Monday, June 30, 2008
After dinner our raucous bunch made our way up to the hospital where we found Hayden and much of his family. The magic tricks were a hit and I think Hayden will have a great time impressing his friends, nurses, and doctors. The kids had fun while we adults sat and chatted about all that is neuroblastoma. I don't usually get to talk to families this close to diagnosis. It just never seems to work out that way and families always seem to need a little space to make the adjustment. However, it is quite a privilege to be with them as they go through those first weeks and months. Through this experience I have relived so many of my early thoughts of diagnosis. I had even forgotten some of the darker more fearful thoughts that never even made their way to my diary. Things that even I, with all of this experience, fear to write about to this day. It is a terrifying time that only another parent of a child with cancer would understand. I hope that in some way I have helped and comforted them. I pray that I am making this easier for their family.
Hayden looked great!
Saturday marked the funeral for Alexa Aigner. You might think it strange for me to say that I had such an incredible weekend when I attended such a sad event. I think so to. However, let me explain. This funeral was perhaps the saddest I have ever been to. Unfortunately, I now have experience to compare. While I take something special from every funeral I attend this one truly inspired my faith. First, Crys (mom) did an incredible job of reliving Alexa's life through words. I felt so close to her and I felt like I knew her better than I ever had before. Perhaps, Crys' incredible story telling and the realization that she was gone was why it was so unbelievably sad. Regardless, I truly felt like Alexa was at peace and I could picture her in Heaven in my mind. There was a sense of relief and joy in her memory that just made me feel like she was there. As with all of these kiddos, she touched me deeply. I know I have said it before but it was sooo sad but I left knowing that she was truly at peace. The thought of Alexa's complete unearthly joy in Heaven bathed me in comfort for the rest of the weekend.
And that was a good thing to! Lynley had plans for me and for the next 24 hours she would have me gutting and installing our new french patio doors with Dr. Bob. I don't know what it is but there is something so rewarding about milling around and banging hammers with a good friend. Bob and I had a great time ensuring that every detail of the door installation went according to plan. You may not know this but I have an old and crooked house. It is not easy fitting a square door into a rough opening which is more parallelogram than square. Regardless, by 8:00 PM we had a set of doors in place and a couple of beers in our belly. Times were good.
Sunday was much of the same. It started with laundry and dishes and then quickly progressed to more banging of hammers as we finished trimming the outside of the door. It was therapeutic. I grunted.
At 4:30 PM Chance, Truman, and Preston appeared at the door for an evening out at the Rangers game. It was just us boys. There were hot dogs, peanuts and nachos for all. For the kiddos there were also icees and cotton candy. For chance and I, another gulp of that frosty golden beverage. I grunted again.
In a nutshell, that was my weekend. A little strange. Perhaps not what was expected.
But, for me, it was purpose.
Friday, June 27, 2008
What I don't get and I can't digest is a child like Alexa. While she was not clear of disease, she was completely and utterly vibrant. Looking at her you would have had no idea of her journey, her history, or her disease. She had been through it all - high dose chemo, radiation, a nuclear reactor full of MIBG, and a slew of phase 1 trial experience. Most recently she had spent a year on ABT-751 (the next drug for me to talk about in my article.) The point being that she was on a fairly mild therapy and one with little toxicity. She had full rosy cheeks and a head full of lovely locks. In a sense she was about as healthy as you could be with refractory disease. Her immune system was in tact. She was full of life and feist.
So, what I don't get is: how is this child taken in such a short period of time and in such a way. Like I said - I understand disease related loss. I get loss from the toxicities of therapy. What I don't get is something like this. After she has been through so much, how do we lose her to an unknown bug and pneumonia. It seems like such a slap in the face. She deserved so much more.
I understand finding a cure. I understand reducing the intensity of therapy.
What do I do for Alexa?
I have purpose just not answers.
Thursday, June 26, 2008
When I was little I dreamed about all the things I wanted to be when I grew up. I was sure I was going to be famous. I was going to sing on Broadway and light up the big screen in movies. I was going to be something the world would know and love. Now that I am grown and look back, I wish I would have known that all my dreams would come true by just being the mother of an incredible darling girl named Alexa. Alexa. My first child, my only daughter, my little pal and my heart's desire. I love you.
On Saturday when Alexa crashed for the first time, Zack and I had an extremely mournful experience. We were in shock and we were in pain and anguish for our girl. Zack went and stood by her and touched her arm. I gathered the strength to stand beside him and touch her leg and the love and peace we felt immediately calmed our fears and extinguished our pain. She was there telling us she was okay and comforting our hearts.
We knew then that she was going to go. We tried to ignore it but we knew it was coming. Yesterday when she was taking so long to recover from each suctioning we got scared. Late in the night and early this morning we both knew it was coming. Zack stared at her and stood by her side. I was overwhelmed by the urge to sleep and forget. She wasn't sick in my dreams. I slept in until 9:30 trying to ignore what was going on.
I woke up, didn't talk to anyone, kissed my girl, got dressed and stood by her bedside knowing what would come today. It was confirmed when the doctors called us into rounds and explained what they thought would be best to do for her. We agreed and went back to her room to spend time with her.
