working and they wanted to help. No, I am not making this out to be better than it was. That was the reality. Our kids were just trying to be nice and I had just spent the last five minutes yelling at the about going to bed. It was a good reminder that we need to take a moment to digest what is going on around us before opening our big mouths. I could have handled that so much better and to this moment I still feel pangs of guilt. This is just a subtle reminder.
Don't forget your purpose.
5:25 AM 4/25/22007
I am somewhat happy to report that breakfast was not waiting for me this morning when I woke up. It would not have surprised me, however. The kids had a bit of trouble going to sleep last night and then we had to wake them all up to hide underneath the staircase during a tornado warning. Yesterday was fairly uneventful with the exception of the weather. We also had a tornado warning while picking up Sydney from school which found Ainsley, I, Sydney's class, teachers, and a group of other parents hiding in the girl's bathroom. Thankfully we were all spared and the kids just thought it an exciting opportunity to do something new and different. Graham, however, still has nightmares from a previous tornado warning in which he dreams that a tornado steals the covers off of his feet. If only it were that simple.
Graham has come down with a croupy cough which will send him to see Dr. Debbie this morning. Yesterday he had a 101.4 degree fever when I picked him up from school. Another highlight of the morning will be a trip to DFW airport to pick up DeeDee whose flight was cancelled due to inclement weather last night.
Believe it or not, twerp number 2 has already come down the stairs this morning. His cough sounds even worse and we are on our way upstairs to give him an albuterol treatment. Here, is to the start of a much calmer day that is already starting much more busily.
Purpose is always here.
6:22 AM 4/26/2007
Today is our 10th, the aluminum, wedding anniversary. Wow, what a sucker she is. I knew I had her snowed over for the first couple of years but this is getting kind of ridiculous. I have her completely under my spell. Yep, she is my little puppet. As long as I do exactly what she says and I make sure to say yes and no mam, she seems to stay. Indeed it is clear that I am in total control here.
This is a short update this morning because I need to focus on my honey on this special day. I also have to craft just the right gift. I am thinking vacuum cleaner wrapped in aluminum foil. Come on, it doesn't get any better than that. Just think, every time she turns it on she can think of me. How special, no? Fine! We had already agreed on something special previously. I just thought that it would be a nice tribute and remind her why she married me in the first place - I am pretty handy an honey dos, just like a vacuum cleaner. Still no, okay.
I am happy to report that all is well on the home front. I will update tomorrow on all of yesterday's activities. With two open houses at school, a play, a doctor's appointment for Graham, and a trip to the airport is was a full day of activity.
Today I have a very special purpose.
6:10 AM 4/27/2007
Here comes the weekend again. I am happy to report that I survived my anniversary. Thankfully she did not read my diary so she still thinks I am sweet and innocent. See, I told you I had her snowed over. As always this week was another busy one. On Wednesday, Graham visited Dr. Debbie. She put him on Zithromax, Pred, and Albuterol breathing treatments. His cough is still pretty significant but he is appearing to feel much better. He was officially diagnosed with Asthma. I thought that strange considering he had diarrhea and a fever as well but I have come to understand that these conditions combined with the changes in barometric pressure could have brought about the asthma. Regardless, he seems to be on the mend and is, at this moment, sitting on my feet watching the Wiggles on television.
Our visit to Sydney and Graham's school went very well. Grahams class sang a montage of children's songs such as the ever popular "itsy bitsy spider". They had a great time up on stage and seemed to really enjoy the audiences appreciation of them. After Graham's performance we quickly made our way to Sydney's school for her open house. She was excited to show everyone her new lost tooth which had been dangling from the top of her mouth for the majority of the day. This was her 4th tooth. I am still nervous about each tooth that is lost and fearful of what might come back in but I have become more tolerant as each tooth that has come in so far has been nearly perfect. We just never know what we are going to get.
Well, I had best be off. We are hoping for another nice and quiet weekend around the house. With the new landscaping in our back yard there is a need to reconfigure the sprinkler system. Lynley has already scheduled me to put in two new sprinkler lines in the back yard so you can expect to see me with a shovel in hand. It should be fun to spend another family weekend in the back yard.
It is what purpose is all about.
5:31 AM 4/30/2007
Good morning! We survived the weekend but I pretty shocked that Sydney made it through. We will just attest that to the fact that I am generally good natured and have superior tolerance and self-control. I assure you that any other parent may have traded her in on a different model. At times like these Lynley and I often wonder. Is it us? Was it all of the drugs? Is she just out of her mind? We just don't get it and never having raised a five and a half year old we really don't know what to expect. For this reason we keep trying new things until we find one that works.
I am completely blown away by Sydney's either inability to obey or sheer disregard for authority. She just does not seem to care until she is punished and isolated from everyone else's fun. And then, of course, it is fire works and temper tantrums. Let me put this as simply as I possibly can. Sydney knows not to climb on cars. But, for some reason she absolutely loves to climb on the hood of cars. Yes, this ends up in all kinds of dents and scratches so we are pretty firm with our reprimands. The first time we asked her to get off and to not do it again. We even explained the damage that could result. The second time was met with a stern reprimand, a trip to time out, and an explanation that "never meant never". As anticipated there was lots of yelling in time out (on her behalf) and we left her there to think about her actions. With all of the tears and crying you would have thought that this certainly would have left an impression. But no, this led to a fourth and a fifth and a sixth and God knows how many reprimands and trips back to time out. This has been going on for at least six months and yesterday I discovered her doing the same thing on DeeDee's Mercedes (thankfully no damage.)
This is just one minor example of this complete disregard. She can be such a good girl when she wants to be but obviously she is quite capable of turning to the dark side. This weekend was spent almost entirely on that side. I just don't get it but I have to believe Sydney spent most of her weekend in time out than out of it. And, it isn't like she likes time out. We have made it as uncomfortable as possible. She clearly does not like it. Yet, she keeps putting herself back in there. She understands the consequences. What is the deal? I can tell her not to do something. I can tell her that if she makes that choice again she will go to time out. I can close my mouth and the minute she thinks I am not looking she will do it. Then, I will punish her and she will be surprised that I am going to punish her for it, even though I told her exactly what the consequences were. This is always followed by fireworks and tears and lots and lots of crying. For Lynley and I it is followed by sheer bewilderment and the look of disillusioned awe.
I only wish I had the answers.
For now, all I have is purpose.
5:07 AM 5/1/2007
I am way to smart to think that I have cured Sydney of bad behavior. I know better. In fact, that statement is laughable. What I can tell you, however, is that Sydney had a much better day. Yesterday she was absolutely enthralled with her Daddy. In fact, I don't think she could have loved me more. From the minute she woke up she was the first to follow my direction. When she wasn't busy doing that she was just as busy hugging me and telling me how much she loved me. In all due honesty, the change in her was a little unsettling. She did everything that she was supposed to do without quibble and I never heard any disagreement in return. This efficiency left us with more time before school and a little time to just enjoy each others company.
After school she tested me a bit. She purposefully ran and hid from me when we went to Graham's school - a big no-no. With all three of them in my meager and quite questionable control I certainly don't need my oldest running off unannounced. I never really worry that the boogieman is going to get her at school but I don't like her running off and what if she does it somewhere else - less safe. First, it gives the other kids ideas but, second and third, it just isn't good behavior and it is an important lesson to learn when we are in a rather safe public place. For this reason I, once again, found her and I explained that she made a poor choice. I made my expectations clear. Furthermore, I told her that if she ran off again she would be put in timeout in the hallway.
Within one minute she had disappeared again. Wow was this enraging but, I kept my composure and put her into timeout. I did the whole list of things that I was supposed to do. I got down on her level. I looked into her eyes and calmly explained the who, what, where and why. Of course, then there were fireworks (not mine) and the usual barrage that accompanies such uncivil unrest. I calmly gathered up the rest of my gaggle of twerps who were politely having snacks at the table in Graham's classroom and we made our way out the door. Sydney was not happy but something was clicking. She was acting differently this time. There were synapses firing in her brain. You could see the wheels turn However, I was still unsure as to the outcome.
After we arrived home Sydney took me to the side to apologize. That was a shocker but she earnestly stepped up to the plate and took the opportunity to apologize for her behavior and to let me know that it would not happen again. I thanked her profusely - not gushingly, but enough to let her know that I sincerely appreciated it and I was proud of her.
The rest of the afternoon was spent in the back yard. The three of us had a picnic, climbed trees, played in the play house, and in the Gigaball. We came back inside just minutes before Mommy came home from work and had a pretty calm and well-behaved evening at home. In the end, I know that this is not the last battle in the war of raising a child but it felt good. It was progress.
It was purpose.
5:50 AM 5/2/2007
Yesterday the Wall Street Journal published a front page article above the fold called "Saying No to Penelope" I have created a PDF of the article here. The story was about John London, a father of a beautiful little girl with neuroblastoma, and his efforts to save her life. I have spent hours talking to John and, in fact, I wrote about our discussions during our last 3F8 treatment in New York just about five months ago. I truly care for John, Catherine, and Penelope and I have watched their struggles first hand. I have been amazed by his abilities to create change in the pediatric cancer world. For neuroblastoma, his impact has been no less than many of the other great parents that have led the fight. He has brought to the forefront the need for research and the need for a new and better way of doing it. He, almost single-handedly, was responsible for the Nifurtimox trial in Vermont and has been key in their continued research and focus on currently available drugs. This is key because it speeds up the time that it takes to get these drugs into our kids.
Whether he knows it or not, he has been a leading voice for neuroblastoma. Whether you know it or not, you have heard his words. John was one of the father's I talked to in creating my presentation to the NANT council this Spring. In fact, it was his Swedish fish story that inspired the short movie that I made to make the moral and ethical argument regarding the needs of families contemplating phase 1 trials. To me he has been an inspiration. Much of the work that I have started for the NANT has been a direct result of our discussions. Although I have disagreed with him at times I can certainly understand his point of view. He has helped to bring our desperation to the forefront and, because of that, real meaningful change is transpiring. People are listening and change is occurring. It was partially his inspiration that sent me off to study and learn about phase 1 trials and it has been because of that learning that trials are already beginning to be looked at differently. Trials coming out in our very near future will focus on our findings. Ultimately this will speed our search for the cure, increase the opportunity for efficacy for each of our children, and provide better and more complete data.
The fact remains that his daughter Penelope fights hourly for her life. They have literally expended every option in her fight and are now grasping at miracles. I have met Penelope and can tell you that she is every bit as cute and lovable as any one else's child, with or without cancer. Once again, there was no cause for her cancer. It wasn't because they lived to close to power lines. It wasn't because she was predisposed to cancer. It wasn't because her Daddy sniffed to many paint fumes. For some reason, she was chosen and for some reason their family decided to make a difference. Because she was chosen for this great fight all of our children will be better off. We will find a cure more quickly.
And yet, Penelope still fights for her life. Without treatment options or God's intervention she will die. They need a miracle and they need it now. If you have prayers, I would pray right now.
with hope and purpose...
6:09 AM 5/3/2007
Yesterday Graham had his 3 year old check up with Dr. Debbie. Other than the fact that he failed miserably at some exercises he was found to be above average on just about every scale that they measure. The Dudester is in the 75th percentile for both height and weight. Yew that is my big manly man. He also did quite well in naming colors, stacking objects, and speaking, doing all of the activities at a much older level. You can guess where he failed.
Dr. Debbie: "What is your name?"
Dr. Debbie: "What is your last name?"
Dr. Debbie: "What is your whole name?"
Dr. Debbie: "What is your Mommy's name?"
Dr. Debbie: "What is your Daddy's name?"
Dr. Debbie: "Graham I think you are kidding me.
Graham smiled, batted his eyes at her, and said "Yes....."
Clearly he was in fine working order. The only concerns seem to be his asthma which he now has an inhaler for. Lynley's theory is that it is operated off of allergies and we are taking him to get tested today. In some sense it sure was nice going into this without any expectations. We have gotten used to going into these year end checkups playing "Guess the long term effects of chemo." This was quite different. No worries about continued hearing loss from platinum compounds. No concerns over stature due to radiation. No concerns over adult teeth growth, secondary cancers, cardiac issues, pupilitonia, etc. The list just goes on and on. In some sense in brought to reality how difficult life is, not only for Sydney, but for all of those lucky people that survive.
