6:04 AM 10/1/2007
I am getting a little bit of a late start this morning. I have spent the last hour or two writing two new families that have just been diagnosed with neuroblastoma. To this day, my heart just sinks when I hear of another family stepping into our shoes. It just kills me that we have not come farther and that we aren't closer than we are. When I write to a new family I try to always give them hope. I let them know how lucky we have been and wonderful Sydney is. I feel an immediate kinship to them and I want to help. I want to let them know that they can get through this. I love the opportunity to share and I hate it. I am glad that they have found another family and child that has neuroblastoma. I am glad that I can share our experiences and hopefully bring them some comfort. On the other hand, I hate that I do not have something more to tell them. One day I want to be able to tell the family that calls that it is okay. I want to tell them to take a shiny little pill and it will make their child all better. I want the cure and I want it now. We have got to do better and work faster.
On another note, our weekend was wonderful. We even began the process of potty training Ainsley. She did really well considering. In fact, until late Sunday afternoon she did not even make a mistake. Of course, I had her running to the bathroom about every 20 minutes or so. She never really had the chance to make any failures. Sunday afternoon, however, she had the opportunity to fail really big. By now, you know my (completely rational) fear of human poo, so I know I won't have to go into complete detail. Let's just leave it at this.
She was in the kitchen and she looked like she need to go to the restroom. I asked her if she wanted to go to the potty. She nodded 'yes' pulled down her pants and her underwear and made a beeline for the bathroom. Yes, I know that sounds strange. She hasn't actually learned that you can wait until you make it to the bathroom to take off your pants. She thinks that the moment the thought of the bathroom comes to mind you need to strip down right there and then to make a beeline to the potty. Apparently, it is a trained behavior not to strip and run. Regardless, she was off to do her business. I ran into the other room to check on something and the next thing I knew I heard Lynley screaming. There had been a snafu. Apparently Ainsley had already gone number two before we had suggested that it might be a good idea to go to the bathroom. Sure enough, there was a load in her underwear and just like Hansel and Gretel she had left us a little trail all of the way to the bathroom. I can only assume that she had wanted to remember where she had left her pants. By the time I made it to the bathroom I found her wiping - wiping poo all over the toiled seat, handle, and anything she could get near. It did not smell good. In fact, I don't really have anything more to say about that.
In the end, I am not so sure Ainsley is ready for potty training. I don't know whether she has made the connection. Don't get me wrong, she loves going to the potty just like a big girl. I just don't know if she completely gets the whole cause and effect. She knows she is supposed to go potty in the toilet but I don't think she has attached the sensation of the urge to go to the potty with actually going to the restroom. It is an interesting conundrum. One that I will be so thankful once we have figured it out.
Human Poo is still kryptonite to SuperDad.
Purpose, give me strength.
6:09 AM 10/2/2007
Good Morning! You know, one of the signs of being a human being is that you are able to walk upright. I am happy - no proud - to say that it seems that all of my children have met that criteria. Going along with this same line of thinking, I would also surmise that a second criteria of being a human being would be that you would not smear poo on the back of the bathroom door. I mean, that is common sense really. This is something that distinguishes us from chimpanzees, right? Well, unfortunately, it seems that I am in fact a parent of two human beings and one very icky monkey. I don't know of any other way to put it really. Enough said.
This morning I will be taking Sydney to the clinic for an oncology checkup. This should not be anything serious. However, we will be revisiting the subject of Accutane. Technically, I already had this discussion with Dr. Granger over the weekend but we will revisit it this morning to make it formal. I think we are of the same mind. Unfortunately, this is a bit different of a mind than Lynley. For the record, Lynley is doing what she does best. She is protecting the quality of life of her daughter. She is a huge advocate for Sydney and she has done tremendous work to protect her from unnecessary discomfort. I certainly can't fault her for that. Sydney is especially in need of that with a father who is so aggressive when it comes to fighting the beast. I don't just want it dead I want it gone for ever. In this sense I don't want to just sit on the football in the 4th quarter and ride my lead to a 28 to 7 victory. I want to demolish it. I want to grind it in. I want to destroy it. I want to fight on. I want to annihilate it. I want to win 156 to 7.
Wow, I am a bitter little monkey but I suppose it is probably better than the poo throwing kind. Regardless, I am trying to paint a picture for the two points of view. What I am hopeful of is that we can find a way to balance the two needs while providing Sydney with the best possible outcome. I certainly do not want to see her go through what she did after that first dose the last time we tried this agent but on the other hand I want to make sure we gave it our best. In this sense we will probably build up to the dose gradually over a few days. Hopefully, we can get to the necessary dose without putting Sydney into such a horrible state. We will see what happens by the end of the day.
Well, I had best be off. It is time to hit the showers and get ready for an early start this morning.
Today is full of purpose - both human and the other kind.
5:52 AM 10/03/2007
The good news is that yesterday I did not find anything smeared on the back of the bathroom door or find any little surprises scattered on the kitchen floor. However, Lynley keeps walking around the house this morning saying that something smells. Ordinarily I would tell her not to worry about it, that it was just in her head, but after the last two days I have to admit that even I am a bit worried myself. With a two year old being potty trained you just never know what you are going to find.
On a fresher smelling note, all went well it will at the clinic yesterday morning. It should not come as a surprise that it will go down in the annals of oncology that this was another "long" meeting with the Dungan's. We covered many topics and came to many decisions regarding Sydney. One of the first things that we discussed was her new scanning schedule. Lynley and I still aren't quite ready to give up on the quarterly scans but we also aware that too much is not particularly a good thing either. We have elected to take some radiation out of the mix. From now on the only things that we will be doing every three months are bone marrow aspirates and biopsies and a bone scan. We will be holding back on the MIBG and the CT for at least six months. This will save her some hopefully unnecessary radiation exposure. Although it would be possible for disease to skirt around the scanning procedures that we have chosen, the type of disease that we would be finding is probably less likely to occur as time goes by - at least for the CT anyway. The CT is handy for detecting solid tumor but the further we get out from her initial treatment the less likely we are to see a recurrence in the original tumor location. We have taken the MIBG out of the mix because we have not seen anything on it since before her transplant in 2003 and it did not light up at her "relapse." Given this we think it is probably less likely for recurrent disease to show up on MIBG and anything that would, we feel would probably be found on the bonescan. We chose the bonescan because there is less radiation involved and it still gives us a full body view of the skeleton. It should give us a pretty good look at all of her bones and we should be able to detect recurrent disease. The problem with the bone scan is that it is less specific for neuroblastoma. In this sense we are more likely to have a positive finding on the bone scan but it may not be neuroblastoma. It could be just about anything that causes significant bone turnover - injury, infection, etc. Should we have a positive finding it would be an incredibly nervous time as we will have to wait for further diagnostic tests and an MIBG but, at least, we will have temporarily spared her from some radiation.