The staff closed our door and let Zack and I take a moment with her. We talked to her and told her things and read her book to her that I wrote so long ago for this very occasion. It brought a major sense of peace to both of us, especially Zack. He told me later that it was ironic that I had written that for her and for others but it turned out to help us the most. We told her to do what Jesus was telling her and that she could go and it would be okay, that we would take care of brother.
The staff crowded in and Zack and I sat on the couch ready. We did not cry. We sat there ready for our girl to tell us when it was time. She fought valiantly and tried to go, but the nurses, machines and drugs were working furiously to make her little body keep working. Finally it was time and without speaking to one another Zack and I got up at the same moment and went to her blue little body and told her to just go. The staff backed away and told us they were basically doing CPR at that time with machines. We knew she was tired. We knew it was over. What happened next was truly one of the best experiences we'll remember always.
The staff offered to let us hold her. They all worked silently and quickly to move the bed out from under her. I pulled up a rocking chair under her and they gently laid her body in my arms as Zack embraced us both. She was still shaking from the oscillator so I asked that it be clamped off. She was finally at rest. We held her for just a few moments longer and I happened to look at the clock. It was 11:20. I turned back to her, closed my eyes and laid my hand on her heart and moments later the doctor told us she was gone.
We held strong until she left and then our mourning began. Dr. Niece and other hospital staff came to love on her, family members held her. The staff was extremely gracious to us, allowing all the time we wanted. I held her and rocked her for about 5 hours before we placed her in bed for the last time.
Zack and I are at home together. We look forward to seeing our son come back home tomorrow. We will be surrounded by family and friends. As soon as we get a date and time for the service I will post it.
All we need now is prayers and time.
Some days purpose just doesn't seem like enough.
Wednesday, June 25, 2008
Lynley's children acted like horrible little spoiled brats yesterday.
I am not sure what happened. I don't think there was anything in the water. They all slept well. They ate all of their meals. And, of course, we have already completely ruled out any possibility of inferior parenting. Regardless, something was foul and the kids were, um, foul-er. I was amazed at their propensity to not only be mean to each other but to be mean to their loving parents as well. This will go down in history as "Horrible Kiddo Day." From beating each other to screaming because they missed a word in junior scrabble, it was one bad behavior after another. I have never seen so many fits in a week, much less a single day. It is days like this that leave me in a quandary. I just don't know what happened to Lynley's twerps.
Okay, now that I got that off of my chest it is time to get back into my article. Yesterday, I gave a brief introduction and began the process of laying the foundation for my discussion on the Fenretinide (4HPR) / ABT-751 combination. The bulk of my discussion has centered around identifying good research. Today I will talk about the history of Fenretinide and its use in neuroblastoma. An understanding of 4HPR, what it does do, and what it doesn't is key.
WHAT DO WE REALLY KNOW ABOUT FENRETINIDE
A review of what we know about these drugs is pretty worthwhile. I often hear parents talk about 4HPR in an effort to evaluate it for their child and I rarely hear them address the issues that are, perhaps, most important to consider when evaluating this drug. By the end of this section you will know little known secrets to Fenretinide.
Fenretinide is a synthetic retinoid (vitamin A derivative.) 4HPR is believed to effect cytotoxity in cancer cells by mechanisms that include generating reactive oxygen species and by altering sphigolipid metabolism.1,2,3 4HPR has been tested in neuroblastoma patients for over 10 years. There have been several clinical studies (phase I, II, and III) in both adults and pediatrics. 4HPR has been reported to be cytotoxic to neuroblastoma, colorectal, prostate, breast, ovarian, small-cell lung cancer and both acute lymphoid and myeloid leukemias. The drug has also been tested in at least 3 different formulations. Over the years we have learned quite a bit regarding 4HPR. In neuroblastoma, we have learned that results are highly variable. We have seen some heavily pretreated relapsed children achieve significant responses and in some cases even long term remissions. Others, however, have appeared not to respond at all. A review of the literature provides some important clues to this disparity.
Interpatient Variability - It appears that drug absorption is highly variable among patients. For example, while two children may receive the same dose, the drug can actually be absorbed into the body very differently. Some children receive enough drug in their tissues to have an effect while others do not. Understanding why there is such a marked difference is the subject of several studies.
The poor bioavailability of the capsule formulation may have limited responses in clinical trials. Even high-dose schedules of the capsule formulation have obtained relatively low micromolar plasma levels with a wide interpatient variation that has complicated interpretation of response data. Thus, developing improved formulations of fenretinide that obtain higher and/or more consistent plasma levels in a more patient friendly dosing formulation could enhance 4-HPR antitumor activity. Patients that receive higher plasma levels appear to respond better.
Drug formulations - One of the problems with 4HPR is getting enough of it into pediatric patients. During early trials with the capsule formulation kids were required to take as many as 10 capsules at a time. Even at this level not all children were receiving the levels necessary to show activity. Many patients were actually showing more side effects from the corn oil in the capsules than from the drug itself. Furthermore, with so many capsules required, compliance became an issue. Many children were unable to take the amount of capsules required. In fact, one of the later studies was terminated without reaching a maximum tolerated dose due to patient noncompliance with the number of capsules that were needed to be consumed.