Today Sydney has an oncology appointment. This will be her fourth blood letting for the vaccine trial that we completed roughly one month ago. I hope her feet hold out as this newer method of getting blood seems to work well for her. Here is hoping for an easy morning for the both of them.
Purpose, purpose, everywhere.
6:28 AM 5/4/2007
This will be a relatively quick update this morning as I have a meeting to prepare for but I just wanted to update everyone to let them know that we made it through our fourth blood letting. Unfortunately it took 3 pokes and we were never able to get enough blood, so we just sent off what we were able to collect. Graham had a blood letting of his own for some allergy testing and it went off without a hitch. He was a truly grown man and did very well. He did not shed a tear or a sound. Well, I had best be off.
There is a pile of purpose today.
5:19 AM 5/7/2007
Good morning! Generally speaking, we had a pretty good weekend. For the most part the kiddos have been good although Sydney continues to challenge us at nearly every turn. I mentioned this challenge after last weekends festivities. It seems to be a bit better now but there is definitely some element that continues to linger on. I have tried a couple of different methods with her to get to the bottom of the behavior. Oddly enough, I have discovered that (in the short term at least) as long as I give her everything she wants, the moment she asks for it, without delay, she seems to be pretty well-behaved. Isn't that funny. As long as I cater to every one of her whims promptly she seems content. Ironically, no matter how much I give her, the moment I withhold even a single desire the behavior comes back. I am guessing that I have discovered selfishness and greed. Have we created a spoiled brat?
Whenever I think of a spoiled brat I always go back to the little girl in Willy Wonka's chocolate factory who ate the "every flavored gum" and turned into a giant blueberry. Although Sydney's behavior is no where near as bad as this, it does bring the point home. She clearly thinks that she can do anything she wants and that she can have anything that she desires. Who does she think she is - me? I may have to have some oompa loompas come over and rough her up a bit.
The behavior just continues to amaze me and I am beginning to learn that punishment just seems to escalate the issues. I can't tell you how many times we have walked through the grocery store and seen the metamorphosis take place. First we begin by explaining the mission. We are there to get food - not toys, not candy, and not anything that is not on the list. It always starts off relatively benign. Can I have the swirly cheese? Well sure, what's the big deal? The list says cheese so what is wrong with swirly cheese. At this point we feel proud. We compromised. The problem is that she discovered a chink in our armor. Then we get into the iffy areas like ice cream or candy. Sydney: Can I have some ice cream. Me: No, we already have ice cream. Sydney: Well, we don't have blueberry fudge nut with sprinkles. Me: No, but when we finish the ice cream at home we can get this. Sydney: You're a meany! Me:: Watch your mouth. Sydney: I am going to tell Momma and the policeman. Me: Okay, do you want to do that right now? Sydney: If you don't let me have that ice cream I will never listen to you again. Me: Sydney, we aren't getting the ice cream and don't threaten me or you will have to ride in the cart. (she hates this) Sydney: I am a big girl. Me: Exactly. Sydney: Well, if you don't treat me like a big girl I won't let you come to my birthday party. Me: (I put her in the cart) Sydney: Let me out. You are mean! I am going to tell mama - and so on and so on.
You see what I mean. It just continues to escalate and get worse. As long as I do exactly what she wants she will be a great little girl but I am also smart enough to know that it just leads to the next thing that she wants. If it was not about the ice cream it was about the thing in the next isle. She is going through a phase of testing her limits. However, I think she is doing a better job testing mine.
I am not complaining. It is a challenge and this is what parenting is all about. I just have to keep reminding myself about that.
After all, it is my purpose.
5:07 AM 5/8/2007
After Graham's name debacle at Dr. Debbie's, Lynley has been madly testing all of the kid's for signs of intelligence. Well, I guess working with the kids would be a better statement. Nonetheless, with Ainsley next on the chopping block with her two year check up, Lynley has been making sure she was up to par. They started with names.
Lynley: "Ainsley what is your name?"
Lynley: "Ainsley, What is my name?"
Lynley: "What is your name?"
Lynley: "What is his name?"
Ainsley: "Graham." (pronounced Gr - ah - m)
Lynley: "What's your name?"
This went on for quite a while and Ainsley never gave up on the fact that she was "Cute." She really stuck to her guns. Oddly enough, she knows that she is Ainsley. I think that she is just more "Cute" than anything else. And, indeed she is.
It is her purpose.
5:15 AM 5/9/2007
Good Morning! Yesterday included a visit to Dr. Debbie for Sydney. It turns out that she is multiply infected. She has both an ear infection and a yeast infection, neither of which is a particularly pleasant experience for her. There is no doubt that the yeast infection is the worst of the two. This presents some unique challenges for Sydney. You see, the treatment for the ear infection includes an oral antibiotic which could aggravate the yeast infection. This could have the end result of delaying relief from the yeast infection which is already incredibly uncomfortable for her. Given the fact that she is already lacking sleep due to the itching and burning we have decided to just use a topical antibiotic (ear drops) to treat the ear infection. In the meantime we are hitting the yeast infection hard, hoping to get it under control. We are using a two drug antifungal approach of Nystatin topically and Fluncozole orally hoping that we can get on top of it quickly. Treating the ear infection so mildly is a bit of a risk but at least it is a calculated one. The ear infection is in the ear that still has a tube. Believe it or not, the belief is that the infection juice (I know, great medical term) has not risen to the point where it will drain from the tube. In this sense, we believe that it will be relatively easy to treat the ear infection. Furthermore, Sydney's ear is more of an annoying tickle than an outright pain. We are betting that we can get on top of the yeast infection without letting the ear infection get any worse and we are under the belief that we might even cure them both. Regardless, it was still a very uncomfortable night for Sydney. She was in our room several times last night looking for relief. In fact, she is already up and at my feet on the couch as I type. Here is hoping for some relief.
I know it will be my purpose today.
5:18 AM 5/10/2007
Do you ever have one of those mornings that you just want to mope. I am having one of those mornings. This is one of those times in life that I feel as though I have had all of the cheeriness sucked right out of me. It isn't my life. In fact, right now, my life is going spectacularly. I am too busy and not accomplishing all of the things that I would like to but other than that things really could not be better. Right now, it is neuroblastoma that has me in the dumps. This is a bad time in the world of neuroblastoma. There are many families that I am really close to that are having a very difficult time right now. Every morning I have a routine of reading 5 or 6 different sites to catch up on various families. This morning every one of these families were dealing with the worst of the worst, everyone of them in the midst of a relapse and for the most part none doing well. I hate it because I have lived enough of many of these emotions that I know exactly what they are feeling. Also, I know enough now to be moderately dangerous. In many cases, I know exactly what is coming. For others it has been a shock. Bryan Tressler has been fighting a relapse for as long as I can remember. In fact, I can't remember hearing the world neuroblastoma without the Tresslers being in this world. Bryan was 5 and a half when he was diagnosed and I believe he was 14 when he passed. I should probably say that this young man lost his life to an infection while trying to battle his disease last weekend. I don't even know what to say to his father. It just is not fair.
Others, and there are many, need prayers and hope. Paul Saxon is in the midst of a flair up of his disease and Elesha seems to be amidst a similar progression. Penelope London continues on but without therapy or their hope for a new oncolytic virus to try there is little to look forward to. I am in tears when I hear her father describe the tumors and pain that continue to plague this little princess. Disease is now widespread and visible tumors are everywhere. There are many other families as well. There is Nick who just relapsed late last week and I find myself again in tears as I read the mother's words. I know exactly what she is feeling and I can feel it again through her words.
All of this is a reminder of the world in which we live. Every one of these families were diagnosed with stage IV neuroblastoma. Every one of these families fought through mountains of chemotherapy, radiation, and immunotherapy to achieve a remission. Every one of these families believed that they achieved a cure. Every one of these families thought that they were one of the lucky ones. Every one of these families had their child relapse and now many are fighting for their very lives. It is days like this that make life look less rosy but it is also days like this that remind me of how important my purpose is. It is unfortunately the fuel the stirs the fire. I must do more and I must do it more quickly. We are still losing.
It is purpose.
5:33 AM 5/11/2007
This morning I am going to write in my diary before I even begin to read the other websites that I follow. I am doing this because I have what I think is a pretty funny story to tell. Now, first off, I want to tell you that to explain this story you have to have a certain understanding of a certain stereotype. I have no interest in being sexist or racist. It just so happens that to get a clear picture in your head the stereotype might help. What I am talking about is the attitudinal head bobbing that you see some females do when the think they feel hat they have been disrespected. Typically it is followed by a barrage of words sounding something like:
"Oh no you didn't. You can't disrespect me like that. Don't you dare do that to me."
In this instance, it is accompanied by head bobbing and weaving all over the place.
Okay, now that we have a visual I can proceed with the story. The other morning when I went upstairs to shower and dress the kids I found them being particularly difficult for their mother. I jumped right in, turned off the television, and asked them to get dressed. In the mornings they would much rather watch the Disney channel than get ready for school. Anyway, the moment I turned of the television, Sydney went off on me. I don't even remember the tirade. Sure enough, as she spoke her head was weaving and bobbing back and forth. She was exuding attitude. She was saying something like:
"You can't turn the TV off. I was watching that. You can't just come in and do that. If you do that then I won't listen to you anymore today. (blah, blah, blah.)"
Under normal circumstances I would have been angry with her for using such a tone with me. But, for the life of me, I could barely contain my composure. It just struck me as so funny that this little girl was giving me so much attitude, furthermore, she had all of the head bops down. It was straight out of an episode of Saturday Night Live. The appropriate Daddy thing to do would have been to sit down and talk to her. I should have coolly and calmly sat down beside her and explained that she made a poor choice in how she treated her Daddy. Yes, yes, I know all this. But, that is not what I did. What I did was begin by cocking my head back and forth, with my hands on my hips and I went off on a tirade right back at her. It was something like:
"Why are you moving your head back and forth when you speak to me? Are you afraid I might try and touch your head? I don't think that was a nice thing to say to your Daddy? Don't I look silly with my head bobbing all over the place? Do you think I make more sense when I move this way when I talk?..."
She was livid. She picked up a shoe and threw it on the ground next to me. This was really the point that I should have stopped, sat down, and did the respectable Daddy thing. After all, I am supposed to be the adult here. However, I had figured out why so many people did it, this head bobbing thing. It was fun to have attitude like this. Instead I sent her to time out in her room for throwing the shoe "near" me. All the way I walked down the hall behind her bobbing my head back and forth and saying things like "How dare you throw a shoe near me? You can't disrespect me like that? I am going to tell your mother (who happened to be right there) and then how will you feel?" I am quite sure I looked incredibly ridiculous and it did absolutely nothing to calm Sydney down. She was still mad that I made fun of her - and rightly so.
I am not saying I did the right thing. In fact, I am pretty sure I did exactly the wrong thing. However, Sydney no longer bobs her head back and forth with attitude like that when talking to her parents.
It wasn't good purpose but it still was purpose.
4:58 AM 5/14/2008
Good morning! I know that noone is really concerned but I want to let you know that I survived Mother's Day. Sure, I know, it isn't about me. But, if it wasn't for dedicated fathers like us who get in the car and drive all of the way to Kentucky Fried Chicken, how would we eat Mother's Day dinner anyway. Yes, it was a huge sacrifice. I am one dedicated father. Can you believe that of all of the choices for dinner that my mother and Lynley could have chosen they chose to have a delivery of Kentucky Fried Chicken? In all due honesty, I can understand. There is something to the easiness and lack of stress of take out food. Plus, you get to spend all of that time with your kiddos and you don't have to get all primmed and proper to go wait in line at a restaurant for dinner as the couped up kiddos struggle to contain their energy. Casual laziness, there is no better way to spend Mother's Day. As much fun as I could make about Lynley's choice for dinner it really was a lot of fun. All of the kiddos loved the food and the adults did not complain too much either.