Topic two was regarding her sinuses. She is still full of snot. Her sinuses have been showing significant congestion on the last three ct scans. It is time to get aggressive. We finally settled in on a pretty aggressive drug combination aimed at dealing with it once and for all. On a similar note there was still a bit of fluid found in her left ear so we are still in wait mode for getting her ears tested for another set of hearing aids.
The final discussion point was putting Sydney back on cis-retinoic acid. After much discussion we decided to put Sydney back on it on an extremely tapered dose and then we will very gradually ramp her back up. In fact, during this first cycle we probably won't even get her up to an efficacious dose. However, we will hopefully protect her from another nasty reaction and hopefully get to the bottom of what is going on. There are certainly no guarantees. Sydney's body is now officially an enigma. With all that she has been exposed to there really is no knowing what is going on in that little body of hers. We will just take it one step at a time. I am a little bothered by the fact that we are not ramping her up more quickly. It seems a little silly to me that this entire cycle will be more an exercise in tolerance and less about achieving efficacy but, then again, that is what most phase 1 trials are about. The promising part of this is that if all goes well we will be able to get her where she needs to be during the next round. I am happy that, at the very least, we are all in agreement that it is probably worthwhile to put her back on it.
Well, with that ,I had best be off. It is crunch time for the golf tournament. I am still looking for a few players (I had some cancellations yesterday) but I am also looking for people that would like to come to the dinner that night. There will be a great band, an auction, and it should be tremendous fun. At the very least it is for a great cause. Tickets can be purchased online at http://www.GolfForLifeCup.org.
Wow, that was a lot of purpose to get out in one sitting.
6:28 AM 10/4/2007
Good morning! Okay, so this diary entry won't rank up there in the annals of your favorite entries. On occasion I just get my self so incredibly busy that my diary has to suffer just a bit. So, first I apologize to Sydney, Graham, and Ainsley who are hopefully 18 and reading this some day. So sorry your Daddy is busy working. Oh and by the way, just so you know, you aren't making it any easier at home. In fact, Sydney, thanks for staying up until 10PM last night and Ainsley and Graham, thank you for waking up at 5:30 AM this morning. Secondly, I also want to apologize to all of those daily readers that are looking for a nice Dunganlet story to start your day - no poop to report today - literally. Finally, I am sorry to all of the other parents who read my diary looking for nuggets of neuroblastoma information. I have been a little shy on that forefront lately. There is more to come.
However, for all of you that are playing in the golf tournament, I am not so sorry for you. This is a lot of work. I have learned my lesson. However, if you would like to play, come to the dinner following the tournament, or would like to volunteer on Monday I would love to have you. It will be a great time. I can tell you that a whole lot of work went into it just to ensure that everybody has an incredible experience and that we make a serious dent in research. Please consider joining us. Go to http://www.GolfForLifeCup.org for more information.
Well, I am off. There is a mountain of golf tournament purpose to get into gear.
5:43 AM 10/5/2007
At this point I am pretty much operating on borrowed fuel. It sure would be nice to get a few solid nights of sleep. My biggest issue is that my mind is racing constantly so even when I do sleep I feel like I have just spent the entire night thinking of all of the tasks that have to get done. The genuinely interesting thing about this is that I have been absent this feeling for so long and had not really noticed it. They say that absence makes your heart grow fonder but, in this case, it really doesn't. It just makes you appreciate what you have even more. I remember this sensation all throughout Sydney's treatment. My mind raced constantly. This was primarily from terror. During these seemingly sleepless nights I thought about what the oncologists said. I planned "what if" scenarios in my head. Research that I had read during the day would literally pound inside my brain until I could digest what it meant to Sydney. Wow, this sensation is almost like living those terrifying nights in the hospital. I thought I had just become used to the sensation. I still think about neuroblastoma every night. It is the last thing I think of before I go to bed and the first thing I think of when I wake and my dreams almost always include some element of research, fundraising, or how I am going to apply any of these ideas to Sydney. Many of the thoughts are the same but the difference appears to be the lack of severe terror and worry. I like thinking about those things but I am thankful to be without the terror.
Right now, this is fairly easy. I am not going to gripe too much. I would just love a complete night's rest with out having my brain jostle me awake. Truth be known there is not a lot of reason to worry. Most everything is in place and ready to go and there is little I could do to change it at this point even if I wanted to. The problem is that my mind does not know that. For some reason my mind kept racing to details of the lemonade stand that Sydney is going to have at the golf tournament with some of the other families. Many of our friends that have stepped into the world of neuroblastoma will be there as well. The Podeszwas, Davidsons, and Mc Partlands will be playing and there are several other families that will be helping out in one way or another. The Stuckers, Anthonys, Saxons, Bradshaws, Aigners, Larsons and Cruses have all helped out and many will even be making an appearance. This occasion will probably go down in history. I can't think of too many occasions that this many families get together outside of a medical conference.
Well, I had best be off. The kiddos are beginning to stir. Graham has already made it downstairs and has usurped the couch that I am sitting on to watch the Wiggles. The normal kind of chaos is about to begin.
This is purpose.
5:12 AM 10/10/2007
Well, well, well, well, well! I am back into the land of the living. Some might even say I am down right perky. Oh boy does it feel good. I am happy to report that I survived the Golf for Life Cup and I could not have done it without help from so many. To be honest, I don't remember a whole lot of it. I was so completely exhausted by the time the tournament arrived that I just kind of went through it on some kind of zombie autopilot. As a first annual tournament and the first I have done on my lonesome I thought it was a tremendous success. I can not tell you how many people came up to me and told me what a great tournament it was and what a incredible golf course we had selected. Anything can always be better in hindsight but I was pretty proud of this tournament. Sure, I learned a tremendous amount from my first attempt. I have taken copious notes and have done my best to ensure that I do few things differently next time. Again, I was extremely happy with the event and I think it went very well. I just know that I can do better to make some things run more smoothly and to keep me from doing things that I probably could have done earlier or at a different time. That would have freed me up to be the host of the event instead of the frazzled worker bee that I turned into.