THE COOKIE DOUGH FORMULATION
For Fenretinide to be effective we had to find a way to get it into children with adequate absorption and at levels know to provide benefit - enter the cookie dough formulation or Lym-X-Sorb. Many think that the reason that 4HPR was tested in the new Lym-X-Sorb formulation was an effort to make the drug taste better or to simply cram more drug into our children in the hopes of achieving more effective levels. While this is partially true, the real reason for the new formulation is the Lym-X-Sorb itself. It helps the 4HPR become more bioavailable. Essentially Lym-x-sorb acts like a glove that carries the 4HPR from the stomach to the bloodstream, making the drug far more bioavailable. In mice they were able to achieve plasma levels that were 3 to 7 times higher than with the capsule formulation with the same amount of drug. It is hoped that it would provide this same effect in children. Although the phase 1 trial is ongoing at it's highest dosing levels yet, early reports indicate that the same trend is appearing in patients. The hope is that by reducing interpatient variability and increasing absorption children will be able to consistently achieve the levels of drug which have been shown in mice to defeat neuroblastoma. At adequate levels of 4HPR Lym-x-sorb in mice survival was prolonged in both chemo sensitive and highly chemo resistant cell lines.
Well, there you have it, an overview of Fenretinide. How did I do? Tomorrow I will give an overview of ABT-751 and then hopefully get into the very promising combination trial.
With hope, purpose, and lots of words.
Tuesday, June 24, 2008
In the end, since I have had so much trouble writing the article I am going to commit myself to do it in my diary. Maybe here, I can get through it. Here goes!
One of the most common questions that I have received since returning from the Advances in Neuroblastoma Research Meeting in Japan is "So did you see any new promising ideas for my son or daughter?" This question mostly seems to come from parents of relapsed children but there is no doubt that the question of what is on the horizon is on the forefront of all of our minds. It might then surprise you if I told you that one of the most promising therapies to come out of the ANR centered around a drug that has been floating around from the 1960s. Most will be shocked when I tell you that I am confident that there is not as striking a set of data anywhere in xenograft mouse models of recurrent neuroblastoma. (Read that again.) You will be floored when I tell you that all of this excitement surrounds a single drug, Fenretinide (4HPR).
The one presentation generating the most excitement was entitled "Fenretinide/Lym-X-Sorb Oral Powder Combined with the Oral Microtubule Inhibitor ABT-751 is Highly Active against Multidrug-Resistant Neuroblastoma Xenografts." In the end, they found that 4HPR and ABT-751 was a well tolerated oral drug combination that was highly active against multiple recurrent neuroblastoma xenograft models. Over the years we, as parents, have seen multitudes of studies showing activity against neuroblastoma. So why is this one so special. In this article I will lay the groundwork to tell you why this discovery is so important and so promising for our kids.
WHAT IS GOOD RESEARCH?
When evaluating any type of abstract, presentation, or medical article there are some very important things to understand. First, there are many different levels of success when it comes to killing neuroblastoma cells. A study may say "kills neuroblastoma cells" but that usually means very little. It is important to note how much neuroblastoma was killed, what type of neuroblastoma cells did it kill, and finally, was the dose of drug used actually achievable in our kids. Simply put, unless the drug kills neuroblastoma a lot faster than it grows, kills in multiple resistant cell lines, and the drug can actually be given to kids in levels that have shown this killing; why would you want to put it into our kids. The US National Library of Medicine is jam packed with medical articles that show drugs killing neuroblastoma cells. However, many of the drugs kill so little of the cell population that the drug would provide little value in our kids. Many, if not most, articles also show drugs killing neuroblastoma cell lines that are so sensitive that water alone could decimate the entire colony. Often drugs are also tested in oxygen rich situations which can be great for killing neuroblastoma cells but are impossible to mimic in the human body. Many drugs are tested at levels that would never be achievable in the human body because they are so toxic they would likely induce death or toxicities so great that it would be unethical to test on any human being. There are many reasons that seemingly good titles on medical articles get us excited but there are also generally far more reasons that the actual research is less than impressive. I tell you this so that you become aware, that you become skeptical, and so you can identify meaningful research. I also use this as a bar and so that you understand that when I explain the findings of this 4HPR/ABT-751 presentation you understand how meaningful and important this research is to our kids.
I have just touched the tip of the iceberg when it comes to potential flaws in research. There are many more areas of concern but this is a good start. For an excellent overview of the ingredients of qualitative research please review the video below. Watch this video on video.google.com.
This purpose will be continued...
