Wednesday, September 30, 2009

Finding Ainsley.

That moment shot through me like an arrow. I went from total exuberance to immense fear. To be honest, I haven't had that feeling of emptiness, that void left deep within my soul, in several years. I make no excuses but thankfully it was not nearly as bad as it could have been. As it turns out, the question of "Where's Ainsley?" was easily answered. She was still in her gymnastics class back at GSX. Her class runs an extra 15 minutes longer than Graham and Sydney's Tae Kwon Do class. Still, though, I was in shock.

How could I forget one of my children?


A plethora of horrible dad feelings rushed through me as I raced back to GSX. Due to the wreck we passed, I had to find another route. Worse yet, her class was ending in 5 minutes and I was about 8 minutes away. I quickly called GSX to let them know that I would be a few minutes late. I put my foot on the gas. I bolted back. I violated plenty of laws too. Of course, I am not going to tell you what they were because I also realize that my personal private diary can be used against me in a court of law. None the less, I made it back safely in record time. I arrived a few minutes after Ainsley's class had completed.

As I walked in, I watched another of the very last families walk out. I then went to grab the door to the gym. Sure enough, Ainsley was pushing through from the other side. She had not cried but I could tell that she was beginning to get worried. As she saw me her eyes began to well up. She jumped into my arms and gave me the absolute best hug I have ever received. To be honest, it was one of the best moments of my life.

Sounds strange doesn't it?

I don't know what to tell you. I felt absolutely complete at that moment.

I have absolutely no clue about what I am supposed to learn from this experience. But, I am quite sure that it won't be happening again. On the other hand, it was one of those moments where I got to, once again, be reminded of how valuable and precious my little twerplets were and how lucky of a father I am. I can't say I recommend leaving your child behind at gymnastics but I hope that this story makes you want to hug your little twerp that much harder this morning. I also hope you get some sense of the tremendous joy I felt when I received my hug from Ainsley.

It is good to be reminded every once in a while.

On our way home that evening Sydney asked, "Are we going to tell mom we forgot Ainsley?" I said "Of course, we are. We have go to tell Mommy so she can make us feel better." I tried to use this as a teaching experience to teach Sydney the importance of being honest and facing your fears in these situations. At this point, it seemed the least I should do.

When we walked into the house the three of us marched straight out onto the porch where we found Lynley. I faced our fears and said:

"Lynley, Sydney forgot Ainsley at GSX."

That, at least, broke the ice.

I am just happy to say that this morning I have all of my purpii back. I even counted this time.

Tuesday, September 29, 2009

Oh no I didn't!

You know, as a father, I rank myself up there pretty high. Oh sure, I know, you must be thinking that I am rather full of myself. Well, I don't mean it that way. I mean, I do think I am a good dad but it is not because of my swelled head. My perspective is this: Daddydom and Husbandom are the two things that are most important in my life. So, if they are going to rank up there that high they have to be my main focus. And if they are that important, they must be the things that I work on the most. It is just the way things are. I am a good dad because I try really hard. I really do. I focus. I am there. I am engaged. I am a part of my family's lives.

Furthermore, I have had a pretty good track record. Three kiddos so far and I haven't misplaced one of them.

Well, until last night that is.

You see, yesterday afternoon was hustle and bustle. Graham had a late doctor's appointment with Dr. Debbie (No flu or strep, BTW) Lynley took him to the doctor while I picked up the girls from school. Then it was the usual race. Get homework done. Get everyone juiced and snacked and into their uniforms. This was a Tae Kwon Do night after all. The point is that there was plenty going on.

On the way to Tae Kwon Do, Lynley called to tell me that Graham tested negative for flu and strep but that he had another fever and they needed to make a run to the pharmacy. For some reason my phone was ringing off the hook. There were 2 more calls before I got there. None the less, we arrived at GSX and I got everyone situated.

Tae Kwon Do was awesome. They began teaching Sydney her new form and before anybody knew it she had completely memorized the entire new routine. This was no minor feat. This usually takes a week or two to get the moves memorized much less perform them well. Regardless, Sydney had it nailed - and I mean nailed. Everyone was blown away by the speed at which she picked it up. There were high fives and accolades all around. No one could believe she learned it so quickly. Amazing. By the time class was over Sydney was ecstatic. Heck, we were all pumped. We could not wait to get home to show mommy and Graham what we had just learned. As we walked out the door there were more high fives and slaps on the back.

Boy, were we cool. It was fun.

We hopped into the car and sped ourselves home. There was more to keep us busy on the way home. Not only were we talking about how excited we were at her accomplishment but there was also a significant car wreck that we witnessed on the way home that garnered some of our attention. It was not long however before we were back to congratulations.

Wow. What a day! What an accomplishment!

Deep relaxing breath...

Hold on.

"Daddy, where is Ainsley?"

Monday, September 28, 2009

Flu Shot Woes

That title is actually pretty misleading. However, to a five year old, the concept of cause and effect exists right on the surface of what you see. The problem with this simplistic view is that it it rarely seems to hit the nail on the head. It often makes an ass out of umption. That is the issue we face with Graham, who believes - whole-heartedly - that the flu shot that he received Saturday morning is the reason he feels crummy now. In other words, he received the flu shot and is convinced that he now has the flu. As in, the flu shot gave him the flu.