I also have to give big thanks to all of my volunteers. I could not have had such a successful tournament without those that were there to help me out. There were Gay May and Jerry Geary, my unforgettable volunteers, who handled much of the registration and our par 3 betting parlor. I also have to thank Linda Benge and Gloria Fuller who dropped everything on short notice to come out and help on the day of the tournament. One of the really neat things that they also did was purchase a chance at the auction for me to make a hole-in-one. It was no cheap purchase. I am sad to say I missed the shot but happy to announce that I at least hit the green. Also, one of my biggest fundraisers was our friend Jenny Betz who beat people over the head to put more money on the line at our par 3 beat the pro hole. She made a ton of money for the foundation. Finally, I can't go without remembering to thank my Mom who helped to run the show whenever I was too busy doing something monotonous which I should have done earlier. This seemed to happy rather frequently. Registration went off without a hitch and she also ensured that our live auction display was outstanding. Now, my wife on the other hand simply disappeared for half the day:) Oh yeah, I should probably mention that Ainsley's pre school called and they wanted us to pick her up at about 10:00 AM. They thought that she was under the weather. As it turns out she has stomatitus, a pretty benign viral infection as long as she does not go licking other kids or drinking from the community cup. However, I guess with Ainsley, we just never know. For this reason my number one volunteer went from golf volunteer extraordinaire to babysitter of five. Thankfully she got it all handled so that I could do my job.
The other people I have to thank is all of the other neuroblastoma families that lent their helping hands. Cort Anthony and his mother Laura came to help out. Laura was a tremendous help to my wife who was racing to manage a gaggle of rug rats and a lemonade stand to boot. In fact, Cort became one of the three Dunganteers best playmates. I was so thankful that they came out to show their support. Additionally, Alex Podeszwa's dad, David, and Sadie's parents and grandparents came out to play and lend a helping hand. Finally, I have to remember to give a huge thank you to Ava's daddy, Mark McPartland who, coming from North Carolina, brought out a ton of golfers and sponsors to the event. I know it would not have been nearly as successful without his help. Thank you, thank you, thank you.
Now, believe it or not, these 6 and a half people and some families ran the entire tournament and I guess that is where I failed a bit. I have learned very quickly that we could have done much more with more people. I probably could have used about twenty to do all of the things that I thought of at the last minute. I think this is ultimately the trick. The tournament was great and will go down in history as so but it could have been better. Unfortunately, I would not have known what to do better had I not gone through it beforehand. Next year we will do many of those things and I hope to have the manpower to get it done. Mark your calendars! Our next tournament in Fort Worth will be on June 16th, 2008 back at the beautiful Mira Vista Golf Club. I am going to start looking for volunteers a little bit earlier - now for example - and anyone that would like to be on the tournament planning committee can please send me an email because we will be starting to meet within the next month.
Now, I can not leave my diary without saying how proud I was of my kiddos. With a bunch of 6 and under squirts you never know what you are going to get when you throw them into a new and chaotic environment. However, my kids acted perfectly. They played and had fun but they were also always there to greet somebody politely and thoughtfully. I have never been more proud. I have the best twerps in the world.
You make your Daddy smile -
4:32 AM 10/11/2007
Just as I think life is going to return back to some level of normalcy Ainsley spikes a 102.3 degree fever. We think it is probably a side effect of what appears to be stomatitis. She has small ulcers inside her mouth and under her tongue. She has also shown signs of having some pretty raging headaches. Yesterday afternoon she spent pretty much the entire time cuddled in my arms. Later that evening we were able to get the Tylenol and Advil (we are alternating) to settle in and she finally received some comfort. Of course, with comfort also came rambunctiousness and deep seeded desire to play with her brother and sister out in the yard. Both Lynley and I expected to stay up much of the night and were pleased to find that she seemingly made it through the night rather comfortably. It will be interesting to see how she wakes this morning. Today will be another day at home with my little sicky.
On another note I woke up this morning to great sadness as I read the words of Chihn Tran, another father of a child with neuroblastoma. His son Lucas has been treated at both UCSF and Sloan Kettering. I had an almost instant connection with them the first time I met them. I have been working with his father on the hu3f8 project. I was heartbroken to hear that Lucas was not doing well. In fact, he was doing outright awfully. He has had progression of his tumors which are now quite visible and they seem to have progressed right through both chemo and radiation. From what I have read, Dr. Matthay, a very highly respected oncologist, has told them that it is time for pain management and to allow the disease to run its course. Their questions regarding their son were simple: "Was it better to pass at home or at the hospital?" and the most telling of questions "Is it more painful to have organ failure due to disease or chemo toxicity?"
It was the last question that hit me the hardest. I have thought of these questions many times. As I sat here contemplating the questions I was immediately washed by the reality of the questions that were being asked. This isn't some random theoretically question. This is the question that a mother and father are asking right now about their child's life. They aren't looking for opinions or comfort. They are looking for specific answers to specific real questions. They have been told that their child is going to die from neuroblastoma and they are trying to ease his pain and suffering. There is no euthanasia here. For some reason we don't do that for humans. How do we reduce the suffering of our dying child? I certainly don't have the experience to answer that question. While yes I know of many who have gained their wings and I have sat and talked with many the angel parent about their child and their last final days and seconds I certainly don't have any experience. I can only imagine the horror of this world. I so wish I had an answer.
I wish I could have found the cure earlier. I wish I could stop the pain. I wish I could keep another family from entering this world. Change can't come fast enough.
My dear friends. I am so terribly sorry.
My prayers are with you and I hope Lucas finds some quality to his life.
My purpose feels strangely weak and inadequate today.