Monday, June 23, 2008
Ironically I was actually up at the hospital on Saturday. It just so happens that I was visiting with another family whose son was in transplant. That afternoon 1 or 2 of the nurses from the very first days of diagnosis were there. There we stood and chatted right outside room 3009. The very room she was diagnosed in. Had I stayed until roughly 9:00 PM I would have stood in the very shadow of our family's diagnosis. It was nice to reminisce. After all, so much of our lives were born behind those walls. To this day, I still hate that Sydney was diagnosed with neuroblastoma but I am still (surprisingly to many) so thankful for the experience. Sounds strange doesn't it? I can guarantee that there are other parents that are probably cursing those words. But, it did bring our family together. It made us stronger and, in the end, happier. We have learned to appreciate each and everyday. Personally, it has given my life meaning and purpose. It has transformed us. In this way we have been truly blessed. I am thankful for each and every gift that we have been given - from Sydney's toleration of that first round of chemotherapy to her building a carousel out of k-nex last night. We have been a lucky and blessed family.
I don't know what today holds and I certainly don't know what will lay before us tomorrow. Life offers no guarantees. Until then we will continue to live in the moment, full of purpose and appreciation. We will continue to remember that life is perspective and that we have the choice of how we live each and everyday.
Thank you for five years of purpose. May there be many, many more.
Friday, June 20, 2008
The next bit of drama which was averted concerned Sydney. Although some of the redness has remained on her palms, she really isn't showing any other signs of malfunction. She had a great day and afternoon and certainly seemed no worse for the wear. From her perspective it was just about the perfect day for a kiddo. You know - eggs for breakfast, trip to Chuck E Cheese's, lunch, play, swimming in the pool, dinner at McDonald's (don't ask), swim practice, cuddles and night, night. It just doesn't get much better than that.
Finally, I wouldn't be the proud papa everyone has come to expect if I did not mention that we received Sydney's Stanford Achievement Test scores in the mail yesterday afternoon. The test is one to measure her achievement. The report compares her performance to students in the same grade across the nation. This is my measuring stick. This is one of the few ways I have to really compare to see where Sydney stands. It is also a great way to identify areas that we need to work on or, God forbid, to help identify neurologic issues. Considering her history of drugs we have to keep this in the forefront of our minds and realize that it is a very real possibility. Finally, Sydney has been in treatment for 4 out of the last 5 years. She has had a lot to overcome. She has constantly taken trips across the country for therapy and had to spend mountains of time in the hospital. For her, an average below the average would be an achievement. Well, I am extremely happy to report that she did tremendously on the test. In reviewing all of the clusters she was either average or above average in every category. In fact, she did not have a single below average rating. In fact, I would even say that she was rated above average in about half of the categories. In looking at the percentile bands I am happy to announce that Sydney scored very well. In fact, she ranked in the 95th percentile in Sentence Reading, 87th in Word Reading, and 86th in total reading. It is funny. The only areas that she seemed to score lower in were areas that required listening or hearing skills. I suppose this should tell us something. Her lowest score was in Sounds and Letters where she was in the 49th percentile and Listening in the 54th percentile. I am pretty sure that this has to do with the fact that she has hearing loss but it is something we will watch. It depends so much on how the test was administered and where she was sitting. Regardless, in the end I could not be happier. It is quite and achievement for her. Heck, it is quite an achievement for kiddos that have not been through a tenth of what she has. There you go. Told you I was a proud Papa.
How many of you know what tomorrow is?
I will give you a hint. It has been five years of purpose.
Thursday, June 19, 2008
To make a long story short, if Claudia can not make it this morning, then it is probably a really good thing that my mind was already up and working so early in the morning. As I mentioned yesterday, there are several big projects on my plate and the only thing keeping them from being completed is the time to get the work done. I have been working diligently on a two part article on the Fenretinide/ABT-751 combination and I still have some work to do. I have some important information in it that I am hoping to get out. Hopefully, I can get it finished today and get it to the editors and reviewers.
Finallv, we are watching Sydney fairly closely. The day before yesterday she complained that her throat was hurting. Although we did not see anything alarming in the back of her throat we put it away in the mental medical file. Last night she began to complain that her hands were hurting and red. After a quick check-up with Lynley we discovered some blisters. At this point we are anticipating the possibility of a case of Hand, Foot and Mouth disease. Of course, only time will tell. It could also be from something else. We will see what today holds.
Well, I had best be off.
Wednesday, June 18, 2008
I have also found time to visit little Hayden this week. On Monday afternoon I found him in the playroom up at the hospital. He has finished his first round of high dose chemo and his counts have fallen off. On the day that I saw him last he had just received platelets. His color was great so I can only assume that he had received some red blood cells at some point as well. He was a bit quiet but content riding a John Deer tractor around the room. He is doing well. That really does not surprise me. It may surprise you a bit but, during this first round, I usually find myself worrying about the parents a bit more than the child. When the kids are fairly healthy entering therapy they generally tolerate it pretty well. Kiddos are resilient and seem to take it in stride. They are also easily influenced by the energy of those that surround them. At this point it is the parents that concern me. It is how they absorb and process this which will dictate what the rest of their family's lives will be like. They may not have a choice that neuroblastoma has come into their lives but they do have a choice of how they live with it. Their old life is gone but there is a new life here. They get to decide what they do with it. They get to decide how they face everyday. You can face it with joy and thanks that you got a brand new day or hatred and anger for the fact that you lost your old life. Which future would you want to live in? The one with hope, joy and thanks or the one with hate, sadness, and anger? It is a choice. It is one that the parents get to decide. You may think you don't have a choice now that cancer has stepped into your child's life, but you do. Everyday you get the choice of how you want to enter it and what kind of world you want your child to live in. Everyday you get to choose whether you are going to put that one foot in front of the other. It is all perception and attitude. In this world, there are many things that you can not control. But, there are many things that you can.