Now, it would not surprise me that Graham might feel a little out of sorts after the flu shot. After all, some people have cold-like symptoms, including sniffles, headache, runny nose, sore throat, cough, and body aches for a day or two after getting the flu shot. We could even expect the Dudester to experience a low-grade fever. Unfortunately, his symptoms have been a little more pronounced including a fever as high as about 103. He may indeed have he flu. His diagnosis may be smack on even if his perceived cause is probably not on the mark

So, the Grahamster is staying home today. I expect that we will take him by Dr. Debbie's this morning to rule out the swine flu and to see if there is anything else amiss. But, as of now, we are just assuming the boy caught a bug at school. We know of a few that have had swine flu and it would not be a huge surprise. Furthermore, if we are going to get it, I suppose I would be more inclined to have it now before it transforms into something more serious and - gulp - deadly.

As far as Graham is concerned, well, he woke up about 5:20 this morning. Currently he is sitting in the chair just over my left shoulder watching the Disney channel. At the moment he seem as happy as can be. He is full of snot and has a loose cough but seems very much himself other than that. Regardless, he won't be going back to school until we can be sure that he does not have the swine flu and we can get this fever under control. Right now, his temp is normal but we will have to wait to see what this afternoon brings. Hopefully, a cooler head will prevail and tomorrow he can head back to reality.

It looks like both Lynley and I will be taking off parts of the day to care for Graham. Thankfully, he is a great patient and is content to sit and watch TV most of the day. That will give both Lynley an opportunity not to fall too far behind at work. In fact, without the barrage of people at the office door and on the phone we might even accomplish a bit more.

So, I am off. A day of Dudely purpose awaits.

Friday, September 25, 2009

Green Stripedom

Well, after a long day of bailing Ainsley out of the big house, we finally got back to ordinary Dungan twerpdom. Last night Sydney and Graham had their third belt test and they are now official green stripes. Here is a great shot of them with their instructors Masters Paul and Adrian after their belt tests.

This particular belt test was pretty interesting as it featured only colored belts so we had the opportunity to see many of the higher belts test. With each level, testing gets more complicated and encompassing. This time Sydney and Graham both had to perform their forms, 3 defenses, and several combination kicks. They also had to spar and break a piece of wood with a kick.

Tae Kwon Do Forms are performances of a sequence of typical techniques, either with or without the use of a weapon. This sequence is sometimes called “imaginary fighting” as it involves pre-determined and choreographed routines, sequences and patterns which resemble real combat, but are artistically non-combative or cooperative. These Tae Kwon Do Forms are performed as a way of practicing basic and advanced techniques in the martial art as well as in open competitions. With each belt level the forms become more complex and utilize more advanced moves. To give you an idea, the particular form they just completed included the memorization and performance of a pattern of roughly 30 to 40 different choreographed moves.

The sparring was also interesting as we had the opportunity to watch many of the higher degree belts as well. It was impressive to see them spar without holding back. I was amazed at how hard they hit. We spend so much time practicing with control and it is really enlightening to see it at full force contact. Graham and Sydney were not as impressed as I was but, then again, I am only a mere mortal. What do I know? I still maintain that this group of kiddos, especially the kiddos on the team, are extremely impressive. It is no wonder that they do so well nationally.

Well I had best be off. All of the kiddos are home from school today and I am in charge. I am thinking we will have a big breakfast and maybe a trip to the zoo. I am looking forward to a great day with the kiddos.

It will be purposeful.

Thursday, September 24, 2009

A trip in the back of a police car.

Well, it finally happened. I must admit that I thought Ainsley would be a tweener before she had her first trip in the back of a police cruiser. This is clearly too early. It must be that Zachary Rogers.

Dear Mr. and Mrs. Rogers,
We were saddened to hear that our daughter was found in the back of a police cruiser with your son today. Worse yet, we understand that Ainsley was not the only girl to be found with your son. We don't know exactly what rules you have in your household regarding dating but we find this unnacceptible. Furthermore, we are concerned about Zachary's influence on Ainsley. Frankly, we did not expect to see Ainsley in this situation until she was much older. We would appreciate it if you would council your son on proper courting procedures and work to ensure that they he doesn't end up in this situation again.

Mark and Lynley Dungan

Hmm. It seems Zachary has some purpose as well. I have my eye on you.

Wednesday, September 23, 2009

I am sorry son.

Yikes, here I was typing away and nearly ran out of time to write in my diary. Well, I am here now. It just occurred to me that I never updated the diary on our little talk with Mrs. Lewis (Graham's teacher). Her assessment of the situation was very close to ours. Graham is a good kiddo and he is trying to find out where he fits in this world. She felt that we would continue to deal with these issues as this would likely be a big year of change for him.

Fundamentally, Graham is kindhearted. First, it is clear, he is mimicking behaviors he sees in other boys in an attempt to fit in. This is why we have seen some of the slapstick behaviors. The trick for him will be in finding which behaviors are appropriate to emulate and which are not. Clearly, spanking others is not. He also has not figured out where to draw the line. When do you go from funny to inappropriate? I hope he finds this out because, as Lynley will tell you, I have had my own challenges with this little life skill over the years. Poor kid.

The second hurdle for Graham is the fact that he is a rule follower. In a moment, I will share a funny story which will give you insight into why he is this way but, for the time being, accept it as fact. Graham is tremendously frustrated by those that do not follow rules. Rules give him structure and are an effective way for him to deal with the chaos of life. Rules are predictable and stable. Clearly, if everyone followed them, life would be much easier. It is this mentality that defines Graham. He can't stand it when others don't do what they are supposed to do and that can cause issues. This is a bit of the tattletaler that is just an innate part of him. Now I get that.

So, why is he that way?

When Lynley and I left the building to go home we had to cross the parking lot. There was no traffic. About 30 feet away there was a crosswalk.