I have not mentioned it before but today is the beginning of a rather full week of scans. As always, it marks the beginning of a nervous time around the Dungan household. Early this morning Sydney has a bone scan scheduled and then, following that, a visit with the CT machine. We have not had a bone scan in years so this ought to be pretty interesting. Bone scans make me especially nervous. I have a rash of non medically founded and completely unsupported reasons as to why I don't like them. I guess my first reason is that we have had many occasions that there was something indicated on the bone scan. Some of these times it was disease but at other times it was not and several times we just did not know. Positive results also seem to take a long time to resolve. One of the other reasons that I don't care for them is that Sloan just does not use them. If they don't have high trust in them then why should I. After all, they see and diagnose more neuroblastoma and relapses than just about anyone. I guess my biggest issues with bone scans is that they seem to be pretty highly sensitive but not highly specific. In other words they can pick up something as benign as a shin splint or bruised bone but are not specific enough to tell you what the cause is. Is it neuroblastoma or was it a kick to the shin in the playroom. It can be difficult to tell. Regardless, it can and frequently has been the source of a lot of anxiety around the Dungan household. I fear a positive result and the potential weeks and months of unconfirmed worry as we wait it out. Is it a time bomb waiting to explode or a little boo boo?
Well, I had best be off. There is much to do to get all of the kiddos shuffled into their appropriate places this morning before the fun begins.
Today will be full of purpose and nervous anxiety.
4:21 AM 5/15/2007
Yesterday was a perfectly good example of why I don't like bone scans. Sure enough we were chatting away with Steve and Margaret as Sydney inched her way through the 20 minute bone scan (moving at 12 centimeters per minute) It is amazing how closely we have become to our nuclear medicine team at Cook's but that is an entirely different story. Anyway, sure enough I was in the midst of nerd talk, learning that the contrast used in the bone scan was actually more of an indicator of osteoblastic activity. Just so you know this further arms my position that the bone scan lacks specificity for neuroblastoma specifically. Again it is a sensitive tool to find damage in the bone but neuroblastoma is one of many, many things that could be damaging the bone. Anyway, we were all jabbering away and we even taught Sydney had to read the scan.
Then it happened. Steve asked me if Sydney had been complaining of any pain. This was radiologist speak for "there is something on the scan." It took a moment to process what was going on but, sure enough, I looked up and coming into view was a rather large abnormal spot just above her right ankle. "What is that?" It was really a rhetorical question because I new we were all asking the same thing. Steve said, "I don't know" It took a moment for all of our minds to click. I know my mind immediately went in to panic mode. At that moment I was not fearful but my mind began racing thinking of everything at once. It is hard to explain but I call it preservation mode. It takes a moment to kick in but once it does it is must more efficient than my normal state of mind. It is what allows me to make somewhat rational decisions when confronted with terror. Regardless, very quickly it all became clear and I think we all made the same realization at the very same moment. Could it be Sydney's peripheral IV. Sure enough, that is where it had been.
Lynley and I had remembered some difficulty getting the IV into her saphenous vein. They had a great blood return but somehow it had slipped while being secured and it had to be repositioned. The injection of the contrast followed the IV placement. Could this have allowed the contrast to leak out? As the picture became more and more clear we could see that the spot was much larger than the bone. It was becoming more obvious that if this truly was a positive finding that the tibia would have a large knot in the bone. Certainly this would be something that we could feel if it truly were an issue. Remember, the contrast is not attracted to neuroblastoma. It is attracted to boney destruction. So, the fact that we could see it outside of what would be normal bone indicates that it somehow escaped into the tissue. Just to ensure that we were on the money we placed Sydney in the "praying froggy" position, a great yoga move but an even better position for seeing what was going on in Sydney's leg. After this scan became clear it was even more evident that we were not dealing with disease. Catastrophe avoided.
I don't have the official results from either of the tests but as you can see from above we have ruled out the most serious of indicators. We are hopeful that the final reports of the CT and bone scan do not see anything else. This morning Sydney is scheduled at the hospital at 6:30 AM for her bone biopsy and marrow aspiration. She is due on the operating table at about 7:30 AM.
I had best be off. There is purpose afoot.
5:24 AM 5/16/2007
Yesterday was a very difficult day. Thankfully, Sydney was just fine. She endured her bone biopsy and marrow aspiration well. The only small annoyance was the fact that the anesthesiologist decided to intubate her. Usually the just give her a little propofol and let her drift off to sleep but this time they gave her the anesthesia big guns. This kept her from school the rest of the day. Regardless, the process went smoothly for Sydney and she came out of recovery slowly but completely. We still have not heard about any of the results of her scans but these were not the reasons that the day was so difficult.
I have not mentioned it in the diary but we have been fighting for one of our dog's lives for about a week. Kacy, the oldest of our two dogs (16), has been fighting all kinds of problems with her kidneys. Each morning and night we have been giving her fluids and injections of pain medication, nausea medication, antibiotics and just about anything else you can think of. Unfortunately, she just has not gotten any better. She was in a constant state of pain and had lost her ability to walk or control her bladder. We bathed her frequently and tried to make her comfortable but it was clear that she was just suffering. Late last night after it became clear that she was not going to turn the corner and that she was continuing to get worse (we were seeing signs of DIC) we made the decision to euthanize her.
This also meant that I had to let Sydney know that Kacy would be going to heaven and that we needed to say goodbye to her. It was difficult for Sydney. Although Sydney was not particularly close to Kacy (I was her only love), she has been a constant fixture all of Sydney's life. It was difficult for her and many tears followed. We spent quite a bit of time talking to Sydney and trying to make her understand that Kacy would be happy in heaven. Sydney asked some very tough questions but also some very touching ones that left us smiling inside. Here were a few of those:
What do doggy angel wings look like?
If your body goes up to heaven does your heart still work?
Can we bury her in the back yard so that we can dig up her bones when we miss her?
If heaven has all of your favorite things, it would have a pool, right? Well, if the pool leaked, is that what makes rain?
Eventually we calmed her and I made my way out to pick up Kacy and drive her to the veterinary hospital where close friends made special arrangements for us. I was able to spend a few last quite moments with the doggy I had been with since college and they let me hold her and bring comfort to her as she went to sleep the last time. She was comfortable at last.
She was a good dog and I will miss her dearly.
She was part of my purpose - my family.
6:27 AM 5/17/2007
This will be a very quick update this morning. I am ecstatic to announce that Sydney's bone scan and ct scan came back negative and the preliminary review of her bone marrows was negative as well. This, of course, is great news. Today we have our final scan, the MIBG. It is scheduled for 8:30 this morning. Yesterday's injection went terribly. It took 4 pokes for them to finally strike IV gold. For the week she has had a total of 9 pokes for IVs. Thankfully, she should have about a 6 week break before having to go back for another.
I cut a deal with Dr. Eames regarding the scan results. I should know the details of all of our scan results tonight and I will post as soon as I know anything. You see, tomorrow morning I am traveling to Houston to support another family who is having a golf tournament to raise funds for neuroblastoma research at Texas Children's. I am not technically allowed to leave the house during scan week and Lynley only agreed to allow me to go if we had all of the results from the tests. So, to make a long story short, I asked Dr. Eames to send me a quick update so that I could play in the golf tournament. Yep, if anyone wants to go I will be leaving the house at 4:00 AM in the morning and I will be driving back tomorrow night. Hey, it is a long day but for a good cause.. I promise to update my diary before I leave.
I like it when purpose and golf commingle themselves. I might just have to create a golf tournament for neuroblastoma about 3 times per week.
4:14 PM 5/18/2007
5:53 AM 5/21/2007
Good Morning! After a very busy Friday a spent a very relaxing weekend at home. I completed many of Lynley's chores but you could find me most often sleeping on the couch while the kids were napping. Have you ever had one of those weekends when you felt like you just could not recover from tiredness? Well, that was my weekend and after some Benadryl before going to sleep last night I think I have finally caught up.
The golf tournament was a huge success. It is always a bit strange going to a different city where you know very few and then playing in a golf tournament where you don't know anyone. However, there is also something strange about being a card carrying member of the neuroblastoma club. From the moment I walked in, I had an almost instant bond with these families. The tournament was in honor of Grace Scasny who lost her battle with neuroblastoma late last year but there were several other families with children that had neuroblastoma that were also present. I still don't know what it is that makes these people special but the understanding is almost instant. When you have a child with neuroblastoma you become one of the club immediately and it is a bond that will last forever. It is a difficult concept to explain but it is so entirely true. In a sense, without even knowing anyone you already know you are surrounded by friends.
The tournament went well and the next thing I knew I was being ushered over to the Scasny's house. There they had a little party and I got the chance to get to know everyone a little bit better. Dr. Heidi Russell was there as well and I spent a large portion of my time talking to her. We talked about many subjects and finally decided that we needed to have some focused time to discuss these issues and set up a meeting for later this week. Dr. Russell is one of my favorite oncologists and researchers and I always love hearing things from her perspective. They are testing many new ideas in Houston and I have high hopes that they will find something significant. They are one of the few groups around the world that are really thinking outside of the box. This is not to say that others aren't doing good things. The point I am trying to make is that Texas Children's is trying truly new ideas as opposed to new twists on old ideas. They are definitely not status quo and are looking at new innovative treatments to increase survival and decrease toxicity. I am sure there will be more on this topic in the next few days.
I am happy to announce that all of the kiddos are safe and happy. Lynley did well at handling the gaggle of twerps on Friday and they seemed to have a pretty good weekend. I am ecstatic to announce that Sydney read her first book all by herself this weekend. I am sure that is probably a fairly normal occurrence in this day and age but I was blown away. I don't remember reading until I was in first or second grade and here my daughter is doing it before she even enters kindergarten. Please do not let her know that she is smarter than I. This, by the way, is due to Lynley's expert tutelage. I kill neuroblastoma. She creates brains.
Well, I had best be off. I have a busy week before me and there is a mountain of purpose to climb.
5:53 AM 5/22/2007
Good morning! I have been delaying writing in my diary all morning. It isn't a particularly good morning and I did not want to sit here and right a bunch of fluff when I could be doing something to help someone. Furthermore, I have been sitting here with my fingers on my keyboard trying to write two important emails and I just can't bring myself to touch the keys. I guess the term "it doesn't get any easier" really does not even begin to do any justice. As long as life is going well, as long as Sydney stays out of the clutches of neuroblastoma, life around home does get easier. My life as a Dad with a child that has cancer gets easier. With everyday of a continued remission we get more comfortable and life goes on. No regrets. We keep plugging away. The tears I shed are not for us. But, the good news is that life can continue to get better and we can be lulled back into some sense of security. There is always fear but only a smidgen of what we have learned to live with. Our lives do get easier. We can be more carefree.
What does not get easier is living in this world with other families. Everyday there is another child progressing, everyday there is another child dying, and everyday there are more children and families entering our world. It is relentless and more often than not there are more reasons for tears and less for happiness. I hate this disease and I hate it even more when I can't help. It is so nice to be able to talk to a family and give them hope and ideas on what can be done. Many times there are answers or at least good choices. Many times I know exactly what decisions need to be made and exactly who needs to be talked to. In this sense I can be confident and know that I can help. But in others, not so much. There are some that I can't help where there are no answers. There are times when it is not clear and many times when it is too late. So, here I sit poised at the keyboard trying to write to two Dads.
The first is to Penelope's Dad. Yes, she passed away on Saturday. What do I tell him? What do I say? I can't even begin to comprehend what he is feeling. What do I say to such a great and dedicated father? I know I can't make it any better. How can I help him?
My other email is to another father, a father who has made the best decisions at every turn. He has done everything right, every time, and yet I wake to find his son is progressing. He is smart enough to know everything I know and more. It is once again an example of how terribly unfair this disease is. What do I tell this father? He is dedicated too. How can I help? He is doing everything right and everything in the best interest of his son. What do I tell him that he does not already know?
It seems this morning I have far more questions than answers. Some days the reality of this world weighs just too heavily. Neuroblastoma is constantly unfair and unrighteous. And yet, I know, everyday there are miracles. Everyday another child turns the corner and everyday another child that wasn't supposed to make it does. Everyday a child achieves a remission and everyday another child makes it through the journey. There is hope. I am still working on what to say to the first father but I think I have figured out the second.
There is hope. That is my purpose.
5:25 AM 3/23/2007
My son is anal. I really don't think much more than that needs to be said. I love the boy but he was certainly blessed with my unique gift of obsessive compulsiveness. He just displays his powers to annoy a bit differently than I. At school the other day Graham finally drove his teacher to the edge. You see, Graham has some fairly big issues with two items. First, he is tag intolerant. You know, the tags in back of shirts. Graham hates them and if it they are not lying perfectly straight he will launch into a frenzy of "Tag gettin' me" as he runs in a circle trying to escape from the evil tag. Yes, that's right, my son. So ,as you can see he has some issues. Normally I would be concerned, and, in this instance, it is about par for the course. I have my own issues as well. I have just learned to deal with them.