And that is our purpose.
Tuesday, June 17, 2008
This new discovery apparently first took place with Mrs. Claudia during the day. I had a conference call in the morning and meeting at lunch and by the time I got home I had a swimmer. Now that is service. By late afternoon when I got into the pool with the kiddos she was swimming as though she had done it from birth. She simply sticks her head underwater and paddles around like a little turtle, stopping only every once in a while to stick that cute little head out of the water to take another gulp of air. Then she is off. Motoring around the pool again. She is so proud of herself. As you can see above, she celebrated with a Popsicle.
It was quite a purposeful day for her and a proud day for daddy.
Monday, June 16, 2008
Not this twerp Dad.
You see. I figure that Father's Day is really all about the whole real reason that I am a Dad. And no, I don't mean sex (although now that I made that connection I may have to see if I can convince Lynley of that line of thinking next year.) What I really mean is my kiddos. The whole reason I get to celebrate Father's Day and that I get steak for dinner is because of my blushing little bundles of joy, my twerplets. For this reason I think Father's Day should be a kiddo and dad-o extravaganza. In this household, Father's Day should rank with all of the great holidays of fundom. My goal - take down Halloween.
It is for this reason that I surprised the family with a trip to Six Flags. What could be better than spending Father's Day eating junk food, cramming candy and ice cream down our throats, meeting cartoon characters, and having fun on the rides? I will tell you. Not much that I can think of - so that is what we did. We celebrated Father's Day going crazy and having a great time. We did exactly what you are supposed to do on Father's Day. We had a great time together.
Oh, and by the way, the kiddos are already counting down the days until next Father's Day.
Halloween - Watch Out!
Purpose - what Father's Day is all about!
Friday, June 13, 2008
Thursday, June 12, 2008
It really was nothing more than a thought in my head until Claudia entered our lives. There was no magic. I simply kept my mouth shut and my eyes and ears open. Over 3 short days I have watched my kiddos be transformed. Don't get me wrong, they are still far from perfect, (Well far from perfect from other people's perceptions at least - not my own. But, I have already established my bias!) However, I have been amazed by their transformation, not only when she is here but well after she leaves. Again, it isn't that what she has done is magic. In fact, it is simple really. And, like the dog whisperer, we have seen dramatic results and quite possibly the perfect storm.
Honestly, I could write for hours on the revelations that have come in waves through my mind but I will simply give you an example. First off, I am calm and assertive. Second, before I try any of these techniques I ensure that my twerp is calm submissive beforehand. If she (or he) is not, I wait them out. Regardless, here I go. Last night at dinner the kiddos were worn out. After a day of playing at the park and taking no less than three opportunities to swim in the pool they were functionally exhausted. Exhaustion in kiddos eventually breeds irritability. Sugar and exhaustion is perhaps the worst combination which guarantees tears and obstinateness but that is really not the point. Any way, the majority of us had finished dinner. Graham and Ainsley had hardly touched theirs. It was getting late and Lynley had to clean the upstairs. I needed to get the dishes done and get the kiddos ready for bed. We were running behind. This is really no different than any day in the Dungan household. Lynley and I are always racing to clean something up or to get something done. It is hard to find time to really take the time to concentrate on all of the little kiddo details. It is hard to find the extra 30 minutes to sit down and "help" Graham and Ainsley finish dinner. There is stuff to do and we would much rather focus our energy on them in other areas of growth. There just aren't enough hours and minutes in the day to do all of the things that we WANT to do. This leaves many missed opportunities. Like so many other parents out there in the real world, we find ourselves wishing we could do more for our kiddos but feeling stressed about our days and our work and don't always have the time or the ability to focus on every little detail of child rearing that we would like to. It is normal. Is it not?
I tell you all of this to set the stage. This wasn't a perfect scenario. I didn't have time to go through a 12 step process in this case. I was busy. Lynley was busy. Yet, we still had to feed the kiddos, clean up, and get them into bed.
The goal was to get Graham and Ainsley to finish their dinners. It is always a challenge and always time consuming. It isn't that they won't eat. It is that they are too busy having fun and chatting to remember to eat. Regardless, I put Sydney in charge. I introduced her as the teacher (like Miss Claudia) and her job was to help the kiddos eat the dinner. I explained to Graham and Ainsley that they were the students and had to listen to Miss Sydney. It was a game. I was calm and assertive. Kids were almost calm submissive but the game seemed fun enough that they were more than willing to submit to it. I went to finish dishes and do my chores. I watched and listened. Sydney developed a reward system for the kids. They got a penny for each bite. She was gentle but firm with them. Before I could finish rinsing the dishes they were done with their dinners. All of it! I had spent the last 45 minutes barking at them to settle down and eat. Sydney spent less than 5 minutes and had complete success. I was learning here. I was getting a Miss Claudia lesson and she was not even there.