3:57 AM 10/12/2007
Good morning! I bolted out of bed full of excitement this morning for some unknown reason and could not go back to sleep. As soon as my mind realized I was awake it bombarded my with ideas and directions so here I am almost an hour later with my mind still racing. I have a feeling that my body will be craving a nap in the early afternoon.
I have a few good things to report. First off, Ainsley seems to be on the road to recovery. Yesterday brought an entire day without fever and for the most part she seemed active and playful. She even spent the morning helping daddy run errands around town. She is a tremendous helper. This is one of her favorite past times. She simple loves helping her daddy. It really does not matter what I am doing. She can always find a way to help and takes great pride in doing so. One of her favorite past times is helping me roll the trash cans out to the curb. Although I have to slow down quite a bit and hunch myself over to get the handle down to her level the sense of pride that splashes across her face is worth the lower back pain that I know will be coming. Yesterday we made all kinds of stops. We picked up some more items from Mira Vista. We stopped by the printer to pick up and drop off some lunch for life materials. All in all, we had a busy morning and I got through some much needed errands.
Last night was a ballet night for Sydney. This is fun for the kids because the rest of us usually play on the playground as we wait for her. They love the focused parental attention. Last night was a bit different, however. Lynley took the kids as I participated on a conference call with Dr. Cheung and a small group of parents regarding the humanization of 3F8. It was good to hear Dr. Cheung. He has been out on medical leave for about 6 weeks and I was happy to hear him sound no worse for wear. I cannot say that I learned anything new on the call but he did spend and little over an hour answering questions. I am not trying to sound like a smarty pants. I had just already had all of the questions answered to my satisfaction previously. However, it was good to see his continued interest and excitement in this project. I was also happy to hear him show an interest in other bodies of research both in and outside the walls of Sloan Kettering. I think many often believe that there is a mentality that it is Sloan Kettering against the world. It simply is not that way at least in all of my discussions with him. The humanization of 3F8 is an interesting and hopeful project but it is only one of many others that may even be more promising. There are many interesting new targeted agents that are on the horizon and we need to keep our minds focused but open. I think that was one of the most interesting points that Dr. Cheung made and one that he almost always tries to sneak in to any discussion on funding. He has also been the one to continually remind me that all of our eggs should not be in one basket. Invest in promising ideas of those with proven experience in delivering improvements to our children. This is one motto of his that I have continued to listen to and one of the reasons I am so supportive of his work. He cares about our kids, he looks outside of the box, and he is not afraid to try new ideas. That is my opinion and I am sticking to it.
On the neuroblastoma front this is another busy day. I have two new relapse families that I have been spending quite a bit of time talking to. I am also working on 4 or 5 research projects simultaneously. I have several committee meetings for various organizations. I have to get my thank you notes out for the Golf for Life Cup. I have 5 Lunch for Life events around the country in the next two weeks. I am helping with another golf tournament in Las Vegas. It is just about time for our biggest campaign of the year for Lunch for Life. I am totally redesigning the Lunch for Life website. I am editing a video for childhood cancer and neuroblastoma. Finally, I have to help get the word out through out Texas regarding the importance to cancer research of passing Proposition 15.
All in a life's work I guess.
My purpose is busy. It is time to focus.
6:39 AM 10/15/2007
Good morning! It was an interesting weekend to say the least. Saturday morning we took the kiddos in for the flu vaccine and Graham showed up with a 100.3 degree fever. By the time we got home he had spiked to about 102. We spent the remainder of the day trying to get it back under control. For some reason he threw up every dose of Advil that we tried to give him. Eventually, with Tylenol on board, he broke his fever in the middle of the night. He has given all appearances of making a full recovery although he woke up at roughly 5:00 AM this morning and is in a full whine. I am hopeful that Lynley will let him survive long enough to get dressed for school. He is pushing every button possible this morning. My son, surely not!
Today will be a special day. In fact, there is a great surprise for us today. To provide you with some background it is time for a little "edumication." On Friday, I mentioned Proposition 15. Although this is a Texas "thang" its impact will certainly be felt throughout the world. For me, its passage is more important than any political election. This piece of legislation will save hundreds of thousands of lives and inject 3 billion dollars into cancer research. Although this is only a fraction of what is needed for cancer in general, it will surely speed the cure. It will save lives - PERIOD. Now, this is obviously not just for pediatrics. The bulk of the money will be used for adult cancer but I am all for the trickle down theory if will get more promising new agents into the pipeline. We need more options and this will provide it. I will tell you more tomorrow about today's upcoming brush with fame but here is some reading to prepare you.
Cancer-Free Celebration: Lance Armstrong Hitting the Road on Texas Bus Tour to Urge Voters to Support Proposition 15
Wednesday October 3, 6:29 pm ET
On Anniversary of His Diagnosis, Armstrong Asks Texas Voters to Approve Historic Investment in the Fight against Cancer
AUSTIN, Texas--(BUSINESS WIRE)--The Lance Armstrong Foundation (LAF) announced yesterday that its chairman and founder will host a statewide bus tour beginning October 13 to urge Texas voters to support Proposition 15 and strike an unprecedented blow against cancer. The announcement was made on a day celebrated by Armstrong as the 11th anniversary of his cancer diagnosis
"We're going to hit the road to urge Texans to vote for Proposition 15 and make an investment in their own lives and the lives of their loved ones," said Armstrong. "Cancer has touched the life of every single Texan and it's the number one killer of people under the age of 85. But in recent years, federal funds to fight cancer are on the decline and it doesn't look like that's going to change. We can't wait for Washington. With Prop 15, Texas is going to lead the charge in the fight against cancer."
Proposition 15 is a constitutional amendment that would create the single largest state-level investment in cancer research, prevention, early detection and control programs in the nation. If approved by voters, the initiative will establish the Cancer Prevention and Research Institute of Texas, responsible for distributing $300 million in grants to cancer prevention and research programs throughout the state each year - starting in 2010 and continuing through 2019. This historic investment will save lives and spur economic growth with the creation of new jobs and the construction of new research facilities and laboratories. By encouraging grantees to seek matching funds, the initiative will help trigger outside and private sector investment as well.
This year, more than 95,000 Texans will be diagnosed with cancer, and more than 37,000 Texans will lose their lives to the disease. Cancer costs Texans $30 billion a year in direct and indirect costs. Nearly 600,000 American lives are lost to cancer every year.