I took the time to make my way over to the crosswalk.

Lynley jay-walked.

I was completely frustrated by the fact that Lynley simply did not follow the rules and cut across the street.

We both looked at each other and laughed.

I am sorry son that you were cursed with yet another idiot-syncrasy of your dad's.

I promise to make up for it by helping you find your purpose. Until then, you may want to listen to your mom a little more often.

Tuesday, September 22, 2009

A New 3F8 Study for Neuroblastoma

I have received many questions regarding the new 3F8 antibody study that is being offered at several institutions throughout the United States. Currently the study "A Study of MAb-3F8 Plus Granulocyte-Macrophage Colony-Stimulating Factor (GM-CSF) Versus 13-cis-Retinoic in Primary Refractory Neuroblastoma Patients Acid (RA) Plus GM-CSF" is only being offered at 3 institutions (Phoenix Children's Hospital, University of Oklahoma Cancer Center, and The University of Texas M.D. Anderson Cancer Center in Houston), however, I would expect that number to grow over the coming months to as many as 15 institutions or more.

So, what does this mean to us?

While it is certainly exciting to hear that there is another antibody option available to our children, this one is for a very select group of patients. Secondly, it leaves me wondering, who this might be the "best" option for?

Let me explain.

First, this study is for primary refractory patients. The definition of this group is really the kicker. While it is not explicitly defined for this study in the listing on this typically means that this trial would only be available for children who did NOT have a complete remission from front line therapy. This would NOT include patients who achieved a remission and it would NOT include patients who have relapsed. (Two of the groups that would most like to use antibodies and with whom have shown benefit.) Unfortunately, this study is only for patients who have completed front line therapy but have not achieved a remission. This group is further restricted to patients that have evaluable disease or biopsy-proven stable disease in bone marrow by histology or MIBG scan with MIBG-positive disease confined to the bone or bone marrow. However, patients must NOT have measurable disease ≥ 1 cm assessed by CT or MRI. This actually makes good sense though. Solid tumor is unlikely to respond to antibody therapy.

Second, the next big issue to consider is that this is a randomized trial. You either get 3F8 antibody and GM-CSF or Accutane and GM-CSF. Big caveat. If you are a good candidate for antibody therapy, and you know it is effective, why would you enter into a trial with the opportunity to be randomized not to have it? The good news is that this is a crossover trial meaning that patients who do not respond to their assigned treatment after two cycles may "cross-over" to receive the alternate treatment. In other words, there is a good chance you will end up getting the antibody if you have not responded. However, you have to wait at least two rounds and you have to wonder how critical that loss of time will be to the overall goal of producing a remission and saving your child's life. Accutane is good and proven stuff. However, this situation is not known to be where it has been proven to work best. Disease load could be an issue.

I understand the purpose of the randomization to science. It is important. However, to patients, to our children on this trial today, it is not such a good thing and I can't help but wonder (in today's day and age) what I would do. I have to believe that if Sydney were in such a situation I would be more inclined to pursue a trial which would guarantee an antibody or I would be considering something else such as MIBG therapy before I took a shot at randomization.

I say this given two facts. First, there is a good chance that I could be guaranteed to get both Accutane and antibody through another study. I would look at options with ch14.18 and see if I could be eligible and if there is availability. Also, I would look at other options with 3F8. If they do not change the eligibility criteria of existing trials it may be worthwhile to consider high dose 3F8, Sloan's NK cell study or others which could lead to to standard antibody and Accutane therapy without having to gamble one or the other. Second, antibody therapy (most specifically ch14.18 but I also suspect 3F8) has been proven to work in these situations and has been proven to significantly increase survival.

I still can't help thinking.

Why gamble my purpose if I don't have to?

Monday, September 21, 2009

The International Martial Arts Classic

You have come a pretty long way from stage IV neuroblastoma when you compete in a legitimate Tae Kwon Do tournament. That is a huge milestone. I can't tell you how proud I am of both Sydney and Graham. Not only did the both do well but they also both did it with pride and confidence that I had not seen in them before. It was truly impressive.

Take one moment to think about it. You are a five year old little boy and a little nerdy like your Dad. You are sensitive and one of those genuinely kind hearted little boys. I do not know that I would go as far as to call you a teacher's pet but there is no doubt that you are in the running.

Now, let me take you into the middle of a large auditorium. You are surrounded by literally hundreds of people in the stands and you are the very first to perform your forms. That takes guts. You then follow that with two back to back bouts - one of which you win and another in which you come in a very close second to a little boy who is two belts above you in skill. I don't care how old you are. That is an accomplishment. I would have been afraid. I would been nervous. Heck, I was. But, not Graham. He was a trooper. He handled it with class and dignity. He did finally tear up when he realized he would be receiving a silver medal instead of the gold but, he had made it through the entire experience with courage and bravery. I honestly don't know that I would have been able to do it. As you might imagine, I am very proud.

Sydney was much the same. By outward appearance I could tell that she was a bit nervous, but from the un-twerp trained I she was able to completely master her domain. I hate to admit the fact that I missed seeing her perform her forms. In fact, nearly everyone did. She was on another mat across the gym and by the time we saw her stand up she was already receiving her gold medal. We felt horrible but were tremendously proud none the less. Her final scores would say enough. She scored two 9s and a 8.5 which were some of the highest scores of the day. Unfortunately, in sparing, she lost to the girl from Mexico that took the gold. However, she did do a pretty good job. The little girl from Mexico was a kicking machine and Sydney did her best to block. She did a wonderful job of keeping the scoring low, however, she had difficulty with breaking the pattern of the onslaught of kicks. Eventually a few landed that would ultimately cost her the match. However, she learned some important lessons in that match that will make her an even better competitor the next time. Remember Sydney, hop back, kick. You have to turn the tide. You have to get on the offensive.