The second issue with Graham is his shoes and socks. There are many mornings when we will take them on and off several times because he claims his shoes don't "feel" right. Usually his sock is bunched up, there is a rock in his shoe, or the tongue is crumpled. However, many times there is no visible rhyme or reason why the boy is freaking out about his shoes. I must admit. It can be quite frustrating to put on his shoes for the fifth time in the morning because he says they are getting him. This can be made worse by the fact that we are in a hurry and trying to get all of the kids out of the door. Regardless, this shoe issue has gone on for years and probably since the time he could walk. There is no other excuse. The boy is clearly mine and clearly mental.
Regardless, after taking on and off his shoes in the neighborhood of 30 times one morning, Graham's teacher finally reached her analocity threshold. She could not take it anymore and just let him keep his shoes off. She then begged us to get the boy some new shoes. Now, I secretly know that will not do any good but I am more than happy to oblige to preserve some of her sanity. So, yesterday afternoon, I was off with Graham to get some new shoes. Keep in mind, his shoes are perfectly fine. They are a little worn at the soles but they are of perfect fit.
I began with the first pair of white tennis shoes I could find. Graham has really been into baseball lately and these were decorated with baseballs, basketballs, and footballs. Perfect! I sat the boy on the ground while the other two rugrats played in the cart above us. I slipped on the first shoe. "No take it off! It doesn't feel good" I tried a half size larger. Same result. I tried a full size larger. Same result. This time he claimed they were all too big so I tried a half size smaller. Too big? Then I tried a full size smaller. Big, again, eh? In the end, I tried this shoe on the boy with every size from 3 sizes too small to 3 sizes to big. He thought they were all too large but considering the fact that there weren't enough physics in the world to cram his toesies into the smallest pair I began to think we just had a communication issue.
I decided to try another pair. These had Spiderman on them and were sure to work. I went through the same range of shoes only to find out that all of the shoes were, once again, too big. I then made my way through every tennis shoe in every size only to have every single one of them turned down because they were too big. In all I must have put around 50 shoes on the boy. I finally accepted "defeet" and moved on. Graham won (or lost, I am not sure) and we did not end up getting him new shoes. I am sure I will never hear the end of it from his teacher but, unfortunately, in the world supply of shoes there is nary a pair that is not too big for the boy. Frustrating! He has mastered my gift too him.
And you though my purpose was just a clever anecdote.
6:03 AM 5/24/2007
I had some really interesting email yesterday. One was concerning my entry from Tuesday. To them, I left the impression that I was stating that educated parents "deserved" to have there children survive neuroblastoma. I thought that was an interesting take on what I said but I certainly want to clarify that it was not what I intended. Simply put, we can make all the right decisions for our children and still lose the battle. It is a sad and awful reality but one that is an indicator of how desperate we are and how important it is to find a cure. But yes, even if we do everything right, it does not mean our child will survive. However, the opposite of that is not true. If you make poor treatment decisions regarding your child's treatment it can certainly lead to treatment failure and even death. This is one of the reasons that I am such an advocate for families educating themselves. I can't tell you how many parents I have met that have been treated by an oncologist that led them in the wrong direction. I honestly don't want to go into the nightmares because as much as they illustrate the point it is real children and real parents who have endured this malpractice and it has often, if not always, led to progression and death. They are real people.
It is hard to believe that, in this day and age, this type of problem exists but I assure you it does. I have seen children at major children's medical centers in major cities in the United States go into surgery to have a tumor removed, come out, and have a surgeon report that it was completely gone - only to have follow up scans weeks later which show large amounts of bulky tumor that were left behind. This wasn't miraculous growth. This was negligence and had it not been caught and resected properly it would have certainly led to a relapse. I can't tell you how many patients I have met that have had misread MIBG scans or were lead to believe they were clean when, in fact, extensive disease was all over their bodies. I have seen the same types of things happen with chemo regimens, transplant, and a multitude of treatment related events. There are a lot of unknowns in the treatment of neuroblastoma but there are also some pretty tried and true steadfast rules that need to be followed. We, as parents, need to be aware of these to be the best advocates for our children that we can possibly be.
Now, with all of that being said. I don't want to be an alarmist. I don't want to scare parents and families. I don't want to be the guy that stands on the corner and shouts that the world is coming to an end. In the same sense, I want everyone to be prepared because it does happen. Period. And, it is more likely to happen than it was likely to get neuroblastoma in the first place. Be aware and be knowledgeable.
The parent that I received this email from actually advocated for families to only be treated at major neuroblastoma centers. This came from someone that had an extensive medical background and worked in pediatric medicine. This came from someone who knew and came to this conclusion after enduring some pretty poor decisions from their oncologist without knowing any better. It wasn't until someone pulled her aside and basically whispered "get your child out of here and to a major neuroblastoma center," that she figured out what was going on. This was a person with extensive medical experience and the veil was over her eyes, too.
I still don't know whether I agree with her. Sydney was treated at Cook's. They are not an official neuroblastoma center but they are on top of the research and their games. I would say that some of them are even more on top of their game than some of the specialists I know. I feel confident that we made the best treatment decisions possible all along the way based on what was known at the time. Most importantly they were not afraid to pick up the phone and discuss their patients' cases with anyone that might have insight. As much as I understand the value of being treated at a neuroblastoma center I would be hard pressed to make the statement universally based upon my own experience at Cooks. Still, I don't have to go very far in North Texas to find evidence that the opposite is true. I can't tell you how true. There is at least one major medical center in DFW that has more examples of malpractice in neuroblastoma treatment than success. How do those patients feel about their oncologist? Do they feel the same way I feel about my team. Probably.
Again, I don't say this to scare. But it is our job as parents to be aware and to advocate for our angels. There are no guarantees but there is hope and support.
We all have purpose.
5:15 AM 5/25/2007
Good Morning! Well, here we are another Friday and I feel like the week hasn't even begun. I still have plenty to do and there just is never enough time to concentrate on the things I really want to. Most in the family seem to be doing pretty well. Sydney had her end of school party yesterday and today will mark the end of her first year at Southwest Christian. Next week the whole gaggle of Dungan's will be going back to Arborlawn Methodist for the summer. It will be strange to have them all at the same place. Just one place to drop them off in the morning and just one place to pick them up in the afternoon. What will we do with all of that extra time?
Graham seems to be a bit under the weather. Last night he spiked a fever (101+) and threw up all over the place. I am guessing that it is some kind of virus and we will see if we can get him in to see Dr. Debbie today. He will be staying home from school today. This is on top of his other issues that I discussed earlier this week. Someone wrote in the guestbook that it sounded like he had a sensory integration disorder. We discussed this with his pediatrician. Although Graham does show some minor signs most of the other common symptoms he does not have. Yes, it can be annoying at times but for the most part my little Dudely is still fully functional. For this reason we have decided to educate ourselves but at this point we won't be pursuing an official evaluation. For us, we will be following a wait and see approach. Like the rest of his family he is mental. We don't need an official diagnosis for that. It is pretty clear. We are the Dungan 5. We are "special" people.
Have a great weekend. I will be with my purpii.
4:06 AM 5/29/2007
We had another successful holiday weekend. As is usual, it was jam packed with activity. On Saturday Graham enjoyed his first baseball game ever. He was decked out in his Rangers uniform ready and raring to go. The rain let up and it turned out to be a perfect night at the ballpark. We gorged ourselves on hot dogs, peanuts, and nachos. This also marked another first. Now I know this probably won't be the highlight of your life but it certainly was for Graham. For the first time, the little Dudester stood while going to the potty. This was a huge milestone in his manhood. He was clearly excited but unfortunately had not mastered the man-rules of the urinal wall. Sure enough he was peaking up and down the wall of urinals and, as he neared completion of his duty, he loudly uttered those words that still shake me to my core, "Gosh daddy, he sure has a big one." Thankfully the man was good spirited and, obviously operating on the high of my son's appreciation of his big who-ha, played along. He told Graham what a big boy he was for using the urinal and, of course, Graham was beaming from ear to ear. Oddly enough, so was the man. So, that ended our bathroom debacle. I think enough has been said.
The following day (for those who remembered) was Ainsley's Birthday. She officially turned two on Sunday. Late that afternoon we had a party for her at the house. As is typical with Ainsley, she had an absolute blast and was just happy to share it with anyone who was around. She is the consummate partier and it is already clear that she will be my biggest teenage challenge. She received several gifts. All of which were pink, her favorite color. She had great fun watching her brother and sister open her presents and gave off the impression that she was quite pleased with their servitude. She was clearly wired, hyped up on sugar and whatever it is that makes kids totally nuts. At one point I even commented on her climbing the walls like a monkey. She looked straight at me and said, "No Monkey, Twerp!" This was Ainsley-ese to tell me that she was indeed not a monkey but, in fact, a twerp. She was right. The big surprise for all of the kids was a trampoline that had been constructed in the back yard while they were sleeping. This was a combination birthday gift for both Ainsley and Sydney, although Graham did not get a bad deal either. The kids were ecstatic and spent the rest of the holiday jumping when it was not raining.
Now, many of you may have your fingers poised and ready to call CPS. After all, how could we get our children such a death trap. Rest assured, we put a lot of thought into this and with the proper supervision and rules we think it will be safe enough for the kids while providing some excellent exercise. For starters, there is only one allowed on the trampoline at a time and the are each limited to five minute turns. So far it seems to be going well and they are learning quickly. Sydney has already mastered several tricks and seems intent on learning more. So far, there has been only one injury. Somehow Sydney's knee ended up in her mouth. There were a few tears, a trickle of blood, and then she was back to bouncing. It taught her a valuable lesson. Clearly her knee cannot fit in her mouth. Now she knows. See, it is a learning tool as well.
All in all, it was a pretty good holiday and we are fully rested and ready to get back into the grind. It was a weekend of purpose ready to be followed be a week of one.
5:29 AM 5/30/2007
Hand - foot - mouth disease! Can you believe it? My son, the dudester, has hand - foot - mouth disease. I told him this would happen if he kept licking trash can lids. His poor little hands are just covered in vesicles (blisters). Currently the right hand appears to be the worst with approximately 20 little blisters on his hand. The left is not far behind and, although his feet and mouth are still not showing any signs, we are quite sure that it will get worse from here. I am happy to say that, at least at this point he does not seem to be uncomfortable. He did not even know the little blisters were there. We found them quite by accident while getting him ready for bed last night. We do know that he is extremely contagious. We just do not know for how long. Right now, we understand that we can expect about 5 to 7 days of the illness. So, for the time being, we will stay at home.
Yesterday was Ainsley's first day of school. She has officially graduated into rugratdom. Although there were many tears shed during the first drop off she seemed to make it through the first day just fine. She has an oversized Dora the Explorer backpack (with wheels) and takes great pride in rolling it around behind her. She is very much in control and it is clear that she thinks herself such a big girl. We are daytime empty nesters for the first time in the existence of the Dungan five. I tried to tell Lynley that this must mean it was time to have another.
She still has not spoken to me.
At least my purpose is here to comfort me.
5:12 AM 5/31/2007
Well, we have finally gotten down to the Hand - foot - mouth disease. When we reported his case to the daycare the let us know that during the previous week there was another child in his class that showed signs of Hand - foot - mouth disease. Apparently, they were even kind enough to post the information. With Graham out on Friday and part of Thursday due to strep we simply missed it. The good news is that Graham continues to feel great and, in the end, he was allowed to go to school yesterday. Apparently Hand - foot - mouth disease is so common and so contagious, and so benign that they don't make any effort to contain it.
About midday we received a call from the school. Ainsley spiked a 102 degree fever. At this point we really don't know the cause. It could be a reaction to her vaccination from the day before or it could be the initial sign of hand - foot - mouth disease. We will take it day by day and see what happens. If the fevers went away or whether they continued to be the same we really would not know the difference. I guess the only way we will really know is if little blisters appear on her hands. Let's just hope that does not happen. Lynley just went up the stairs and the fever is still present. I guess we should just start hoping that she stays relatively comfortable and that the fevers are manageable.