Armstrong will launch the bus tour on October 13 in Austin at the Texas State Capitol and then travel to events in Dripping Springs, the Dallas/Ft. Worth area, Houston and San Antonio. He also will discuss Proposition 15 on KLRU's "Texas Monthly Talks," airing in Austin October 4.
Texans must register to vote by October 9. Early voting begins October 22 and ends November 2. Election Day is Tuesday, November 6.
Another example of purpose in action.
5:57 AM 10/16/2007
It is probably totally inappropriate to say "Wow, he is an adorable little guy." It would be even worse to say "he was my all time favorite bike riding oompa loompa." Especially considering the importance of his journey here, I would never consider mentioning that "he is the neatest mini cancer warrior I have ever seen." Each and every one of those statements would be totally unacceptable, so I am not going to mention any of those things about the little guy. The fact that I will mention is we had a great time at Cook Children's yesterday.
After roughly an hour and a half of waiting we had the opportunity to see Lance Armstrong live and in person. The news conference/rally was attended by several state senators and representatives. One of the key speakers at the event was Rick Merrill, Cook Children’s newest president and CEO. Both Lynley and I were tremendously impressed with him. He did an incredible job representing Cook's. Following his introductory speech there was a gaggle of politicians who engaged in the usual pomp and circumstance and back-patting. Following that, Dr. Murray spoke of the importance of cancer research funding. He even had the help of the star of the afternoon, a 14 year old girl with osteosarcoma.
Finally, it was time. Lance Armstrong stood up to the podium. I guess you can tell from my opening paragraph that I was a bit shocked about his size. He was huge in my mind. He had won seven Tour de France. He had defeated metastatic testicular cancer. He was bigger than life. I was sure he was going to be 3 feet taller than me. Yet, when he stepped up to the podium and adjusted the microphone down a was shocked. I was totally blown away when I saw him in person. He was so small. It is amazing what your brain can do to create such an icon out of someone. But, I guess this is all really unimportant to his mission and his purpose there yesterday afternoon. He was quite personable and he did a great job communicating the importance of the passage of Proposition 15. In his words, "I'm here to tell you, as a cancer survivor, this is what we need." He spent time to tell the story of how the proposition came to be and highlighted the importance of its passage to Texas. He did an admirable job and I was so thankful that he was taking time out of his jam packed star studded schedule to fight for cancer research in Texas. He did not have to take this stand. He could have walked away. But, here he was - fighting for all of us. He is taking a real stand. He is leading the way. And, I am proud to be a part of it.
Believe it or not, Lance is even bigger in my mind today than he was the day before.
Many have asked. "Sure, but what does this mean to pediatrics and to neuroblastoma?" "How many of these 3 billion dollars will trickle down to our kids?" My answer is more! More dollars than we have now. There will be more cancer funding, which means more jobs for researchers, more lab space, and much more research. There will be more awareness and more people trying to find a cure. I can't tell you exactly what the dollar amount will be. I can almost guarantee that it won't ever be what we would like. It will never be what we feel like we need. But, let's be honest, would anything short of a cure and bringing all of our angels back to life be enough. Probably not, but it will get us closer - much closer. It will save lives and it will speed the cure. Bottom-line, there will be children with neuroblastoma that live because of the research that this proposition will fund. To me, that is the most important thing. That is purpose.
Yesterday was a good day for our fight against neuroblastoma.
With the passage of this proposition, there will also be more people with purpose.
5:03 AM 10/17/2007
I know I am stating the obvious here, but, little boys are different than little girls. It goes beyond what can be plainly seen from the naked eye - literally. They are a different species. You may not think they are but, trust me, they are. One of the things that has just amazed me about my son is his propensity for gross boy stuff. He finds tremendous joy in burping and passing gas. Now sure, I could understand if this was a trained behavior. For instance, if he learned it from his sisters or his mother it would be one thing. But all of them find this nonsense pretty gross as well. That would leave me as the culprit and the big male role model but I can assure you that is not the case. Lynley would kill me if I ever did such a thing. She has a very low tolerance for grossosity and a mean streak when it comes from misbehaving husbands.
So, really, it has to be something either inherent in the boy or something that he picked up from school. He does have several boys in his class who have older brothers and we have had to deal with some behavioral issues as a result. One of the kids in the class has taught all of the others to say not so cute little catch phrases like poopie head, butt face, hell, and damn. Trust me, there is nothing cute about hearing a 3 year old say "damn it" when he can't get the buckle on his car seat to work. We put a damper on sayings such as those very quickly. He has learned not to say any of those things around us at home but I have a sneaking suspicion that there is still more of it at going on at school. Everyday, the minute I get Graham into the car I get to hear the explanation of the days events which usually goes something like this: "Daddy, I was a good boy today. I didn't say any bad words. Beckett got it trouble for calling Gabriel a poopie head. But, I didn't say anything bad and when I get mad I just say, 'Aw Pickles!'" Yes, Lynley taught the boy to say "pickles" whenever he gets mad. I have mixed feelings about that but I suppose that a 3 year old can get away with that with out getting laughed at too much. It certainly gave him a suitable alternative which he finds quite funny.
This still doesn't get beyond his stinky spewing orifice problem. The boy loves to toot. I can't directly blame this on his friends at school but I just don't know where he got it from. I would love to use Lynley's example and come up with a suitable alternative but I just don't know what that could be.
I can't believe that this is what my life has come to. I get to do important work everyday. I get to help families. I get to raise research funds. I get to meet with top investigators across the world and discuss the very height of the neuroblastoma research world. I get to be part of the solution to a horrible problem. It is very important to me that I stop neuroblastoma and here I find myself trying to keep my son from farting in public. It just doesn't seem right. This is a murky area.
Does this qualify as purpose?
4:52 AM 10/18/2007
The good thing to report is that everyone made it through school yesterday, but, just barely. Sydney received a green sticker instead of a blue sticker in her take home notebook. There are four levels twerphooddom at Southwest Christian School. There is blue sticker twerpness which means you have been a pretty good kid. Then following that there are descending levels of twerptitude. These are green, yellow and red. Sydney's green sticker is representative of the fact that she did something wrong but that it was a single incidence and she corrected her behavior. At least that is what it is supposed to mean. The teacher always tries to jot a few notes down in cryptic fashion to give us an idea of what transpired. For instance, it might say "talking in circle time", "did not keep hands to herself", or "did not do homework." You see, these are simple infractions. They need to be corrected and dealt with but, in the big scheme of things, these are generally not huge life events.