Sydney also handled herself with incredible composure. There were no tears and no asking to quit. She kept plugging on. She kept fighting. She would eventually take a bronze medal in sparring but in my mind it was a gold. She beat her greatest demons and she learned that she can do just about anything she sets her mind to.

Think about her. A little girl. Diagnosed at 2 with stage IV neuroblastoma - one of the deadliest forms there is. That little body was abused by gallons of high dose chemotherapy, a stem cell transplant, a reactor full of radiation and years of oral chemotherapy and painful immunotherapy. In fact, up until her 8th birthday, she spent more of her life in treatment than out.

Two days ago, she received a gold and a bronze medal in an international tae kwon do tournament competing against kids that have never had to face any of those challenges. That is what I call an accomplishment.

We are so very blessed.

My purpii are meeting milestones that I don't know that I could have met. I am proud.

Friday, September 18, 2009

MIBG Therapy Video

Yesterday I came across this video on MIBG therapy. Although this presentation was not meant for parents of children with neuroblastoma or their caregivers it is a very solid overview of all that is MIBG therapy. It is definitely worth watching if you are considering MIBG therapy for your child. You will find some of the jargon in the video somewhat technical, however, it is worth the wait. By the end of the video (audio is also available) you will have a very good understanding of the therapy. In fact, you will probably know it better than most oncologists. It does a very good job of covering most aspects of the therapy. Not only will you walk out having a good understanding of how MIBG therapy works but he does an excellent job of covering the various options and what can be expected.

The information is presented by Ken DeSantes, M.D. from the University of Wisconsin School of Medicine and Public Health. The video can be found here:

Thursday, September 17, 2009

Surviving my diary entry

Good morning! So, judging by the email, I know some of you thought I may not survive yesterday's entry once my blushing bride laid her eyes up on it. However, you should also know that she chose to marry me of her own free will. Yes, I know many assume that I must have drugged her for the proposal and the year of our engagement but we did eventually get married and we have been so - nearly forever. Therfore, I submit to you that she has had sufficient opportunity to wisen up and realize the mistakes of her ways but has instead decided to stay married to me. Once you grasp that simple little fact it really should come as no surprise to you or her that I would write something like that in my diary. Plus, I am still a hot blooded husband and find my wife perfectly hot. Really, what else could be expected of me? She has been trained (some say brainwashed) but even she really expects no less of me.

Hence, the raised eyebrow being such an issue.

Now, onto new news. Today is a special day. This morning Lynley and I will be meeting with Graham's teacher to discuss the latest events. This meeting was our idea and we are hoping to get some insight into Graham's behavior. Graham must have known this was coming because he was trying to soften up the conversation with a blue sticker yesterday - a mark of excellent nice-atude. A green sticker is a sign of a well-behaved kiddo but a blue is a sign that he went above and beyond the ordinary. Honestly, it is a sticker which, before these incidents, was defined by Graham. This is all so confusing. I am hopeful we will learn something or see something which explains what is going on.

There you have it - two purpii and I am , once again, perfectly unscathed.

Wednesday, September 16, 2009

The Little c

Well, well, well. Sorry for my absence yesterday. Unfortunately, I was battling a server issue at our hosting facility which left me little time to write in my diary. The good news is that all is resolved and now I can happily get back to what is important.

You may notice from my title above that we have had a tiny cancer scare. It turns out that Lynley has a basal cell carcinoma on her forehead. I am sure most are aware but this is a fairly common type of skin cancer and it is highly curable. In fact, the most painful issue has not been the diagnosis but the waiting for answers. Even with experience and the hope of a pretty good outcome, the waiting does not get any easier. You always worry and fret over the worst - or at least we do. The diagnosis of basal cell carcinoma actually came as a relief. It wasn't as great as a diagnosis of nothing but it was better than many of the alternatives we can think of. Hence, the reason we call it the 'little' c.

So, where do we go from here? Well, Lynley has a few other appointments to schedule her procedure. Lynley will be having Mohs surgery which is a microscopically controlled procedure which is known to be tremendously effective in treating this type of skin cancer. It is essentially a method of ensuring that you get all of the cancer out surgically and that the surgeon has good margins. The cure rate using this procedure is roughly 99%.

The trick for Lynley is, of course, the fact that this blemish is on her forehead. It is a little less than a centimeter long and about a third as wide. It is small but still a sizable chunk to take out of your forehead. She would prefer not to have one eyebrow in a permanent lift. Frankly, I agree with her. I have enough trouble raising eyebrows around the house anyway. I doubt I could deal with the permanent look of disapproval. I have enough difficulty with the usual barrage that I earn on my very own. It is for this reason that she is already coordinating a plastic surgeon. I figure this is just another way for her to get a brow lift - as if she actually needs one. I tried to convince her that getting bigger breasts would also help distract people from looking at her forehead but she hasn't seemed to fall for that yet.

Regardless, that is where we are. Yes, it is cancer. But, it is the good kind for a change. We will take it. We know how to do it. We just keep putting one foot in front of the other.

It may be the little c but this is one of my big P.

Monday, September 14, 2009

Taking a Bite Out of the Ordinary

Wow! So, I don't know exactly how to say this. On Friday, I made my usual trek to pick up the kids at school. Nothing was too unusual there. When I got there, Graham and Ainsley were already waiting for me outside. Nothing unusual there either. Ainsley came running to me as fast as she could to jump in my arms. Still nothing unusual.