I really don't know if I am at liberty to discuss any of this next topic but I am going to go ahead and do it anyway. That has never stopped me before. This is a fascinating subject (to me) and I think it is deserving of further investigation. As I have become more involved with research I have learned a tremendous amount and every day seems to bring more and more interesting issues. The CNCF has been discussing funding a particular phase 3 trial and for that reason I have become very involved in researching the drugs that will be used and studying the issues related to the design of the actual study itself. I bring this up because I want to make some important distinctions. It always seems that we as parents are complaining about why a particular study was created a particular way. What I have found is that even simple decisions are put under huge scrutiny and there is much more involved. There are usual 100s of factors that go into these decisions. In this sense it is also a political process so it is important that we as parents advocate to keep the issues separate. Regardless, here is our first stab at funding a particularly major trial and I intend to give us an up close and personal look at the major factors that go into designing a trial such as this. We will debate issues. We will look for solutions and, in many cases, I think we may make compromises. But, in the end, I think we will all have a greater appreciation for the research process and hopefully we will figure out how to make the biggest impact with our research dollars.
I don't want to mislead anyone. I have a single goal. I want our dollars to fund important research. I want the trial we fund to mean something. It needs to answer important questions and hopefully also provide some substantial benefit. We don't have a lot of dollars to fund major trials like this so when we choose how to spend our money we must be very, very careful. For this reason we have been somewhat gun shy in picking our first major trial. However, I think we have found one that is very important and I am going to spend the next few days analyzing why and bringing all of the details to light. For many of you that know me you will be shocked when I mention what drug this trial will study but, if you stay with me, I can pretty much guarantee that you will see the importance of this trial to neuroblastoma.
Tomorrow we will begin. Now, this is purpose in action.
5:56 AM 6/1/2007
Okay, here we go. Drum roll please! The phase III trial that we are looking into funding is a single agent Fenretinide trial. The trial would be for children in their first or second remission during their maintenance period. Likely it would follow Accutane and include approximately six months of therapy. Most families that have children with neuroblastoma will be happy about adding another low dose option at the end of therapy. Nobody wants to stop when the risk of relapse is so high (50%+). Furthermore, other cancers, have found success in preventing relapse with the extension of this maintenance period of therapy. As I mentioned earlier, there are many issues related to Fenretinide and this trial. Some believe that it is ineffective because of its history in a relapse setting but I believe I will show you evidence that it could hold the most significant change in survival rates in about 15 years and, in fact, the phase I response data appears much better than similar drugs that are already considered standard therapy. Let's start by talking a little bit about Fenretinide. What is it?
Fenretinide (also called 4-HPR) is a substance being studied in the treatment and prevention of some types of cancer (breast, neuroblastoma, ovarian, etc.). It is a synthetic retinoid (a substance related to vitamin A) which induces apoptosis (programmed cell death) and non-apoptotic cell death in a variety of cancer cells. It is believed that it may cause ceramide (a wax-like substance) to build up in tumor cells and kill them. Derivatives of vitamin A (retinoids) can have major effects on cancer cells while not harming normal cells, so retinoids are ideal candidates for novel (new kinds of) cancer therapies. They have shown that fenretinide is effective against cell lines resistant to 13-cis-RA (Accutane) and they are currently studying the molecular mechanism of action for fenretinide. They discovered that a major mechanism of action of 4-HPR is increasing tumor cell ceramide and that ceramide modulators synergistically enhance the anti-tumor activity of 4-HPR against cancer cells but not normal cells.
So what have we learned? In short, Fenretinide is similar to Accutane but it works in some cells that are resistant to Accutane. It kills cancer cells by increasing a wax like substance inside the cell and it does not seem to kill normal cells.
Great and dandy! Another drug which "seems" to kill cancer cells. Well, there are a lot of those. Heck, in enough concentration, just about anything can kill cancer cells. How good is Fenretinide at doing it? Why this drug? And that is the subject of my next entry.
Now, I know that there are some of you that are here for Sydney, Graham, and Ainsley stories. I am sorry that I have to bore you with this. However, there are many families that are here to read about new and upcoming therapies and to understand the issues related to curing their kids. This is a perfect example to discuss many of these issues. Plus Lunch for Life dollars are our money to spend. We raised it with the help of all of these families and I want people to know that their hard earned dollars are going to good places and with careful forethought. Finally, it is also a point of discussion and to answer the question, "Is this the best way to spend our research dollars?"
This is the difference purpose makes.
5:37 AM 6/4/2007
Wow, I was overwhelmed by emails about Fenretinide. It really says something about how nerdy we are that this is one of the subjects that sparks the most debate. First, for those of you following the escapades of the hand-foot-mouth disease debacle. Well, just so you know, it is now a Sydney - Graham - Ainsley debacle. Sure enough, like clockwork, both Sydney and Ainsley began their blister journey on Friday. Ainsley is the worst of the two with blisters covering her tongue and the inside of the mouth, hands, feet, and hiney. Sydney is a close second however, her mouth was spared in comparison to her little sister. The good news is that all appear to be on the road to recovery. All of the blisters are starting to heal. They look like they have been through a war zone but all are ready to get back into the swing of things. Now, back to our previously scheduled programming.
When the idea of Fenretinide was first brought to us I was a bit gun shy. It certainly did not seem impressive in relapse populations but I know there had been some success with it. Unfortunately little was published and most of the information I have had to go on was anecdotal at best. I figured that Accutane was a good yardstick, a measure of success if you will. So, I began by researching the published materials on early Accutane studies to see if there was any comparison. Here, Accutane is the most recent addition to standard therapy, it is a retinoid, and was tested in fairly similar populations. How successful was it? Well, there really weren't any perfect comparisons. First off we are comparing phase 1 trials which are looking at dosing, not efficacy and dosing can have a huge impact on results. Secondly, they really did not use Accutane in relapsed populations. However, in the end, I think you can make an argument that Fenretinide looks better, at least on the surface. Accutane only had one published phase 1 study that focused on refractory patients. This was not even a relapsed population. Another problem was that the dosing was at 100 mg/m2 which is well below the standard dose now given of 160 mg/m2. However, with this study it was basically found that it did not have significant activity in children with advanced neuroblastoma. Of 28 patients only 2 showed a positive response, 3 stable disease, and 17 progression within a single month. This was quite different from the phase 1 study that was done in patients following bone marrow transplantation where 3 of 51 patients showed a complete response in the marrow.
Fenretinide has not been looked to in this way. As far as I know Fenretinide has only been tested in relapse populations. It is also important to note that it has also been tested in 3 formulations - a capsule, a powder (cookie dough), and IV. Original studies were done with the capsule formulation. There was one complete response and 13 patients with stable disease for 8 or more courses in 30 assessable neuroblastoma patients. In relapsed populations this is somewhat impressive but really isn't enough to send some one screaming down the halls. However, I continue to remind myself that this is a relapsed population and not one in an initial remission. The major limitation on this study was the amount of drug that had to be crammed down the kids daily. First, it took a lot of drug to achieve reasonable plasma levels and even they seemed to be all over the place. It clearly suffers from a wide interpatient variation in bioavailability when delivered orally in a corn oil capsule. Maybe this was the reason for the limited responses.
Researchers went back to the black board and came up with the "cookie dough", a powder, formulation. To support the hypothesis that a novel organized lipid matrix, LYM-X-SORB, can increase the oral bioavailability of fenretinide, fenretinide in LYM-X-SORB matrix and in a powderized LYM-X-SORB formulation was created. If mice were any indication, this formulation increased Fenretinide plasma levels up to 4-fold (P < 0.01) and increased tissue levels up to 7-fold (P < 0.01) compared with similar doses of Fenretinide delivered using capsule contents. Although the pediatric trial of this formulation is yet to be published I have heard that human experience was similar and anecdotally I am aware of several successes (responses and stable disease) so I would have to think that the data from this trial will be even better.
The final formulation of Fenretinide is by IV. Although this has not been tested in pediatrics yet there have been some significant responses in adult populations. This formulation appears to be much stronger but would not be used in first remission patients following Accutane. It is really designed for more extensive disease so, for the basis of this discussion, I will just act like it does not exist.
Regardless, if this phase 1 data shows us anything, I think we are able to show that Fenretinide is probably at least as effective as Accutane and likely even more so. This means a lot considering we know that Accutane has increased the 3 year survival by as little as 7% and as much as 28%. There have been some significant responses in much more difficult populations and its toxicity appears to be even less. There is even more reason to believe that these two drugs would compliment each other in the overall protocol, each working where the other sometimes fails. I can also make the argument that the extension of treatment may have a positive impact on survival. For all of these reasons, I think it is worth further discussion. Tomorrow we will address a little of this and then delve into the many hurdles that stand between this drugs and our kids. Remember, I began this by telling you that it was the politics that would be the hardest part of the course navigate.
Purpose is fun.
6:05 AM 6/05/2007
I actually spent a large part of my day debating the many issues related to Fenretinide. Every time I seem to discuss a new drug some conversation always turns to the secret ulterior motives of researchers and pharmaceutical companies. Everybody wants effective drugs now and are always looking to place blame when the most fruitful formulations aren't available this very minute. I have had several people write and "demand" us to fund a combination study of Fenretinide and ABT-751 because early evidence indicates that the combination will work better than Fenretinide alone. In reality that simply won't work right now for this population. The combination of these two drugs has never even been tried in kids before. We simply can't give it to every kid in remission until it has been tested and until we know what a safe dosing level of the 2 agents together is (this trial is already in the works by the way). They have finally received permission to go forth with a phase 1 combination study. This means that it will likely be at least two years before we know what a safe dosage might be. However, in the time being we could be offering a single agent (fenretinide) to our kids in remission with the hope that it will prevent a relapse. In fact, if early data tells us anything one has to at least believe in the possibility that it will do so better than Accutane. Additionally this gives us comparable data so that when the combination trial completes we will be able to open it in a phase 3 and compare the results to Fenretinide alone. In this sense we are killing 2 birds with one stone. This is one of the reasons that this trial, the Fenretinide trial, is so important now. We are treating kids now with an agent that is hopeful to increase overall survival while waiting for an even more powerful combination. The alternative is to do nothing now. We don't open a phase 3 trial and kids in remission don't have another drug and another opportunity to stay in remission for at least 2 more years. How does that benefit anybody? Wow, and I thought there were just politics on the medical side!
There are actually quite a bit of politics on the medical side. The first is with the Children's Oncology Group (COG). Bluntly, the COG is not interested in funding this trial because of patient competition. They are afraid that if they offer this option it will deter patients from another trial that they are trying to accrue patients for. The other trial is the ch14.48 antibody trial. This is the first antibody trial that Sydney participated in and, unfortunately, it is no where near closing. This antibody trial was originally provided as the second arm to A3793 (the first trial Sydney was ever on) and, although that trial has long since closed, this second arm portion has never accrued enough patients to close. For one reason or another, not enough people ever participated so it has continued to try and accrue patients from various other sources. If prior experience means anything and if you sit and do the math they are not expecting it to close until 2011. They don't want any other options to compete with this trial and slow it down anymore. I can understand them wanting to protect their trial but there are reasons people aren't participating in these trials. What do you do for all of the people that don't want to participate in this trial? Do we not offer them any alternatives? What do we do with 300 patients per year that don't want to participate in an antibody trial either because there hospital does not offer it or because they don't want to commit to 5 more hospital stays? To me it is a perfect opportunity to offer something different to a population where it just might make all of the difference in the world. On another note, I also think the competition is good. It is my belief that competition will only aid in creating new more attractive trials that offer more benefits to the patient population. So, as you can see, this is one major hurdle and the most important single reason (along with federal budget cuts) that the COG will not fund this trial. Should we just wait 4 more years? What should we tell those 1200 patients?
This issue raises many other problems. Like - How do we make this trial available to as many institutions as possible without COG participation? Since we don't have another trial feeding into this one (like A3793) what are the eligibility requirements? What protocols will we allow people to come in from? Will they be eligible if the had tandem transplants? Would those patients be comparable? Would the be eligible if they had MIBG plus a transplant? Would those patients be comparable? What type of conditioning regimen would they have? What type of transplant and with what agents would be required? Where would this trial be offered? Could we allow patients from other institutions to participate? Could we limit their travel if they were coming from another institution? Would they be eligible if they were eligible for the antibody trial? As you can see, at this point there are more questions than answers. This is just a glimpse into the many politics involved with just one issue on this trial. My question is: How do we make it available to the largest population in hopes to provide the greatest benefit without losing the scientific merit of the study?