This is why it caught me by surprise when I opened up her notebook to find a green sticker and words that read "Threw rock at recess (hit friend)." To me this was a fairly serious matter. I pressed her for more. Sydney very nonchalantly said "Maddie gave me a mean look. So, I threw rocks at her. But it is okay because I said sorry to her and she said sorry to me for being mean." I was blown away. She received a green sticker. Isn't this supposed to mean a "minor" infraction. I had already begun to assume that she must have been throwing rocks at something for fun and accidentally hit her friend. But no, my kamikaze little stone beaner was actually trying to hit someone. To me, this was no minor infraction. To me, this was like red sticker stuff. Call in the parents. Have a meeting. Give her kitchen duty for a month. This was serious stuff.
After reading the words and hearing Sydney's explanation I just can't believe that this is all there is. Am I missing something? Is it now acceptable to throw rocks at people that are mean to you. Because, if it is, the world better watch out because I have a few people I would really like to pop in the forehead. In fact, I might just grab a sack of pebbles to keep handy in my car for when people rudely try and cut me off or for when the fast food lady gives me that look when I ask for extra ketchup. I have to be missing something here but I just can't figure out what it is. There has to be something more to the story. If what we believe happened really happened there must be more action. Sydney can't go through life thinking that she can throw rocks at people when she gets mad at them and then think it is okay because she apologizes. I am confused and I think we will have to chat with her teacher this morning. I don't like it one bit and I especially don't like it when it is my kiddo.
None the less, I punished her all afternoon. They are working on the correct formation of T's in class this week so I asked her to highlight every 'T' in the 4 page Kroger newspaper ad. Then after that she had to memorize her bible verse that is due on Friday and then, finally, she had to do laundry with me instead of watching Sponge Bob or playing outside with her sister and brother. I still don't think the punishment fits the crime but we will find out more today. Regardless, I have one hot headed little rock slinger and one little farter. I wonder what today will bring.
Purpose, take me away.
5:29 AM 10/22/2007
Well, the good news is that nothing tragic has happened. We simply did not have any internet access on Friday morning so I wasn't able to write in my diary. As a full fledged computer nerd there is nothing more annoying but, I know things could always be worse. Over the past few days the kiddos have been pretty good and things have continued as they should. However, we have clearly done something wrong in the whole raising kids thing that I am yet to figure out. While yes we have a pretty good excuse I am less concerned about firmly placing the blame on myself and more interested in finding the answer.
You see, my kiddos ALL know that any ache and pain or acting thereof warrants attention in this family. They have tested all of the parental trigger switches and, over time, have figured out that this is the most effective weapon to get what they want. The problem is I don't know how to fix it. You see, for quite a while, years in fact, we have tried to ignore aches and pains. Well, "we' don't but I sure thought that we acted like we did. The problem is that the kids just keep wearing us down until we respond. It is hard to ever know what the truth really is. To be honest, Sydney has become such an expert in faking pain to get attention I honestly have no idea of whether it is real anymore.
It isn't only Sydney. It is Graham and Ainsley as well. They are all excellent actors. I don't really know whether Graham and Ainsley do it for the same reason. In fact, I suspect the do it just because their cool big sister does it. Ainsley has become a master in very short time. In fact, if I had to pick one who exuded the symptoms of neuroblastoma the best it would be her. If it were based on the symptoms she fakes alone there is no doubt in my mind that she has neuroblastoma. They do it so well it is almost comical. I have had my own fair share of strange looks in the middle of the grocery store when one of them would complain of hip pain or belly pain and I would tell them that it was fine to walk it off. I have even gone to the other side and tried to un-reward and even punish those with pain. I can't tell you how many times I have put one of them in timeout for having pain and discovered in the process that they were faking it. Thankfully, I have never put one in time out when having real pain but I am sure that day will come. More importantly, what message am I sending to them now.
In the end, I know that this all came about because of the attention given to Sydney with small aches and pains. We have been very careful to monitor everything with her. I would hardly think that anyone would be different after being through her journey. Regardless, she trained the rest of the twerp brigade and now we have a whole slew of fakers. I no longer know what we did right, if anything, but I certainly know that we created a monster when it comes to faking pain. Furthermore, I haven't figured out what to do to fix it and I don't know that I ever will. This is a confusing one.
Ouch, my purpose hurts.
2:53 AM 10/23/2007
Yes, you read the time correctly. What can I say? I am mental and having trouble sleeping. Go figure. I have been up responding to email for the last hour or so and I figured it was as good a time as any to jot some thoughts down in my diary. To be honest, I could not sleep because my mind was racing. I am incredibly excited about a new project that I am working on for Lunch for Life.
A couple of weeks ago a was approached by a group of mothers of children with neuroblastoma who were interested in creating a Lunch for Life cookbook. Yes, I know, brilliant idea. I really think I should have come up with it. But, alas, I did not. Thankfully, they came up with it and brought it to me. The next thing I know there were meetings and committees and, well, a bonafide cookbook is on its way for Christmas. Of course, that means that there is a flurry of activity to get everything put together over the next month. We will begin taking presales at the beginning of November and the books should be available at the beginning of December, just in time for Christmas.
Each recipe in the cookbook will honor a child with neuroblastoma. So, if you have a recipe, please send it in our direction. We have a deadline of getting all of the recipes for the cookbook by November 1, 2007. I would love to include as many great recipes as possible. If you have any terrific recipes please send them to firstname.lastname@example.org.
We need recipes for the following sections:
Salads and Dressings
Soups and Sandwiches
Kid Friendly Recipes
Recipes need to include the following information:
List of ingredients
Your relationship to a child with neuroblastoma (i.e. friend of Sydney Dungan, grandmother to Sydney, etc.)