Graham on the other hand took his time. He walked very cautiously. Now this was certainly out of the ordinary. By the time he reached me, it was clear. The boy had received another yellow sticker.

This time his note read "Bit friend."

I would love to tell you that this was some funny joke. I would love to tell you that Graham had a silly story to go along with this that would make it all seem not nearly as bad.

I don't.

A boy was pulling Graham's shirt. Graham decided to bite him.

The good news in all of this was that no skin was broken and no one was hurt. It is difficult to tell but I think Graham was just using this as a warning bite, if that makes any sense whatsoever. As in, if you don't stop picking on me a will bite you. I don't know that it makes it any better but it may at least give us some insight into what is going on in his brain.

It is getting very old for me to keep saying how surprising this is. It does not seem right for me to say that Graham is unfailingly kind when I witness this type of behaviour. Kids that hit, kick, or bite are not your good kiddos. Those are not sweet little boys. Those are the kinds of things that mean little kids do.

The problem is that I still know that Graham is an incredibly conscientious child. In fact, every word that I have used to describe him is smack on. That is what makes this situation so difficult and so completely shocking and difficult to comprehend. Graham is not malicious. He is not trying to hurt others. But, why he is choosing to act out in these ways is still unclear.

At this point, our best guess is that this behaviour is attention getting. He is trying to make a name for himself. He is trying to get kids to play with him and he is trying to make lots of friends. The problem is that he does not have the social skills to know how to do that - clearly.

As you can imagine, he has had some pretty stiff punishment. Additionally, we have been working with him very hard throughout the weekend. Lynley and I have both role played with him and we are trying to get to the bottom of this and teach him the tools that we hope will lead him through this episode in his early life. Late Friday afternoon we requested a meeting with Mrs. Lewis (his teacher) to see if we can get any further information. I am hopeful we can meet with her early this week.

I still don't know what the answer is but I know we will get to the bottom of it.

That is what purpose is all about.

Friday, September 11, 2009

Purpose Divided

This diary is a funny thing. I always write about exactly what I am feeling and thinking. Sometimes those thoughts are about the antics of the rugrats. On other occasions, quite obviously, I have this deep seeded need to share what I learn about neuroblastoma and its treatment. In either case, the feedback I get from both parties, people who love hearing twerp stories and people looking for answers and insights into neuroblastoma, is extremely fulfilling. It seems as though, on any given day, I will receive anywhere from 5 to 20 messages about my diary entry through email or facebook. Obviously, on days where I ask a question or I talk about a controversial topic there is far more email, but, for the typical average day I can expect a pretty steady flow of email.

The email that I receive is generally very supportive. I very rarely get anything negative and those are limited to those that don't seem to appreciate my lack of institutional bias. The funny thing, however, is the polar division that seems to exist in the people that write to me. I don't know whether it is the case that for all that read this blog but I can tell you from the email I receive that the division is clear. People either like kiddo stories or they like neuroblastoma information. It seems everyday that I tell a funny story about the twerplets I will receive email telling me how much they appreciated the story and how I should write more kiddo stories. When I write about neuroblastoma topics I generally receive email from other parents (and some health care professionals) encouraging me to write more of those types of topics and thanking me for bringing those issues to light.

The good news, for me at least, is that a get great feedback from a very loyal group of readers everyday. It is because of that feedback that I feel motivated everyday to sit down in front of my computer and write. Whether it is through laughter or through the dissemination of some important information about neuroblastoma, I get the privilege of feeling like a make a difference everyday.

So, for that, I thank everyone who takes the time to share their thoughts with me. It makes my day.

Unfortunately, for those of you that enjoy my Sydney, Graham, and Ainsley stories, I will probably continue to poison your laughter and enjoyment with technical details about the treatment of a rare cancer called neuroblastoma. For those of you that enjoy my postings on all that is neuroblastoma you are going to unfortunately be burdened with interspersed silly nonsensical stories about my beloved gaggle of twerps.

I know, it just isn't fair. Here I get all of the reward and half of the time you are faced with either technical mumbo jumbo or ridiculous personal stories.

Thank you for putting up with me.

It gives my purpose strength.

Thursday, September 10, 2009

Purpose in a bubble

Yesterday, I met with a researcher that was working on lipoproteins in neuroblastoma. The idea is really simple enough. Lipoproteins are essentially tiny little fat bubbles that can be used to carry chemotherapy to tumors. Why do we care, you ask? Well, part of the problem that we all have in treating neuroblastoma (any cancer really) is the issue of toxicity. In fact, in most cases, toxicity is the factor that limits the amount of tumor we can kill and the amount of treatment our children can receive. You see, every time chemotherapy is given it has a very long journey to actually kill the neuroblastoma. It has to make it out of the bag, down the IV line, into the vein, through the body, and finally to the tumor. Sometimes, the chemotherapy even has to be metabolized by the liver before it becomes useful. The problem is that chemotherapy is not particular smart. It can effect everything it passes through. It can affect the heart, the liver, or just about anything in the body it passes. In fact, many of them can even hurt you on the way out as they are filtered by the kidneys. This is a major factor in most drugs that our children receive for treatment. We are only able to get so much of the potentially life saving drug because of the very real fear that any more would drug create significant damage to their little organs.

What if you could take all of these chemotherapies and put them in a bubble? What if this bubble could make it out of the bag, down the IV line, into a vein, and throughout the body without effecting a single organ? What if these bubbles had little magnets that could actually seek out tumors? What if it was the tumor that was the only thing that could pop the bubble and release the drug?