They asked to be excused. I was ecstatic and said sure. I noticed some food on the floor around Ainsley. She was a messy eater - as usual. I decided to take a cue from the book of the twerp whisperer and calmly asked her to help me clean it up before she left. I got out the broom and dustpan and helped my newly titled 3 year old clean up her mess. She was copacetic. No arguments. No temper tantrum. Hmmm. Going for broke I asked them to go out and clean up the playroom while I finished the kitchen before we went upstairs. I spent the next 10 minutes finishing up my chores and getting water cups ready to go upstairs for snuggles and story time. The play room was spotless. The kitchen was spotless. I was upstairs 15 minutes earlier than usual. Hmmm.
Now, this is were you figure out that I am not as clever as a Dad as I though I was - SuperDad with chinks in his armor if you will. It never occurred to me to handle a night like this. I was always stressed out and too worried about finishing to actually take the time to do these steps. We, the big people, always ordered them to settle down and finish their dinner. We were not calm. We were hyped up after an already jam packed day that was not even close to being over. It was always easier to just clean up the floor. We never had the time or thought that Ainsley was old enough to use a broom and dust pan. The idea was to always just get them off to the next activity that would keep them confined while we tried to play catch up. It wasn't that they had free reign. It isn't that they don't (or didn't) have chores or responsibilities. It was just EASIER given the constraint of time and the mountain of work. It wasn't worth the fight and the tantrum at the end of the day. It was just easier to do it.
But this is where we failed. We failed before we even began. In our hustle and bustle we weren't calm and assertive and without those two foundational ingredients we never would have succeeded. Had I asked (in my usual stressed out, hurried tone) Ainsley to clean up her mess she would have thrown a fit and balked. It would have taken 30 minutes to convince her to help me clean and their would have been significant stress and tears with the process. That response is a direct result of my energy and her level of excitement. However, setting the stage with the right tone and asking her in the right state created the right mixture to make everything happen. It worked flawlessly and was proven by another stab at them cleaning the playroom. It was incredible and created an environment for continued success. It was one of those "aha" moments.
I am by no means an expert. I am learning here. I have my eyes wide open. I can't wait to see what the twerp whisperer does today.
I am purposefully calm and assertive.
Wednesday, June 11, 2008
And you thought I was kidding about boot camp! Actually, I have never laughed harder. Lynley and I got a huge kick out of Claudia's "nanny" uniform. I don't know if it was the clothes, the presence of her well-behaved son (Jonathon), or the iron fist rule; but, yesterday the kiddos really began to snap into shape. Have you ever watched the TV show "Super Nanny" or "Nanny 911"? Well, I am living it. It is like my very own private episode. And if everyone was not already aware of my superior SuperDad parenting skills from this diary, I would also tell you that I am picking up a ton from just watching Claudia do her thing. Although, in retrospect, I wish I would have spent a day or two watching her classes at Arborlawn because I would have learned so much sooner. There is something about seeing the techniques applied first hand in your own home with your own kiddos. Watching someone who has experience with managing and educating kiddos and really knows what they are doing is genuinely amazing. They take to it like ducks to water and the result is the perfect balance of space and time - peace. I am amazed. If I was not watching it first hand I would be almost positive that she was drugging them. My kids can actually (almost) be well behaved. It is awesome.
My kids are getting purpose too.
Tuesday, June 10, 2008
On a personal note, yesterday marked the beginning of Twerp Summer Boot Camp. The kiddos were completely and utterly frantic. They were beside themselves and overwhelmed with hysteria. In fact, they way overshot excitement and it took the better part of the day to settle them down and bring them back down to earth. Claudia gave them leeway to be excited but, although they were still far more giggly and goofy than usual, it was not long before she had them all under her spell. Within an hour she had transformed them from a raucous bunch, with a penchant for playing conquer and divide by scattering into different rooms without warning, into a cohesive unit focused on group projects. Yep, it was not long before she had them cleaning up after themselves and spouting "yes mams" and "no mams" without abandon.
Now, I don't want to leave you with the wrong impression. I don't want you to think that my kiddos were all under control. They still have a long way to go. However, it was a great first step. You must remember. These our my offspring that we are talking about. They are sneaky underhanded little snots with my wife's good looks. They are intentionally deceiving and always undermining, constantly looking for a weak spot in the armor. It will take a plan. It will take leadership. It will take Miss Claudia!
I sure hope she comes back today:)
My purpii await!
Monday, June 9, 2008
Miss Claudia is as tough as nails and I think she will be great for the kiddos. They won't be getting anything by her. As much as I love my kiddos, I know full well they need to be led with an iron fist. Boot camp summer here we come! She is no push over and she knows all of their tricks. Poor, poor Ainsley. All kidding aside. Miss Claudia has been one of their favorite teachers. Had Arborlawn stayed open Ainsley would have been entering her class this year so it is actually perfect timing. I think this will work well for everyone.