Name, diagnosis, birth date, and picture of the child if you have it or contact information of where we can get it
Please include the section title as the subject line of your email. This will make it much easier to sort the recipes. Thank you so much for your help. Overwhelm us with great recipes. This is really exciting and I can not wait for Christmas. I know this cookbook will help raise some much needed neuroblastoma research funding and it is going to make a pretty awesome present as well. Thank you in advance for your help.
Apparently cooking can be purpose too.
5:14 AM 10/24/2007
Good morning! Look at me. I slept. I am down right perky which is not only difficult considering my sleeping problems as of late but complicated by the fact that I am a very manly man. Lynley has informed me that manly men are not supposed to be perky. So there you have it, the first true paradox of the morning.
Things are going well around the Dungan household. The squirts are a little nuts but, all in all, they are doing well. The 3 of them have really begun to play well together. Sure, there is always plenty of "he did, she did" when we are in the vicinity but, for the most part, they have really begun to play well together. They spend as much time as possible together outside in the back yard. The love to play make believe in the playhouse, swing on the swings, and, the current favorite, climbing the tree over the neighbor's yard and driving their neurotic dog nuts.
It is fun to watch them have so much fun together and, at a time where we have spent the last 6 and a half years in supervision of their each and every move and having at least one of us participate in all of their activities, it is fun to see them become a self entertaining as a group. Honestly, I love playing with the kids but, it is also quite a treat to sit back on the porch with my wife, enjoy a cocktail, and get to spend some time alone with her. Yes, we can see them. Yes, they come up ever five minutes to complain about one of them bumping into another. Yes, the neighbor's dog is barking at about a 1000 decibels. But hey, after what we have been through, this is romance. Bottom-line, I like spending a few uninterrupted moments with my wife.
Everything else seems to being going well. I am working hard on the Lunch for Life Cookbook and the new Lunch for Life website amidst all of my other projects. Lynley is busy at work appeasing the masses. The kids are all doing well in school and seem to be moving forward in leaps and bounds. I always hesitate to say things are going well because of the fear that it will all be taken away at the mere mention of happiness. But, what can I say? I am fundamentally happy.
It is a deep breath of purpose.
3:40 AM 10/25/2007
Good Morning. This morning I am in a quandary. One of the things about neuroblastoma and its treatment is that they always seems to have some surprises. I think it is partly because children are often so far on the cutting edge of treatment that we often don't know exactly to expect. Furthermore, neuroblastoma is an insidious sneaky disease capable of ruling parents lives with fear.
I was contacted a little over 1 month ago by a family from Australia. It seems like this diary continues to be a source of some information on the ch14.18 trial (ANBL0032), the first antibody trial that Sydney participated on. In fact, if you Google it Sydney's website is on the first few pages of hits. For this reason, I guess, I am contacted fairly regularly by families who are considering this treatment for their child. I don't mind the questions and, in fact, with so few of us with children that have experienced it, I sometimes feel it is our responsibility to share our experience. Regardless, it was this family from Australia that contacted me about a month ago with a list of questions.
Eventually this family decided to put their son on this trial. Although he had the usual pain and the usual symptoms this little guy made it through his first round without any surprises. He then started Accutane as per the protocol roughly 5 days after completing the antibody. Five days after that he started experiencing rather severe pain in his knee and, within a few more days, he had stopped walking completely. Two days ago they took him in for a bone scan and yesterday they received the news that there was abnormality in 3 different places - his clavicle, his thigh, and his knee. The oncologists have said that it could be bone thinning or calcium buildup but I think everyone is fearing that it is probably disease progression.
I, on the other hand, don't want to believe that it is the case. While I can't recall anyone ever have symptoms such as this little boys during this stage of treatment, the numbers just don't add up. None of the spots that light up on the bone scan are original tumor sites. He just received a fairly large dose of ch14.18 and you would think that it would have at least stalled a progression. I can think of all kinds of different reasons for him to have pain and swelling and other anomalies both from the antibody and Accutane. I have seen several children on both of these drugs have some strong reactions. I have seen areas of known tumor swell even to the level that they can be detected radiologically. I have also seen both Accutane and the antibody create severe pain days after treatment, although rarely. What I can't explain as well is the fact that he is no longer walking and nothing seems to explain the three spots of abnormality on a bone scan. Hence, these are the reasons that everyone is fearing progression.
I guess I am writing this in the hopes that someone might have seen something like this. I would love to provide an answer or a direction for this family but I just don't have it. The family has scheduled an MIBG scan but I am sure that is days off. They will have to wait with a child on morphine and still in pain. Any ideas?
There is purpose in Australia too.
4:30 AM 10/26/2007
Good Morning! Wow, 2 days without internet access. What am I going to do? Well, I will tell you. I am going to fly to Las Vegas for the second of the Golf for Life Cup brand of tournaments on Saturday. It ought to be tons of fun, but with the Lunch for Life Cookbook, the new website, and the mountains of emails waiting for me; it is just one more thing in an already over packed schedule. The good news to report is that all of the kids are doing wonderfully. Can you believe that? I know, surprising isn't it.
Today is grandparents day at Sydney's school. Not only is there a play planned but it is also a very cleverly devised way to keep children out of school and parents out of the office. On this special day Sydney is not required to be to school until 9:30 and better yet they will be dismissed by 11:15. I don't really know how you can call this anything less than a day off of school. Regardless, this will give Sydney and I a chance to spend some special time together before I head out of town tonight. She will get to participate in some of her favorite pastimes which include going to the printer to pick up Lunch for Life materials for some of the kids, running into Mira Vista to pick up Daddy's golf clubs, and, her favorite of them all, hopping into Daddy's office for more Lunch for Life materials. It may not sound all that exciting but until we have seen it through the eyes of a six year that should be in school we truly have no idea of what a special occasion it is. Of course, I mean special occasion by the fact that Southwest Christian School starts late at least once a week, finishes early a couple times a month, and gives up altogether at least once or twice a month. So, yes, if by special occasion I mean about once a week then, there you have it, she is pretty easy to please.
Well, I had best be out of here. I have a busy day ahead and if I want to get any real work done it looks like this will be my last shot of the day. Kids are great. Wife is great. Daddy is out of here.
Off to purpose.