If this was the case we, would be able to spare a tremendous amount of toxicity. It is likely that we could even significantly increase the dose of drug given, increasing its efficacy. Just as importantly, we would be able to reduce, if not almost entirely obliterate, toxicity. That means no hearing loss with cisplatin and no heart damage with doxorubicin. Potentially, this could also mean less hematological toxicity leading to fewer transfusions, infections, and risks.

There are actually several versions of liposomes and lipoproteins in trial today. There is even a formulation with irinotecan that had great responses in adults which we have been trying to get into neuroblastoma for some time. There are several being tested with paclitaxel in adults and even a few with cisplatin. There is no doubt that this "bubble" technology is on its way.

While understanding the concept is pretty simple, actually doing it is quite another. It is no easy feat and it was this meeting that was on this very subject. Getting the drug into the bubble for the most part is pretty easy. That has been mastered with many lipophilic drug (drugs that dissolve in fat) The trick is keeping the bubble stable as it makes its journey, helping it find its target, and ensuring the tumor has the ability to pop the bubble. It was these topics in the framework of neuroblastoma that we discussed yesterday.

It was an interesting lunch and I think we both came out with some new ideas on how we could borrow from some of the successes seen with these types of drugs in other cancers and manipulate them to work well for children with neuroblastoma. The good news is that the technology is there. This can be done. The struggle will be in coming up with the funds to get research like this moved forward. I truly believe it to be a very large part of the future of chemotherapy.

It is another example of purpose in a bubble.

Wednesday, September 9, 2009

Another fake relapse?

Good morning! I am happy to report that yesterday went splendidly. There were no yellow stickers in school, all of our cats can account for their tails, and CPS did not come for me. That is a pretty good day in my book. I also wanted to thank everyone who wrote and offered help regarding the medical journal, Pediatric Blood and Cancer. It turns out that the head librarian at the medical school actually read my diary. Too funny. Well, it turns out that he was as surprised as I was to find out that they did not carry Pediatric Blood and Cancer. He said he would look into it. He was true to his word. Unfortunately, the subscription for the library is roughly $4500 per year and they are not able to justify the addition at this time. Go figure, I am not an employee or student. So, that means, for the time being, I am out of luck. Thankfully, I had several messages from many who read my blog offering to help me out with articles whenever I needed them. I genuinely appreciate the offers and I will take you up on them. In fact, I already have. I am currently reading over several articles as we speak.

One of the articles from this journal that was so graciously supplied to me was for my own selfish curiosity. It turns out that there was yet another case study of a child with osteoblastic lesions following therapy. You may remember that this was the very thing that happened to Sydney. Since her first relapse was never proven and her second is seemingly resolving itself on its own, it would lead someone to believe that something else must be at play. As we all know by now, neuroblastoma does not typically act that way. What if these "relapses" were something else? We know something has gone on in her legs. We just don't know what it is.

This is now the 5th or 6th documented case of these bony anomalies that I have seen. All of which have occurred in children that have had Accutane and monoclonal antibodies - either ch14.18 or 3F8. Some had treatment and some did not but all of the children have survived and they were never able to prove the existence of disease in any of them. No disease was ever identified by biopsy and none of the spots were ever verified by MIBG. The lesions showed up on bone scans and were usually confirmed by either CT, MRI or both.

I was hoping that this particular article would give me some more insight into what was occurring. However, like others I have read, there was little definitive information and much of it was speculatory. I am happy to see more cases, but I still wish there was something more definitive.

What is the moral of the story?

If your child has had Accutane and/or antibodies for treatment of neuroblastoma and presents with bone pain and osteoblastic lesions on bone scan, take a deep breath. Yes, these are signs of relapse but they are also a sign of this unknown condition. If these lesions can not be confirmed by MIBG or biopsy this may very well be a time for caution. I can not tell you when it is or is not an appropriate time to treat your child, but it may be something worthwhile to discuss with your doctor. There are now several published cases where children have had these symptoms and it has turned out not to be a relapse. In most cases the issues resolved on their own. Only enough, in many of these cases, they also reappeared in different parts of the body.
As I have said before, purpose is sometimes grey. Regardless, this does happen. Proceed carefully, you may end up with years of treatment that may have been unnecessary.

Purpose is not always crystal clear.

Tuesday, September 8, 2009

Kitty Cat Tails

Wow, a 3 day weekend and my kiddos made it through without much more than a hint of bickering. I am amazed at the change that has been brought about by school. It seems like the time that they are separated from each other at school is a good thing. What a loving wonderful gaggle of siblings. At the time I did not realize it. However, I now realize that it does seem logical that if they are not using there energies against each other they still have the capacity for evil. They still have the pent up energy. It still must go somewhere.

It makes sense enough now. I probably should have seen it coming. School brought harmony. That just meant they weren't using their powers against each other. Of course, that does not mean they lost there powers entirely. They just changed who they were using them on.

By Labor Day I was complacent. Happy kids. Happy wife. I will tell you, I was one happy Daddy. The kids had been spectacular all weekend. Incredible. The planets were aligned. I had been lulled into a false sense of security. As I sat while Sydney read a book to me, I heard silence from the ceiling above me head. I am clever. I knew that was potentially a bad thing. Kids and silence don't generally mix well. Thankfully, that was quickly followed by some footsteps and some giggles. Ah, I was back to relaxing. Graham and Ainsley were happily playing.