Saturday was Sydney and Ainsley's official birthday party. To be honest, I had my reservations. I thought it was going to be a flop. Lynley and the kiddos had chosen to have it at GSX, a local gym. I thought they were out of their minds. Boy was I wrong. It turned out to be the perfect place and entirely age appropriate. The kids had a blast and perhaps more fun than they have had anywhere prior. They really did a great job catering to the rugrats. If you are look ing for an activity this summer I would highly recomeend it. Apparently they have some great children's programs and a mother's day out program. Best of all, when it was over, it had completely drained them and they were all ready for a nap. This backfired on me because as soon as the kiddos fell asleep Lynley put Dr. Bob and I to work on the gate in the backyard. We spent the better part of the afternoon replacing and re-architecting 2 wooden gates. By the end of the day she had successfully worn us all out. The good news, however, is that we now had two brand new gates that actually work. Grrrr. Power tools. My manhood was returning. There is something special about holding drills, banging hammers and drinking beer with your veterinarian.
Sunday was a bit more relaxing but still busy. As Lynley calls it, it was Cinderella Sunday. It is chore day, time for Lynley to clean the house and for me to become mountain man, conqueror of the laundry pile. We had both mastered our respective chores by early afternoon. When the kiddos woke from their naps we made a trip to Cook's to visit Hayden.
They have finally completed most of the staging process. The good news is that Hayden is stage III. The bad news is that he is high risk. This means that he will be following the most aggressive of protocols. We spent a little over an hour talking with them and providing as much information and support as we could. Although I was saddened to hear that he was staged high risk I was quite pleased to see the trial that they had selected for Hayden. My mind is not quite clicking this morning so I don't remember the specific protocol number but I can tell you a little about it off hand. The protocol changes up induction with the inclusion of Cytoxan and Topotecan during the first two rounds of induction chemotherapy. It then follows the same regimen that Sydney did. Rounds 3 and 5 include Cisplatin and VP-16 and rounds 4 and 6 include Cytoxan, Vincristine and Doxorubicin. There is then a randomization between single and double transplant. The reason that I like this particular regimen is that I believe that it offers some pretty good possibilities. For one, I believe it still allows you the opportunity to participate in the ch14.18 antibody trial on the back end and I have not checked to be sure but I think they will be eligible to participate in the Sodium Thiosulfate (STS) trial during the Cisplatin rounds. This could potentially protect his hearing. If it is possible to hook onto this trial concurrently it is something that I would definitely talk to my oncologist about.
Well, enough of my jabbering. I have to run.
Friday, June 6, 2008
I also ran into Dr. Eames again while I was up on the floor. It is so nice to see her. I feel like Pavlov's dog whenever I run into her. The moment I make eye contact with her I am immediately calmed. However she did it, she has trained me well. I am so thankful that she is caring for this family. That is not to say that Granger or Howery are not great as well. It just means that Hayden and his family are in incredibly capable and kind hands. In this sense, I am happy for them.
Now, I would be remiss if I did not mention what an incredibly special day today is. Did you know? Today is Sydney's 7th birthday. Can you believe it? Every year is an incredible milestone and just that much more special than the year before. She is turning into such an incredible young lady. I am amazed with what she has achieved in this last year. In my mind, this last year has been all about catching up. For many years we have constantly focused on all of the challenges that Sydney has had to face and during this last year it seems that we have traded in many of those for focusing on her victories and normalcy. Simply put, this was her first full year out of treatment, and she went from catching up to surpassing. I am tremendously proud. In a sense I will miss her year of being 6. It was a great year. But, I am anxious and thankful for the year of 7. May it bring her health and happiness. If last year is any indication there is much in store for her.
My purpose just gets stronger.
Thursday, June 5, 2008
I tell you all of this because Hayden's diagnosis has broken everyone of these rules. If I am being honest, it has rocked me to my very core. After a day of trying to process this I still am coming up blank. I can not believe that it has happening. It just won't sink in. It won't digest. I can't believe it.
Yesterday morning when I received the email from Hayden's family I was extremely skeptical. I mean, come on, what are the odds. Between Sydney's class and Hayden's in the last two years at Arborlawn their can't have been 50 kids. In fact, since Sydney started there at the age of 3 I can't imagine that they have had more than 150 different kiddos in the school. What are the odds of 2 of them being diagnosed with neuroblastoma? Don't get me wrong? I don't think there is a link. I don't think there is anything in the water. But still, I can't get my brain to wrap around it. It is for all of these reasons that I thought that there had to be some mistake. I almost did not write about in my diary. They had to be wrong. It isn't possible, much less fathomable.
After I dropped off the kiddos at school yesterday morning I ran by Cook's. At first I was relieved. His name was not on the board. What I did not realize at that moment was that he was indeed there, just registered under his step father's last name. Sure enough, as I walked down the hall there was that little boy that played with Graham on a daily basis. He looked so healthy. In fact, had he not been in one of those little blue hospital gowns with rockets and planets on it I would have expected him to be going to school. I would have expected him to be playing with Graham. Ironically, this week there were only two kiddos expected in Graham's class - Graham and Hayden. It gets even stranger when you realize that Sydney's very best friend through treatment was Hayden's step sister.