Purpose is complicated.
Just as all of this Fenretinide stuff was getting more complicated and interesting we must take a day of rest from it. Today is a special day. Today is Sydney's 6th birthday. There really is no way to express in words the value of this milestone. I am so thankful for this gift. Each year is a blessing and now that we move further and further away from therapy it becomes easier to forget what an incredible gift we have been given. It is special days like this that we get to celebrate her life and how much she has achieved.
It is hard to believe how much she has grown. She is no longer my little baby girl and yet still not ready to be as big as she thinks she is. She is somewhere in the middle and the gift for me is that she is still raw, still sculpting her future. Although I am no longer "Daddy" and have some how turned into "Dad" I am still a very big part of who she is. I can still impact and influence who and what she will be. This is my reminder that it is not only my duty as a father but a gift that I have been given.
So six, huh?!? I wonder when boys start. I guess I should probably start working out. I want to be appropriately scary. I might even have to buy a fake shotgun and hang it in a gun rack in the back of the Suburban. Yep. with six comes a bunch of new responsibilities.
It's a brave new world for me but I promise to be a good Daddy for another year. I promise to appreciate you for everything that you are and I promise to work hard to help you be the best person you can possibly be. I love you, you are my inspiration. You have given me so many gifts and I only hope I can do the same for you. Happy 6th birthday and thank you for letting me be a part of it.
You are my purpose.
6:07 AM 6/7/2007
Good Morning! Well, I am happy to report that Sydney had a successful 6th birthday. She appeared to have a really terrific day and is still looking forward to her party this weekend. We Dungan's sure have a way of spreading these things out. Yesterday also marked the arrival of Mimi and Papa who came in from Alabama. The kids were ecstatic to see them with the exception of Ainsley who provided them with a mixed welcome. She still seems to be holding a grudge for them calling her a day late on her birthday. We will have to stay tuned to see what happens.
And with that update, that leaves us back with Fenretinide. A day of rest was a nice break to sit back and reflect. If email is any indication of the general feeling of parents' it is pretty clear that this is the type of trial that they would like to see funded. Although it is not the silver bullet I think it is pretty clear that it is probably one of the most hopeful agents for this initial treatment regimen. In fact, this is the only novel agent I am aware of that is even close to being considered to be introduced into upfront protocols. There has been discussion of tandem transplants and a pilot study introducing MIBG into an upfront protocol but the only other new approach other than those is an attempt by Texas Children's to use a new technique to reduce a the toxicity of upfront therapy without losing any of its efficacy. As you can see, Fenretinide is one of very few possibilities and new agents to alter upfront therapy and the only in this critical maintenance period.
I have received some emails asking us to instead fund some other trials. Others discussed included a phase 1 oncolytic virus study, a phase 1 combination of Bortezomib and Doxorubicin, and a phase 1 of Omega 3s and Sutent. To be honest, I don't know a lot about the preclinical work on many of these agents. To me they are all intriguing and questions that I would like to see the answers to. However, as far as making a large impact to as many children as possible and preventing as many relapses as possible right now, I still think Fenretinide is the leader. The timing is right to get it into kids and it will set up combinations in the future. In this sense we are starting a freight train of therapies into this maintenance period of upfront therapy and giving as many as possible, as early as possible, the best chance at achieving a long lasting and hopefully permanent remission. Again, I am not saying it will be the silver bullet but it could have a large impact - especially on children in first remission. The other options are interesting and I would like to see them funded as well. I will pledge to learn more about them and I will tell you this. If they are as promising as they have been made to sound I will join anyone in trying to fund them. Let's go raise the funds, a half million for three trials is quite a bargain.
Tomorrow I will get back into many of the politics of the Fenretinide trial. I honestly think the biggest hurdle will be in getting it into as many kids as possible. To me, these are the challenges. Choosing to get Fenretinide into kids seems to be a no brainer, actually getting the drug to them and getting them to be part of a trial that is not part of the COG will be the major hurdle.
Another day of purpose awaits.
4:33 AM 6/8/2007
I few days ago I alluded to many of the political problems related to bringing a Fenretinide trial to fruition. It is really easy to point the finger and try to place the blame for all of these challenges but I think it is extremely important to realize that there really aren't any bad guys out there. Everybody is fighting for what they believe is in the best interest of neuroblastoma and finding a cure. There is no absolute answer. By airing this in depth study of the birth of a trial perhaps we will all see what I have learned over the past months. It simply is not as easy as it seems.
I have said it several times but the biggest hurdle to the Fenretinide study is trial competition and politics. There are many vocal voices in the neuroblastoma world that do not want to see this trial become available right now. It isn't because their intentions are bad. They simply believe that if they open this trial no one will want to participate in the antibody study. If they don't complete the antibody study they will never have an answer to antibodies. They will never know whether they will work. Furthermore, if they don't complete it quickly they will run into data problems. In other words the data won't be comparable. Will children who begin this study in 2011 have had the same conditioning regimens, transplants, etc as those that participated in the trial 10 years earlier? Can we assess an impact on survival when the patients who participated in the trial all received different therapies? Unfortunately, probably not! When they finish this study will the results have any meaning at all? The study has already run long enough and there is much debate as to whether, if it were closed today, would the data be meaningful? The fact is that many believe that the antibody trial was written for the wrong reasons and that we will ultimately find out nothing from our efforts. It is a sad but true rumored "fact."
Regardless of what you believe about the antibody trial, many are fearful that if we had another option competing for patients it would probably slow down the antibody trial even further. It is this fear that is keeping many from wanting to open a Fenretinide trial. Is that wrong? After 7 years of collecting data and putting patients through a painful therapy shouldn't we find out whether it works? Should we just throw all of that in the trash? We can't give up now, can we? Don't we owe all children with neuroblastoma an answer? Are antibodies proven to work or not? How can we jeopardize the question?
Now, from the opposite perspective. With so few patients choosing to participate in the antibody trial and with so few hospitals and oncologists willing to put children on the antibody study (this is due to cost, expertise, philosophy, a bunch of totally reasonable reasons), what are we supposed to do with the remainder of the patients. Don't they at least deserve the opportunity? Don't they deserve a low dose chance at preventing relapse? Think about it. There are roughly 650 children diagnosed with neuroblastoma each year in the US. Half of those will be stage IV. That leaves about 325. At current rates about 40 of those will participate in the antibody study. Half of those will actually receive the antibody and the other half will be randomized to Accutane alone. That leaves 285 patients. Of those, probably 50 will receive antibody therapy at Sloan Kettering. That leaves 235 children. That is 235 children that aren't receiving anything more than standard therapy. Those are 235 children that could have another chance at life - or at least a choice? Remember at least 50% of those kids will relapse and most of those will die. We know that. Don't they deserve a chance?
Now before I get a bunch of email lets realize that part of those 235 patients will be receiving other therapies and be apart of other trials. Some will have tandem transplants. Some will have MIBG therapy. But, most will still be receiving relatively standard care and we know, by and large, we can do better. Don't these children deserve another option? Don't they deserve a chance?
You see. There are two sides. What if the ch14.18 antibody really does work and we stretch it out so far we are never able to reliably interpret the data with any degree of confidence. What if it cures 10% of kids but we are unable to prove it or it takes longer because of this Fenretinide trial. In this sense 100s of kids could be denied this beneficial therapy and all because of this Fenretinide trial. There just isn't a simple answer and this is the reason it becomes political. How do we still offer the Fenretinide trial without competing for patients? Theoretically, it can be done but it will be tricky. How do we do that?
Well, first off, we make rules. We make specific eligibility requirements that allow patients into the trial that would not be eligible for the other study. We can also make some rules that keep patients for participating in the Fenretinide study that have completed or have been randomized on the antibody study. We can also take patients who have no interest in the antibody study. Although, this begs the question, if the Fenretinide study was available would fewer people want to participate in the antibody study? Furthermore, we need to only allow patients with comparable preparatory regimens into the study. So we need to identify which protocols would be allowed. People with tandem transplants would have to be thrown out because the second transplant could effect their comparability. People with MIBG therapy would have to be thrown out as well. Oh, and people with allogenic transplants would need to be barred as well. Should we include people with total body irradiation? What about people that had different chemotherapy agents up front. Can they compete if they already had Topotecan? What about if they are participating on Texas Children's upcoming trial with the low dose chemo switch during the first two rounds? Which people get to participate and which do not? How complicated is this going to be? After all of this, do you know if you would be eligible? Would you want to be?
As you can see there are far more questions than answers and I haven't even touched the subject of where this might be offered. After all, if it is not a COG trial then how would your hospital participate. Would you have to travel? If you had to travel, how far and how often? How would people that could not afford to travel participate? Would that impact accrual? Would you be less likely to participate? Sure! But yet, there I go again. More questions than answers.
The point is that it isn't easy. There is no clear and right answer. In the end we will end up with a Fenretinide trial. In two years someone will be reading through the protocol and wondering why it has all of these strange requirements and they will undoubtedly think it was a conspiracy or some nutty researcher with too much time on his hands. I can't tell you how many times I have heard comments like that. Regardless, if you take anything from these conversations please realize that people are working and thinking really hard to cure neuroblastoma for all of our children. The trick is that it becomes our job to figure out what is bet in our individual child's interest. I just want us to at least have some options.
I am sorry I don't have more answers today.
I do have plenty of purpose, however.
5:43 AM 6/11/2007
Good Morning! Well, I am happy to report that I survived a 6 year old birthday party. That is no small feat. I have to admit though, I came out pretty sore and with a shiny new raspberry on my left knee. Sydney's birthday party was at a place called "Pump it Up" which includes a treasure trove of large inflated slides, bouncy houses, and obstacle courses. At first, I thought it was just fun for the kids but I quickly found out it was fun for the adults as well. All of the kids had a blast and even Ainsley was eager to try all of the rides. In fact, she was probably the most fearless. Sydney was in perfect bliss. She was surrounded by her two favorite boys. Truman made another appearance and her newest heartthrob, Nathan, also came to celebrate. She spent two hours flirting and playing. In the end, I think we successfully wore out all of the kids. The adults on the other hand are still recovering. Although I may be tired I am proud to report that I has able to beat a six year old in a race through one of the obstacle courses. Yep, I still got it. I just hope they don't want a rematch next year. At this rate I don't even know whether I will be finished from being sore by then.
Later that night after dinner, Kip and I went to the Texas Motor Speedway to watch an Indy car race. This was my first experience at such an event. I was blown away. To this moment I am still blown away by the incredible speed at which these cars drive. I just don't understand how they keep it in control while racing other cars at 215 MPH. It was complete chaos. I was also amazed by the sound of the cars. I don't think I have ever witnessed something so loud. At first, as the cars were started I thought everyone with ear plugs just didn't have the fortitude to be real race car fans. However, by the time the cars got up to speed, I was stuffing those ear plugs in just as fast as I could. I have never been a very big racing fan but I must admit this was an incredible experience and one everyone should witness at least once in their lives. It was a nice cap to an already fun day.
Sunday was spent lounging around the pool. The kids spent hours swimming and I had the chance to just sit back and watch them have some fun. All in all it was a great weekend.
I am well rested and ready for another week at the business of purpose.
4:51 AM 6/12/2007
Good Morning! Please bear with me. I am still trying to get the cobwebs out this morning. The last day absolutely flew by and I am already into an hour of a new day and I feel like I have gotten absolutely nothing accomplished. Yesterday found all of the kids back into school and into what is becoming their ordinary summer routine. Ainsley has just about completed the transition into schoolhooddom. She still has a little trouble when we leave in the morning and pines away in the afternoons for her Daddy but she appears to take it in stride. I must admit. It feels wonderful to see that smiling face and her the word "Daddy" uttered from her lips in excitement when I pick her up. There is nothing better in the world than that feeling.
Graham's new class is a bit different than his last. Because of where is birthday falls he was moved forward while half of his class was moved back. Thankfully his best friend Beckett has moved with him. Unfortunately, however, the love of his life, Aidan, is still in his old class. It is really cute. Most days he will still stop by his old classroom to see if she is there and to say hello. Late last week they saw each other on the playground. Like his father he decided to play it cool. When Aidan did not notice he decided to jump up and down like and idiot and make strange noises. It reminded me of some sort of African chicken dance. Yep, that got her attention. Women are clearly like putty in his hands. I guess he got that from his Dad. Wow, watching my son follow in my footsteps, it is a wonder that anyone ever married me. Graham you are the most loving and caring child in the world but, unfortunately, you were also gifted with a touch of your dad's dorkiness.