This went on for quite a while. I had become complacent. My kiddos, for all practical purposes, sounded perfectly. I was happy. Basking in the aura of a perfect family afternoon. After the next chapter in Sydney's book I decided to make my way upstairs. At the foot of the stairs I found a few globs of white hair.

Hmm. Is Boo, the cat, shedding? As I continued to make my way upstairs and into our room I continued to find little tufts of white hair. By the time I made it to our room I found Ainsley with Boo, cat tail in hand. Graham was nowhere to be found, but I would later find him hiding in the closet. I discovered that they had been pulling Boo around by his -hmmm - tail. Why they did it I still have not been able to figure out. They readily admit to doing it but, as most know, getting to the bottom of the question why? with a 4 or 5 year old can be elusive at best. I also never found an explanation for the tufts of hair. I can only imagine the worst.

It was the end of my perfect holiday weekend. As a lesson I decided to spend the next few minutes dragging the kiddos around by the ears. Yes, I received some rather disapproving looks from my wife and mother who was visiting. However, I wanted the kiddos to understand how it felt to be drug around by an appendage. I did not pull them hard but simply grasped them with enough pressure to make the experience uncomfortable. It did not take the long for them to decide that the kitty must not have liked it very much.

I am pretty sure Graham will never pull another kitty by its tail.

Ainsley, well, I am not to sure and I don't think I ever will be. She is definitely the difficult one to impress. Only tomorrow will tell.

Kids are like purpose. Complacency is never a good thing.

Friday, September 4, 2009

Pediatric Blood and Cancer pretty please

How come every article I want to read is in Pediatric Blood and Cancer and that is the one medical journal that my medical library does not carry? It drives me crazy and I simply can't stand it anymore. Every single time I see an abstract and think "Wow, this is interesting, I want to read more." or "Wow, this is interesting, I bet Joe Bob would love to read this." or "Gee, this is the exact issue that Billy Sue is having, I bet her parents would love to read this." it turns out to be in the journal Pediatric Blood and Cancer. Oh sure, I can beg my wife to call in 10 favors and get a hold of it for me but it just doesn't seem right. Furthermore at $29.95 an article I can't afford too many on my own much less to send to somebody else. FRUSTRATING!

So here I sit.


Yes, I could be smart. But no, I am stupid because I can't get to the holy grail of neuroblastoma medical articles.

(Hmm. Maybe this will motivate my wife to talk to the head librarian and talk them into a subscription to benefit all of the medical students that are studying pediatrics and to help Dr. Bowman who no doubtedly needs access to this journal.)

I am quite sure lives are at stake.

I know my sanity is.

I have no ammo for my purpose gun.

Thursday, September 3, 2009

What a kick in the backside.

Aargh! Yesterday, Graham came home with yet another yellow sticker. That makes 2. I was in complete and utter disbelief. Sure enough, the boy kicked another kindergartner in the hiney. Not hard, mind you, just enough to gain the attention of the teacher. This is a tough one for me. I really don't exactly know how to handle this situation. Here is my conundrum.

First, you should know, Graham is not doing this maliciously. That is not Graham style. These episodes are in jest - not anger. He is trying to be funny and, if he is anything like his dad, these are the first episodes in a lifetime journey of trying to identify what is funny and what is not. There is not a mean bone in Graham's body. This is simply a way for him to grab a little acceptance and to be cool in a world full of 5 year olds. He is trying to figure out how to fit in.

I have insight into this. I was exactly the same way. To tell you the truth, I think part of me struggles with this to this very day. There is something special about making people laugh. It is like a drug and there is no high better. I am serious. There is no greater gift than making one of the kiddos laugh in one of those deep guttural uncontrollable laughs. It is what life is all about. Humor is an incredible tool. Not only can it bring joy and laughter but it can also disarm tense situations, bring perspective and comfort, and even curb pain. Furthermore, I learned early on that acceptance amongst my peers could be achieved through making people laugh. It has been in the learning of what is and what is not appropriate that has been the challenge.

Graham is doing the exact same thing. He is trying to gain acceptance my making others laugh.

The question is how do I help him learn? I don't want him kicking or slapping other children in the hiney. However, I also don't want him to stop experimenting with humor. In this case, it is a fine line and I have to give him the tools to differentiate.

I have been very stern with him regarding these two incidents. He has been punished significantly. He knows that it is not appropriate behavior. I have also sat down and began to talk to him about his humor and what he is trying to achieve. I have been about as effective as I can be in talking to a 5 year old about the subtleties of a sense humor. It is no easy task. Let's be honest, at that age, comedy isn't subtle. We are on different levels. He is young. He still buys into the silliness of passing gas. I, on the other hand, gave that up weeks ago. (Please know that I am kidding. I don't do fart humor. I am married to Lynley. Do you think I could get away with that - and live?)

Bottom line, I want to help Graham through this learning experience. I don't want him doing what he is doing but I do want him to experiment. That is how you learn. I just have to figure out how to help him drawn the line between what could be funny and what is absolutely unacceptable.

Sometimes purpose is a kick in the behind.

Wednesday, September 2, 2009

Hooting with the owls

Good morning! Well, last night I was at the Texas Rangers double header and did not get home until roughly midnight. So, this morning, I am a bit tired and my clever meter does not seem to be registering. I suppose that is the price you pay for being out with the boys until late hours instead of at home with the family.

Last night was also Grammie's birthday dinner. We all had a great time at Macaroni Grill. This has been one of my favorite places because the kiddos seem to absolutely love it. I have learned over the years that, when it comes to dining out, the happier they are, the happier we are. Add on the fact that they all like the kid's macaroni and cheese and you have a true winner. With the twerplets, there is rarely a single place or meal that meets all of their needs. This however, fit the bill. My only complaint was that the portion sizes have appeared to shrink over the last 6 months or so. Oddly enough, the prices had not. Regardless, it was still a successful outing and Grammie seemed to have a wonderful time. By 7:30 they were all heading home and I was off to see the Rangers.