5:41 AM 10/29/2007
Good morning! Well, first off, I have to apologize for not writing in my diary for the last few days. The second thing I have to tell you is that it has been a technical difficulty that has kept me from the internet. It just so happens that we were without internet access for nearly a week. Regardless, I can tell you that there have been many adventures. Although I did not post them I did write my diary entries everyday. and I posted them this morning.
Last weekend I was in Las Vegas of all places for the second Golf for Life Cup/Amazing Grace Golf Tournament. I had a great time but I was only there a very short time. In October Lynley keeps me on a very short leash. You may remember that it was at the end of October nearly 3 years ago that I was at a CNCF board meeting in Chicago when I received the call that Sydney was complaining of pain in her foot. That was what began our relapse saga and well over 2 more years of treatment.
You see, she so those events totally differently than I. To this day Lynley does not believe that Sydney relapsed, so she sees all of the treatment and trips to New York as being a huge disruption of our lives and the quality of life for Sydney. It was that fateful night in October that dictated that the next few years would keep Sydney in painful treatments and far away from the normalcy that we all craved for her. Yes, through these eyes I can definitely understand why October is not a favorite month.
On the other hand, there is my perspective. I am less sure of whether Sydney relapsed in October 2004 but I can tell you that I am definitely sure that Lynley and I see the events completely differently. I see the 3 years that would follow as being a gift and quite possibly what might lead to a cure for Sydney. That October changed the tide for us and we went immediately from having no options to a smorgasbord of treatment delicacies ranging from light immunotherapy to your heavier meals such as MIBG, high dose chemo, and another transplant. The key here is that we went from having no options to almost limitless choices. I believe it was this "chance" opportunity that opened the door to these therapies for Sydney. I also believe that if it was not for this continuation of therapy Sydney would have likely relapsed.
Now, I need to make some disclaimers here from the standpoint of someone who is slightly more rational than myself. From a scientific standpoint I have no proof that a continuation of therapy is any better than standard therapy. I have no proof that Sydney would have relapsed had we not continued therapy. In short, I have no evidence that anything that we did actually provided any benefit at all.
What I do have is Sydney and that is about all I can say. Her treatment was her own and for whatever reason her history of treatment is what brought her to the point that she is today. So, for us, for whatever reason, she is here. For myself, I have to be thankful for whatever decisions that we made and the entire journey that brought us to this point. For these reasons, I see October as being just another necessary component of what got us to where we are today. I still cannot guarantee what our future will hold but our past is what it is because of what happened on October. I have to be thankful for it because it is one component of what got us where we are today.
See Lynley and I are both completely irrational and yet completely sane at the same time. We see the events totally differently. We process them differently and we hold them up against different benchmarks. Oddly enough we are both right and she is still here. We have done something right.
Purpose comes in all different flavors.
5:23 AM 10/30/2007
Good morning. Well today opens on a somewhat of a sad note. We are still in the process of replacing Sydney's hearing aids. With all of the sinus congestions and ear infections we have had plenty of trouble trying to get her cleared up enough to even begin the process of getting here ears tested for the new set. After going back and forth with the audiologist and the ear, nose and throat doctor we finally just stood up and said, look, we are getting the kiddo hearing aids and we are doing it now. That doesn't sound so sad does it? Well...
One of the reasons we get ears tested is to see how much hearing loss Sydney has and if her hearing has changed. I am disappointed to report that Sydney's hearing has continued to deteriorate, even nearly 4 years outside of her receiving the ototoxic chemo agents (Cisplatin and Carboplatin). Her hearing loss in the high pitches has worsened from severe and she is now considered to have "profound" high pitch hearing loss. I am saddened for two reasons. Obviously, I am sad for her that her hearing is worse. It is yet another hurdle for her to overcome. Secondly, I am disappointed that I have to report that her hearing has continued to deteriorate this far out from therapy. I know I had hung my hat on the fact that hearing loss "should" not continue to deteriorate after a few years from exposure to the agents and here I am having to report that "should" clearly does not mean always.
Another interesting thing that we learned about from the audiologist is that they have discovered that there is a genetic twist to ototoxicity. In other words, some people are more likely to experience the ototoxic side effects more than others because of their genetics. This would explain why some kids are affected and others are not. Clearly, it still appears that most of us have some level of hearing loss so either the level of drug we are receiving overcomes this genetic link or more of us than less have the genetics that make us more susceptible than not. It isn't something that I would run out and have our children tested for. It isn't like we would choose not to expose our child to Cisplatin if they were more susceptible. At this point, it is still a vital drug to combat neuroblastoma. However, I am glad to see research move forward. Now, if they can just figure out how to turn it around.
I can still shout purpose.
5:26 AM 10/31/2007
Well, here we are on another ghoulish Halloween and me with no internet access. Ordinarily, I would go into a long rambling rant about how the man (namely Charter Cable) is bringing me down and how their lack of adequate customer service or knowledgeable technical support has impacted my life. Yes it is irritating. Yes, I don't like them. And, yes, they are really cramping my style. But, hey, it is Halloween. I have kiddos to outfit. I have candy to give out and, oh yeah, I have the brand new Lunch for Life website to finish and to publish on the world wide web. By the way, please note that, I am behind. Don't tell anyone that the new Lunch for Life website probably won't be ready for its big debut on November 1st and certainly don't tell anyone it was my responsibility. However, you may feel free to blame the great local cable monopoly, Charter Cable, as they have ultimately put me behind schedule.
Regardless, I have outfitted squirts today. I really wish I had more time because I really do love Halloween. I would get great satisfaction of really going all out with the kiddos. In fact, if I had the time and the where with all I would probably turn my house into a haunted one. This year is the first year I really don't have an excuse. Previous year's have precluded me from getting into the spirit. You may remember that every Halloween except for the last has found us inpatient. And last year I was just beginning to get back into the groove by celebrating our first Halloween at home and out of Cook's Spa and Cancer Lounge. This year I, once again, over booked myself and have spent my few free hours working on this website instead of planning the Halloween extravaganza to end all Halloween extravaganzas.
Oh well, I always have next year and with another year in our back pocket the little curmudgeons will certainly be old enough to contribute some child slave labor. In the meantime I will just have to suck it up and be normal. So, for this year, I will limit myself to escorting Belle, Optimus Prime, and Cinderella around the neighborhood and I will do it happily.
I still haven't figured out how to fit all of the purpii in.