Sydney is doing well. She is ecstatic that Graham and she are both in the same school. She spends most of her time on the playground with him and she could not be happier. Although they are almost 3 years apart they are best friends and have an absolute blast together. Sydney is active and gives every appearance of being an average 6 year old little girl. The only noticeable difference is that fact that she is completely covered in bruises and bug bites. Honestly, it looks like we just picked her up from being stranded on a tropical island. I don't know what she does to herself but she is literally covered. in scrapes, bruises and bug bites. Her skin is so fair that they show even brighter and seem to take longer to completely resolve. No matter, she is ready for the next challenge and seems to have taken this summer transition in stride.
Well, I had best be off. I know I have an incredibly busy day before me. I just hope the sense of accomplishment is a bit greater than the day before.
5:31 AM 6/13/2007
This update comes to you from a dead laptop. I only have moments to write before it has another complete meltdown and shuts off so this will be brief. Other than the death of my laptop, yesterday was a great day. Sydney had her day in the sun with Mimi and Papa. She spent the day with them enjoying her opportunity for some good old one on one attention. They took her to breakfast and the beauty shop where she had her nails done. They then took her to Van Grow, an art studio for kids. They had lunch and continued to play and even enjoyed an afternoon in the pool. She is now undoubtedly completely spoiled to the core and I am quite sure that it will take weeks to get her whipped back into shape. Today will be Graham's turn to ride the Mimi and Papa train to spoiled rottenness and I am quite sure that he will receive his fill as well.
This morning I will be taking Sydney to see Dr. Debbie. All of the recent swimming appears to have left her with a bout of swimmer's ear. I am quite sure that a little look-see and a prescription for some drops will put her ear back onto the road to recovery. This will be followed by a trip back to school and an opportunity for me to sit and wait for Dell to arrive to replace the motherboard on my computer. I guess I will have a busy day of stuffing Lunch for Life bags and planning our upcoming golf tournament.
Not very exciting but, hey, it is purpose.
5:17 AM 6/14/2007
Good morning! I am happy to report that my laptop is now back in the land of the living. Unfortunately this will be another short update. I am about to hop into the car and drive to Houston for a Neuroblastoma Parents' Group Meeting. It will be a long 8 hours of driving for just a short one hour meeting but I am looking forward to meeting some other families and to learn more about what is needed to support the Neuroblastoma program at TXCCC.
It turns out that Sydney does in fact have swimmer's ear. After a quick look into her ear we were ushered out with a prescirption and a handful of pharmacuetical goodies. I am happy to report that Sydney is already on the road to recovery.
Well I am off. It will be a long day of driving
6:16 AM 6/15/2007
I am happy to report that I am back from my world tour of Houston. I was surprised that the 8 hour drive there and back was not more irritating. I guess I am just becoming softer (in more ways than one) in my old age. It was a great experience and I had an opportunity to meet several new parents. Some of the parents were relatively new to the world of NB. A family that I spoke with was just two months into their journey. That "look" was etched into their faces but I was just glad to see them on the way out of that initial period of horror. It was nice to talk to a family whose child was so similar to Sydney and then to tell them our story. Although it has been a long road, there are not many longer term survivors of stage IV neuroblastoma that also have N-MYC amplification. I remember the difficulty that I had in finding others when Sydney was originally diagnosed. There is a sense of relief when you meet with someone that has a child similar to your own that is surviving and experiencing a normal childhood. It is hope. I am hopeful that I gave them some.
The bulk of the meeting was about fundraising for Texas Children's Cancer Center. It was a little odd for me to be there. After all this was about an institution raising money for itself but I wanted to show support from the Children's Neuroblastoma Cancer Foundation for Heidi Russell's work and to see if I could find away to help them fund it. She is doing some important things and with few relationships in the area it can be difficult at times to organize events. I would love to say that I knew everything that was said. Most of which resonated with me but there were some new items that I was no aware of. I am interested in hearing new ideas and, most importantly, it always seems to get the cobwebs cleared and get my thinking hat running in good order. I came away from this experience with lots of ideas on how I could improve.
It was a shot in the arm of purpose.
6:05 AM 6/18/2007
Good Morning! I survived father's day! The family had a great weekend at home. The bulk of our time was spent inside as the rain continuously came down. The good news for Lynley was that she had us cornered. The bad news for us was that we had no where to run. This culminated of hours of work in the slat mines for all of us. The end result was a completed bedroom for Graham and an almost completed bedroom for the girls. We repaired cracks and nail holes in the wall and even retextured in areas. I must admit. It does look pretty good.
The kiddos had a pretty good weekend as well. Although their days were not filled with hours out in the swimming pool or in the backyard the seemed to find their niches inside. Sydney even helped us to paint. Unfortunately, the hard wood floors weren't really in as much need for a good coat of paint as she had envisioned. None the less, we had a pretty good time around the house.
As usual, this week will be pretty jam packed. I am expecting to hit the ground running with only brief stops to change my tires and refill with gas. I have several major projects all coming due at the same time. There is much to be done. For that reason, I must run.
Purpose is thick in the air.
5:43 AM 6/19/2007
This week was just as busy as I had imagined, maybe even more so. This is a busy time of year. First off, we are just two weeks before the CNCF's Neuroblastoma Conference in Chicago. For those of you who may not remember this conference has been a huge part of our lives and a significant influence on our ability to cope. It was just a week after Sydney was diagnosed in 2003 that Monty flew to Chicago for this conference. He knew that we could not attend on our own and stepped up to the plate for our family. He was our eyes and ears. Monty came back with mountains of notes and contacts. Most importantly he brought us confidence in our plan and contacts throughout the neuroblastoma community. It was this experience that eventually led me to start Lunch for Life and fund the great work that Pat Tallungan and her family were doing at the time. Eventually I would become much more involved in the foundation but this was the seed that started it all.
This conference is unique and very different than most of the others that I attend. First, this one is for parents and children. Travel costs are paid for many and almost all have the lodging paid for by the foundation. The entire purpose of this conference it to bring in neuroblastoma experts from across the world and have them talk to the parents. In other words, me, some father who has a child with neuroblastoma, who has never met another person with neuroblastoma or spoken to someone who studies the disease first hand, can do that very thing. You can literally talk to the people that wrote the books on neuroblastoma. One of the great things is that all of the oncologists and researchers really make an effort to put all of these materials in terms that parents can understand. This way everyone walks away from the conference understanding what options and choices they have and what research supports their conclusions. I know of no other disease that has a group that provides this service.
Another great thing to come out of the conference is the friendships to other families. Neuroblastoma is just rare enough that you don't generally meet people with neuroblastoma everyday. Heck, keep in mind that most of us never even heard about it before Sydney was diagnosed. The opportunity to meet other people that have followed the same path is truly meaningful. I have forged some of the strongest friendships of my life at this event. There is simply nothing like it. There is an almost immediate bond. It goes deeper than friendship. There is an almost immediate kinship. From the minute your eyes meet there is someone facing you that knows exactly how you feel. It is that powerful.
I know the conference has filled up quickly. At this point, I don't even think there are any rooms left but if you are interested in going please feel free to contact me. I can probably scrounge up a room or two but please let me know quickly. It starts in less than two weeks. I promise, this is a trip that you will never forget.
It is purpose - compounded.
6:35 AM 6/20/2007
Good morning! I am running a bit late this morning. I overslept which is secretly a good thing and I have a mountain of email. Everybody is doing really well. The weather had cleared up for a change and we actually spent the evening in the pool. Sydney is earning her transition into fishdom one scale at a time. The minute I bring home the kids from school the race out to the laundry room to put on their suits. By the time, I get back down stairs in my kid proof outfit they are all ready and raring to go. Sydney is the first in and always a challenge to get back out. Even thought the pool is still cold from the rains Sydney would just assume to stay in permanently. The other kids tire within an our. It usually isn't a problem to convince Ainsley and Graham to get out. They do not have a high tolerance for the cool water. They shake and shudder as their teeth chatter and their lips turn blue until they simply can't take any more. Sydney, however, chooses to stay in. Somehow she has developed a thicker skin than the others and seems undaunted by the cold. It does not phase her a bit and she just keeps swimming along. It is by far her favorite activity in the world. Even at the announcement of dinner she still fights to stay in. She hasn't grown gills yet but I would not put it past her. She loves it just that much and she just might figure out how to do it.
Well, I best be off. Purpose awaits.
5:22 AM 6/21/2007
Today has become the most important date in our lives. It stirs more emotion and thought than any other milestone. Lynley and I think more about this date than we do birthdays, anniversaries, or holidays. It has become a date that defines us. It isn't by choice but by circumstance. This is the day in 2003 that we stepped into the world of neuroblastoma and it has become the marker that all else is judged by. For us it is very much like the switch from BC to AD. It is a date that marks remarkable change and its impact is complete. For both good and bad this is the moment that defines our lives. How strange.
I have often thought that perhaps we should be looking at another date. How about the day that she first achieved remission or the day that we completed therapy? Those are happy days. Why don't we look at those with such strong emotion? Our lives surely "changed" for the better then. I think part of the reason is that those dates are not complete without the first. Remission and the end of treatment really have no meaning without the diagnosis.
Sydney's diagnosis date marks the day in our lives where everything changed - priorities, relationships - heck - thought itself. Sydney did not only get cancer on this date. It was also a rebirth of all of us. I am no longer the person I was the day before her diagnosis. I am forever altered by that moment in time. Oddly enough, I am also happier.
Don't get me wrong. I still hate neuroblastoma. I hate that Elesha are Paul are at home on hospice. I hate that there are still so many children fighting the battle. I hate that before that date I knew not a single child who had died and yet in the last 4 years I have grown to know hundreds. I know more angel children than I do living ones. Yes, I hate this disease. I hate it more than the day we stepped into its world.
This is the date that we live by. It is our moment. It is our birth of purpose.
5:33 AM 6/22/2007
All of this talk about anniversaries got Lynley and I talking. What's next? This is about as long as we have ever gone without some kind of treatment for Sydney. I have been really hopeful that Sloan would have finished the manufacture of the QS-21 for their vaccine by now. Yet, another 3 months has gone by again and I am sure that we are probably at least another 3 months away by now. Nothing is ever fast enough when your child could potentially benefit from it now. In the grand scheme of things that is about the only thing that she would qualify for. Right now there simply aren't any other options but to sit and wait and this is what has brought Lynley and I to such a quandary.
Lynley and I are both very aware of Sydney's uniqueness. We still can't put a finger on her relapse. Was it or wasn't it? Regardless of what we believe we still have to factor in the relapse and if you do that the game changes dramatically. In this scenario, although it is theoretically possible that she achieved cure, it would be highly likely that we were just dealing with time to progression. If that is indeed the case then another low dose weapon is needed. We need something to stay in the winning column.
Many may think I am nuts but I have to operate on what I know. If, for one minute, you assume that she relapsed, how many relapsed stage IV neuroblastoma patients with N-MYC amplification do you know that achieved cure? How many do you know that survived more than 4 years? How many do you know that ultimately kept a remission? Now, I don't know all of the neuroblastoma patients but I do know many and I don't know of any that fit those scenarios outside of Sydney. I don't say that to depress, but I do say that to put this into perspective. For Sydney, relapse is bad just like it is for any other child with neuroblastoma, but, it is her N-MYC amplification (biologic characteristic) that really leaves us with a bad taste in our mouths. I guess the best way to put it is that I have seen many survive relapse and go one to achieve long term remissions. I have seen children with N-MYC amplification go on to achieve long term remissions and possible cures. What I have not seen is the combination and that is what scares me and weighs heavily on my mind.
So, that is the reason that Lynley and I are brainstorming. Now, Sydney is technically on a therapy. I continue to give her Singular and I do believe the drug will eventually prove to provide some benefit. What I don't know is whether a dose of 10mg per day is enough. If you do the math from what worked in mice you would have to assume that it would take as much as 100mg per day or more to work. I simply would not give that to Sydney without more safety data. Although I have seen some smaller adult trials that gave as much as 300mg per day safely we simply have not done that with children (that is why a phase 1 is needed) However, in a state of no evidence of disease it just may be enough to shut down a survival pathway for a few lone nb cells.
Now, the idea that Lynley and I have come up with is for another round of Accutane. In the absence of anything else I think it is probably our best bet. It is relatively non toxic in the grand scheme of things and we know for a fact that retinoids have the ability to mature nb cells. Heck, if you buy into neuroblastoma cancer stem cell theory it is retinoids that are used to differentiate these "stem cells" to the good form instead of the bad. Perhaps, we could come up with a dosing regimen that would work for her. I was thinking something like 14 days on/42 days off for a year or until something better came along. I really don't even know whether that is a good idea from a dosing perspective but at least on the surface it seems to meet the requirements of dosing, extending the treatment cycle, and would meet a time to progression curve. Perhaps this will give us time to get other options on the table - like another vaccine.
So, how serious am I. Well, this is an idea. We have come up with it and now I have to study it and see if it will work or if it is just making us (the parents) feel better. Thankfully, I know a lot of people to talk to and I will have a perfect opportunity to discuss it in Chicago. I can think of about 3 or 4 people to run it by. I have a feeling there will be a few noses stuck up at the idea but I have a suspicion that some might just tell me to do it anyway. We shall see.
Wow, purpose in the mind of a madman.
5:18 AM 6/25/2007
Elesha has earned her angel wings. My heart just breaks for her family. I first met them at Cook's at about the same time that Sydney began her treatment of 3F8 at MSKCC. I remember meeting with them in the playroom. It was early in their journey and I recall trying to instill a little hope, knowing what a long journey that they had before them. They were such a nice family. Elesha'a little sister had just been born not too long before. Ainsley was still in Lynley's belly but I remember how similar they seemed. As I look back it just doesn't seem like it could have happened. It just never gets easier hearing their words. Here are a few from Elesha's dad during their last night together.
"Last night she struggled with her breathing in pain crying out in mostly incoherent speech. She was hemorrhaging inside and spitting up lots of blood. We cried and prayed. Sometime after 2:00 AM she cried out “I want to go home!” Around 3:00 AM I went down stares to cry out to God alone and asked him to come heal her in this house or do so in his house. I prayed for rest.
I went upstairs to find her lying on her back, still breathing hard but much calmer. I lay down beside her on my belly and she threw her left leg over the small of my back. This is a position she has always found comfortable. She then drifted off into a deep sleep and so did Karen and I. I awoke at 6:00 AM with her leg still resting on my back, but she was gone. Jesus stood by our bed last night and took her into his loving arms. "
I would love to be able to say something meaningful but my heart is at a complete loss for words. I hate this disease. And, I especially hate seeing it take another angel. Elesha was in a tremendous amount of pain and I am glad to see her finally relieved of that burden. I know that now she is out of pain and probably chasing butterflies around heaven. Even with that beautiful thought it is still gut wrenching. It is not fair - not to her or her family. I am so sorry.
Some days purpose hardly seems enough.
5:45 AM 6/26/2007
I woke up this morning to find Sydney in my bed. Believe it or not that is enough to shoot my blood pressure way up. This is one of those things that sends terror shooting through your body. As a general rule, the kids sleep in their beds and we sleep in our own. We feel that this is best for everybody and in this way everyone gets the best sleep possible. It is only under " emergency" conditions that we normally sleep together.
For example, when Sydney or one of the kids is sick and throwing up we will invite them into our bed so that we can help them through the night. When Sydney was neutropenic and had temperature fluctuations we would put her in bed so that we could keep tabs on her temperature. I can't tell you how many times we left in the middle of the night to go to the hospital because of a neutropenic fever.
We also keep the kids in our bed whenever they are in pain. It seems like a simple excuse but this is the most common reason. I don't know that it really solves anything physical. Sometimes we can rub the spot and make it feel better but more often than not our reasoning for bringing them to our bed is mental. They feel better because Mommy and Daddy are taking care of them. We feel better because we are close enough to assess where the pain is, how long it lasts, and if it recurs. Then Lynley and I generally get to spend the night wide awake wondering what the source could be and ALWAYS fearing the dreaded neuroblastoma.
The worry only intensifies in the hours and days that follow but seems to decline as more time goes by without further occurrences. Our quarterly scans are the final assurance that gives us weeks to live a carefree lifestyle again before the next worry and fear resurfaces.
Pain is a scary thing in our house and the fear of it and the fear of reentering back into the treatment world is terrifying. So much so, that when I wake to find Sydney in my bed my heart skips a beat. Terror. Worry.
Once I discovered her I made my way down stairs as quickly as possible. What was going on? I had to find Lynley. Is she in the bathroom? Outside on the porch? Where? With each second that passes the fear becomes worse. Impending doom. Rage. Panic. It races through me.
Ah, there she is!
"Why is Sydney in our bed?!?"
"Oh, she had a bad dream." Lynley quickly responded.
"Oh, I am so happy, thank you", I flitted.
Nothing more needed to be said. Lynley knew exactly what I was talking about.
That was the start to my morning. It is less often but it is always there. I am thankful for another day and in a strange way humbled by its power to control me.
Some days I wonder how much I have purpose or whether it just has me.
6:11 AM 6/27/2007
I am happy to report that I woke up with no one in our bed this morning. I must say it is pretty nice not to wake up in terror. It is also nice because I am trying to get us much good sleep as possible. Tomorrow I leave for Chicago and the Children's Neuroblastoma Cancer Foundations 5th Annual Parent's Neuroblastoma Conference. There I know I will be talking to other parents and researchers until the wee hours of the morning and sleep will be hard to come by. I have so many people that I need and want to talk to and somehow I know that there just won't be enough time during the waking hours, so sleep will be the casualty of my visit.
Over the last week I have kept somewhat tight lipped regarding a presentation by Dr. Cheung from Sloan Kettering. He is the mastermind behind the 3F8 and he took the opportunity last Wednesday night to meet with the parents at the Ronald in New York. Although I obviously did not attend I received several emails from many who attended to see if I would be interested in becoming involved. Although I will not go into the details because I was not present I can tell you about some of the highlights. Hopefully in the next few days I will have some officially reviewed notes from the meeting and can be more forthcoming but for now I do have some highlights.
First, there was a basic discussion about 3F8 and the treatment of neuroblastoma. I have heard this discussion before. It is an overview of what they know about neuroblastoma and what their perspective and track history is. The interesting thing to come out of this discussion was regarding the affinity of certain people to 3F8. They have been able to stratify their patients into 3 groups. Some of these groups had a survival rate as high as 70%. Wouldn't it be nice to know where our child fit in. I think everyone had that same feeling. Regardless it is an interesting finding and if we can find ways to engineer increased affinity for these other groups it could significantly impact survival for many. So, the first thought is that we have a way to estimate how well 3F8 will work and this gives us insight on how to improve the antibody.
Secondly, they discussed the 8H9 antibody. This is an antibody used in central nervous system relapses at Sloan Kettering and oddly enough medulloblastoma. I discussed this a year ago in relation to the incredible successes that they were having with their CNS relapse protocols. Well, it turns out that these kids are continuing to do well and they are beginning to investigate whether it is the 8H9 that is actually causing the effect. They don't have the answers but Dr. Cheung discussed what they knew and where the research was going.
Finally, and perhaps the reason I was contacted to participate, there was a discussion about creating a humanized form of the 3F8. This is a very complicated subject that I will no doubtedly go into when I get back from the conference but one that could have a significant impact on neuroblastoma. One of the failures (and successes) of 3F8 is its ability to create an antibody response in humans that actually kills the 3F8 antibody before it can do any good. Most patients eventually develop this antibody (HAMA). Oddly enough, not Sydney. Regardless, this could be very meaningful for a good majority of patients and would mean that the antibody would not require large doses of chemotherapy to suppress the immune system. Like I said, it is complicated but its impact could be far reaching. The long and the short of this is that there are many parents excited about the possibility of this development. At a cost of 2 million dollars though it would be up to us to raise the research dollars. The long and the short of this is that they have put together a committee to investigate the possibility of raising funds for this project and we will be meeting with Dr. Cheung this evening. Honestly, I do not know what will come of this but, at the very least, it is a very interesting idea. I will report as I learn more.
Purpose, purpose everywhere.
6:16 AM 7/2/2007
Hold on, let's back up a minute. This entry actually started yesterday.
Well, here I sit on a plane in Lubbock, Texas of all places. It seems some thunderstorms have sent us on a little adventure. Although I miss Lynley and the kids this is okay, too. I needed the time to decompress. The last 4 days have been incredible and I really don't even know where to begin. It was one of the most meaningful experiences thus far in our journey. It was also a bit different this time. Okay, it was a lot different. But, the difference was more with me than with anything else. Now, when I go to these conferences it is far less about learning new things about neuroblastoma and far more about seeing old friends and meeting a few new ones. Neuroblastoma sure seems to bring together a group of incredible people.
I don't want to mislead. The conference was jam packed with information. In fact, I had some concerns that the information might be too technical. I thought we may have gone over the top but it did not take too many interviews before I realized that it was an appropriate level for most. I can tell you that the questions were far more sophisticated and I was extremely happy to see some issues finally come to light. One of my favorite presentations was Dr. Reynolds examination on "How to interpret data?" I must admit that I learned quite a bit and with his information I will be far more qualified to analyze data from various research projects with much more conference in the future. He shed light on some of the problems in the research world. Most importantly, I have learned how to discern the difference between data that is qualitative and meaningful and that which needs to be scrutinized more carefully. Personally, it was my favorite presentation but, keep in mind, I had already seen most of the others at another time and place.
In going into this conference we really made an effort to ensure parents received an unbiased view of all of their options. The trick was that we needed to bring the issues to light without being antagonistic. There were several of us that kept a pretty steady flow of questions to ensure that we could bring to light as many of these issues as possible. There aren't absolute answers to 90% of the issues that we discuss in neuroblastoma. However, to be effective advocates for our children we need to be aware of both sides of the decisions that lie before us. I can't tell you how many times I am asked if I think whether course of action "a" or "b" would be better for a child. I always answer with "Which side do you want me to be on because I can argue either side?" There aren't any absolute answers but, in the same sense, if you know the facts, there often aren't any wrong ones either.
I spent hours discussing many issues outside of the confines of the conference hall doors (Yes, it appears there may have been a bar close by) and it was in these discussions that I really learned the most. I spent hours talking to many of the researchers. While at a neuroblastoma conference, I generally don't talk to the researchers about Sydney other than to say that she is fine, when the ask. At most of the conferences that I attend this type of discussion would always be inappropriate. However, at this conference, the parents' conference, it is fair game. At about 2:00 AM on Thursday night I found myself in a deep discussion with Dr. Reynolds about Sydney and what I envisioned for her future. He gave me the opportunity to lay out my arguments and to reveal my plan of action. We discussed the various benefits and risks involved. We discussed many issues but, ultimately, I wanted his opinion as to whether my plan was reasonable. Did it make sense? Was this what he would consider for his child? Like me, he had some perfect world preferences (my plan A) but we both had to operate in the world in which we live. And so, plan B, the one I discussed last week in my diary was put into motion. I can't say that my decision is right for any other child but I can say with some level of assurance that it is reasonable for Sydney and, most likely, in her best interest.
It appears that I could make a pretty good case to put Sydney on a modified schedule of Accutane. I was glad to hear that Dr. Reynolds felt that my schedule of 14 days on/42 days (or more) off would accomplish what I wanted. Additionally, the reasoning behind my dosing schedule and my argument for a retinoid "tune-up" holds water. This is not a long term decision for Sydney but an acceptable option until plan A becomes available. I could have argued for plan A right now. I could beg and plead and whine for plan A but I honestly believe that doing plan B first may, in effect, enhance plan A.
It is fun to be cryptic.
Well, I am finally back up in the air and on my way back home and judging from the dark clouds before us it is time to get ready to land.
My purpii await.
7:58 AM 7/3/2007
This is just a quick update to let everyone know that we are okay. Graham came home from school with a 103.4 degree fever yesterday morning and it has been chaos ever since. Thankfully the doctor thinks we are just battling something viral. He seems to be okay. In fact, today he is at home with me and happily playing and watching television. He seems perfectly fine and then we will be surprised by some diarrhea or another fever. I am hoping he will just rest and allow his body to recover.
There is still a mountain of things to discuss regarding the last couple of weeks but I find myself running again this morning. Perhaps, tomorrow.
For now, there is purpose.