Well I had best be off. We have two canine guests staying with us and the kiddos are already up and playing with them. There is some corralling that is needed if we have any hope of getting to school on time this morning.

I am off to chase purpii.

Tuesday, September 1, 2009

What is the skinny on tandem tranplants in neuroblastoma?

I have been receiving a lot of email lately regarding the tandem transplant question in high risk neuroblastoma. While I can't blame anyone for having fear related to one transplant, much less two, I am seeing a higher degree of concern than I have in years past. Most of these discussions have focused on the toxicity related to the transplants. Parents often feel that if you have double the transplant you must also have double the risk. Fortunately, from published papers, that has not necessarily been the case. Regardless, I thought a more thorough discussion of why the COG is asking the tandem transplant question was worthwhile. There is a fairly large amount of science in this area. What does the research seem to indicate?

Not surprisingly there is actually some pretty strong data supporting the idea behind tandem transplants. First, the published data seems to indicate that the toxicity is tolerable. In other words, it does not seem to be adding much more toxicity than a single transplant. In fact, there is at least one study that actually seems to indicate that there is less toxicity. Go figure? While there is some somewhat long term data, a tandem transplant's effect in the long term (10, 20, 50 years) is relatively unknown. For that, we will have to wait and see. The main point to gain from all of the research is that while there is toxicity related to the second transplant it does not appear to double your risk.

From the standpoint of an increase in survival, the published studies seem to show a significant increase in survival. Now please realize that I say this also knowing that institutions like TXCCC went from tandem transplants back to single transplants because they did not see a difference in survival and, in their experience, saw an increase in toxicity. I have not seen that data published and only know that from personal communication. With that being said, the strongest published data still seems to indicate that a tandem transplant will increase survival. We just don't know if that will still hold true in a large randomized phase 3 trial such as the one being offered in the COG.

There have been some fairly decent sized studies that have looked into tandem transplants. While none are directly comparable to the current study offered by the COG they do offer some insight into the impact of the tandem transplant. In most cases the studies have included differing induction chemotherapy regimens, total body irradiation, and a difference in timing of local irradiation. However, one can make a strong argument that the difference in survival seen in these studies in probably due to the tandem transplant itself.

There are 3 published studies regarding tandem transplants that appear to be the most referenced. These are:

  • High-risk neuroblastoma treated with tandem autologous peripheral-blood stem cell-supported transplantation: long-term survival update. J Clin Oncol. 2006 Jun 20;24(18):2891-6.
  • Tandem high-dose chemotherapy and autologous stem cell rescue in patients over 1 year of age with stage 4 neuroblastoma. Bone Marrow Transplant. 2007 Jul;40(1):37-45.
  • Treatment of high-risk neuroblastoma with triple-tandem high-dose therapy and stem-cell rescue: results of the Chicago Pilot II Study.J Clin Oncol. 2002 May 1;20(9):2284-92.

The earliest work attempting to answer the question of whether a double transplant might improve survival used a double harvest/double graft approach with purged bone marrow support, with an OS rate of 32% at 5 years in a high-risk group of patients. In an analysis of 546 patients with advanced neuroblastoma from the European Bone Marrow Transplantation Solid Tumor Registry, a 5-year progression free survival (PFS) rate of 24% was reported for 436 patients who underwent a single procedure compared with 33% for 110 patients who underwent double mega-therapy. In the Chicago Pilot II study (mentioned above) in which 17 high-risk neuroblastoma patients were treated with triple-tandem cycles of high-dose therapy with peripheral blood stem cell rescue (PBSCR) and local irradiation, the 3-year PFS rate was 57%. In the long term survival study mentioned above, patients who underwent double high-dose therapy had a 3-year PFS rate from time of first transplantation of 61%, and 5- and 7-year PFS rates of 54% and 52%, respectively. For reference, the 3 year PFS for a single transplant was 34% in a large randomized phase 3 study in the COG. While a tandem transplant certainly appears to be better than the results of a single transplant, the question as to whether or not two transplants is significantly better than single transplant regimens still requires a larger, phase III randomized study to prove. This is the rationale behind this COG's randomized tandem transplant trial.

From the standpoint of these studies it certainly appears that a tandem transplant would be the way to go. However, it isn't as clear as it may seem. As I pointed out, there are some differences in the studies. Secondly, in these smaller studies with single institutions or small groups of hospitals it is impossible to rule out patient bias and other factors. Many of these studies were completed at institutions known for their superior patient care and expertise in this area. Could the quality of care provided at these institutions impact survival - possibly? All of these are reasons why it is important to ask the tandem transplant question in a randomized phase 3 trial. We simply do not know the answer for sure. We certainly hope it significantly increases survival but the bottom line is that we do not know. It could go either way.

Many parents ask - "If it were you, what would you want?" My answer is no different than theirs. I want my child to live. There is no answer. That is what is so important about this trial. Frankly, if my child were randomized to a single transplant I would be very happy that we would not have to subject her to the added risk of a second transplant. If she were randomized to 2 transplants I would be happy that she had a chance at increased survival. No matter which way we went you could bet that I would be able to find an adequate amount of research supporting our direction.

We don't know the answer. But, it is because of our children that others will.

I wish there was an answer for all of our purpii but, as of this point in time, either side of the coin could be a winner.