Regardless, it is entirely worthless to continue to debate why all of this won't sink into my head and how utterly unlikely this is. The point is that there is another very adorable little boy that looks to have entered the nb world. Hayden has been having issues with his tummy for quite some time. In fact, I can remember back to October of last year when Hayden was having tummy issues. His parents have been diligent at taking him back and forth from the doctor. It was in March when things really started to get worse. Like so many of the other children with neuroblastoma the symptoms mimicked other things, masking the ultimate diagnosis. It was not until they finally got him in for an ultrasound the other day that the large abdominal tumor became evident. The day since the discovery has been jam packed with tests, pokes and prods. Yesterday brought an echocardiogram, tumor biopsy, port placement, and bone marrow aspirate/bone biopsy. At this point Dr. Eames is 99% sure that it is neuroblastoma but it will take results from yesterday's biopsy to seal the diagnosis. In the days to come there will be a CT scan, an MIBG, and more I am sure. So far there is a good bit of news that has come out of all of this and this is what the family and little Hayden need from us right now. Fortunately, they have not been able to discover any metastasis in Hayden's body. His lymph nodes look clear and he is not showing any other sign of additional tumors. Yesterday he had a bone marrow aspirate and biopsy and today he will have some additional tests to rule in or out any other evidence of disease. This is critical for Hayden and why they need our prayers. These are the items that will define his staging and ultimately what the next few years will be like for Hayden. The difference in what they find are extremely significant. I would provide numbers but I don't know if the family is ready for that so you are just going to have to trust me when I tell you that the results are critical. It is the difference between intermediate and high risk disease. We need to pray that:
1. They do not find any disease in Hayden's bone marrow.
2. They do not find any disease on his bones or anywhere else in his body.
3. The testing on the tumor does not show NMYC amplification and the results come back with favorable histology and biology.
Please say some extra prayers for Hayden this morning.
Today we have new purpose.
Wednesday, June 4, 2008
This has hit way to close to home. It feels as though lightening has stricken twice.
I don't know what to say.
I can remember it all too vividly - that first night after diagnosis. The shock. The horror. The fear. I want to let them know that it will get better. I want to let them know that there is hope.
I know it sounds stupid but I just can't believe that another family and child have stepped into this world.
I hate this damn disease with every fiber of my being.
There is a new little boy that needs our prayers today.
Purpose is racing through my veins.
Tuesday, June 3, 2008
Yesterday was pretty busy and from a work perspective I accomplished absolutely nothing that I set out to. The day was one snafu after another that kept me from doing the tasks at hand. I had server problems at the hosting facility and domain name transfers that failed. Even the things that I planned to finish were not even started. As, you can see, the day did not go as planned. So, when the kids came home from school and wanted me to go swimming I thought. The water was still to cold. It was the exact opposite of what I had planned to do. So, why not? I jumped into my skivvies and made a nutty beeline into the water. As it turns out this was the first good decision I made all day. I had a blast with the kiddos. I had underwater races with Sydney. I had a floating contest with Graham. And, I did this all with Ainsley latched onto my side asking me to watch as she dunked her head under the water. It was the perfect complement to a truly messed up day. In fact, in retrospect ,it was the only "right" thing that I did all day. Thank goodness for the madness of my kiddos.
I did receive a bunch of emails telling me how cute Ainsley was in the pictures I posted yesterday. All I can say is: "SUCKERS!" That is exactly how she sucks you in. Everyone thinks she is all cute and sweet but I am telling you - watch out. Somewhere behind those innocent big eyes and wavy short locks lies the princess of twerpdom - mastermind of the unimaginable. Sure, go ahead and look, but be warned. She is capable of things that you have not even imagined.
Don't believe me?
I did not mention it before because it was too gross but do you know what she did while we were out swimming and playing in the back yard on Saturday? Do you? Well, she smeared her cute little poo all over the bathroom. She thought it would be great fun to paint with it on the mirror, on the cabinets, on the carpet and on the walls. Did I mention the walls were fabric? She also painted the tiles on the floor and the outside of the sink.
So, I will tell you again. Don't fall for it. Twerpdom lurks behind thine eyes.
Remember, twerps inspire both poop and purpose.
Monday, June 2, 2008
You may also notice from some of the pictures that the Dungan pool is now open for business. Although it still was not warm enough for me (I require a minimum of 82 degrees), the kiddos are already enjoying it to it's fullest. My she has grown up hasn't she?
If you would be interested in seeing some of Ainsley's other birthday pictures you can find them here:
The other good news about finally having a few minutes to catch up is that I can finally begin to post information about my trip to the Advances in Neuroblastoma Research (ANR) in Japan. I have completed my first article for the CNCF (there will be a series of articles). If you are interested in finding out more about the ANR, what it is about, and what I learned; you can read about it here: