Lunch for a Cure Recipes Please!

Okay, you heard it here first. We need your recipes!

The Neuroblastoma Foundation has begun collecting recipes for its 2010 edition of its Lunch for a Cure Cookbook. The proceeds from the sale of this cookbook go to fund important neuroblastoma research. But first, we need to collect some incredible recipes.

I am asking you (yes you!) to donate a recipe in the name of a child with neuroblastoma.

It is simple:

1. Go to http://lunchforacure.org/recipe
2. Follow the directions.
   

Your recipe will be included in the 2010 Lunch for a Cure Cookbook. The funds from the sale of that cookbook will go towards funding an incredibly important clinical trial for children with neuroblastoma.

Additionally, every recipe given in honor or memory of a child with neuroblastoma will register that child (or family) with a chance to win a brand new Apple iPad. The drawing will be held on Thanksgiving Day, November 25, 2010.

Hurry, we only have a short time to collect the recipes.

It is just one recipe and a few minutes out of your life but your help will give a child just that - more life.

Please, donate a recipe to Lunch for a Cure and ask everyone you know to do the same.

Nein Farten

Lynley has a strict policy on passing gas. Don't do it - ever! I guess, since she has never done it (I believe that because I am a guy and I want to believe it), she has the right to have that opinion. While I agree with her, I take a far less militant approach. None the less, as we often do, we divide our parental responsibilities down by the sexes when it comes to things that appear to be dependent on sex.

And, as I have already established, I believe with all of my heart that only males do this.

I have come to like the policy of girls handle girls and boys handle boys as it seems that there are more girls problems than boy problems - at least in our household. It seems that girls have all kinds of issues and always need some kind of specialized talk. However, on the boys side it is a rare occasion and most issues can be solved with a couple of grunts and "dudes." As you would expect, on the topic of cheese cutting, I have been given the responsibility of head chef. It is my duty. I have to deal with the boy, my Dudester, and his apparent infatuation with flatulence.

One might argue that boys will be boys, however I can tell you, in this household, that simply won't fly. With Lynley in the ranks it is viewed not only as unacceptable but as an assault on the very fiber that holds the world together.

The problem is that Graham finds tremendous joy in his newly acquired skill. I somewhat remember from my childhood that "farting on demand" was quite a beacon of boyhood superiority. On top of that, I also seem to recall it being very funny. Of course, as a grown man, that has all changed but, before I commit to punishing my kiddos, I always try to view the world through their gas filled goggles.

Over the last few weeks there have been several complaints from the girls concerning Graham's gaseous attacks. Of course, according to Lynley law, I have stepped in quickly to correct the behavior. At first, I suggested that Graham should excuse himself from the room and, in the rare occasion in which it could not be controlled, he should say excuse me. Of course, now it seems that my son has a serious condition in which it can never be controlled (unless, of course, he needs to do it on demand) and tries to get away with it by following his thundering and toxic release with a pleasant "excuse me."

I always told you that Graham was the politest and kindest of the bunch.

Regardless, egged on by other boys at Tae Kwon Do last night, Graham contributed (if not led) to a rumbling stink out. The girls all came running to their mothers to complain and, for some reason, I received the disapproving look - as if it were my fault.

It is funny how everything bad that the kids do always seems to be my fault, but, that is not really the point.

Anyway, I took this opportunity to sit the boy on the bleachers and give him the best non farting speech I had. I brought as much drama as I possibly could to my dissertation on the inhibition of boyhood flatulence. Everyone was in tears - Graham because of my committed demeanor and, all of the women in the class, because of my over the top performance. In the end, it was Lynley who could not contain her laughter and completely undermined my authority on the subject of this public indecency. The next thing I knew everyone had a smile on their faces.

The problem is that I had it all within my grasp. I had Graham scared fartless, ready to commit to a life without gas until the women folk took all of the broken wind out of my sails.

And you know what, the next time he does it, guess who is going to get the disapproving look?

Yep, you guessed it.

Sometimes even all of the purpose is not enough.

Secret recipes and undercover work

Good morning! I apologize for not writing yesterday but I was hard at work and the time simply slipped by. You see, between you and I, I am working on my absolute favorite project. It is the one that I love to do - not the one that pays me to live. Regardless, don't tell anyone, but I am working on the updated Lunch for a Cure website and getting ready for this year's launch.

Again, don't tell anyone yet. But, what you can start doing is collecting your recipes. Yep, we brought back the cookbook and this year it is going to be better than ever. Now, everyone can submit their recipes online and, if you do so in the name of a child with neuroblastoma, your recipe may even win that child (or their family) a brand new iPad.

If all of that is not good enough, I even found a sponsor for the dream vacation to Walt Disney World. That means every $5 donation made to Lunch for a Cure in the name of a child with neuroblastoma will enter that child in a drawing to win the Walt Disney World Dream Vacation.

Hold on, it gets better. The Giving Trees are back. Each $5 donation in a child's name also earns that child an ornament on their very own Giving Tree. Once the the Giving Tree fills up, gifts start appearing under the tree, and, best yet, real gifts are sent to them in the mail.

Now, all of that is fine and dandy and I am sure enough motivation to get people to start giving up their lunches and donating their recipes but the thing that is most important to me is what the donations will be funding this year. We will be funding a trial which does two extremely important things. First, it will provide ch14.18 (yes, the same antibody that increased survival by 20%) to children with refractory and relapsed neuroblastoma. This is incredibly important because, right now, those kiddos have no way of getting this life-saving and cure-cementing drug. This alone, providing access to ch14,18, will save real lives right now. There is no greater impact than that. Secondly, the trial offers a new drug to be combined with the ch14.18 which is expected to make it work even better than ever. Best yet, it does not have the toxicities and issues seen with IL-2 or GM-CSF (other drugs given with ch14.18) and it appears to work even better. Best yet, it is already an FDA approved drug - meaning it is available to our kids and has little threat of disappearing like so many others have in the last few years. It will be this research though, that shows whether this drug is better and safer than what we have today.

Bottom line, this is the most important research project I have ever had the opportunity to help fund. It is huge. It is life saving and ,from a research standpoint, it will likely be one of the most important things that we are ever a part of. It is that meaningful.

There will be more to come.

In the meantime, get ready. In a day or so, we will be racing to collect recipes for the new cookbook. I am hoping that you will help me get the word out.

This is purpose like we have never seen before.

The reviews are in

At 8:25 sharp we dawned Mrs. Lewis' door. She was running a few minutes late with the parent before us. This gave us a few nervous moments to stand in the hallway. What would she say? Was Ainsley as far behind as we had been led to believe the previous year? Would she need tutoring?

After about 10 minutes we were invited into the class room. After a short prayer Mrs. Lewis began. For about five minutes she described a little girl with excellent manners and one who was always the first to help clean up or to perform a chore. She chronicled the life of a shy child who was always intent on doing her best and became shy and a bit withdrawn when she had not mastered a task.

After five minutes, I had had enough of this. I reached into my pocked and pulled out my cell phone. I then pulled up a picture of Ainsley. I handed the phone to Mrs. Lewis. "We are talking about Ainsley, right? The little girl in the picture there?"

This brought out a laugh from Mrs. Lewis. It turns out that she was ,in fact, talking about our Ainsley. While I still can't tell you that I completely understand it, she is a little angel in Mrs. Lewis class. We reviewed her work and found that while she did well in many areas it was the areas that she had not achieved mastery that were the most telling. It seems that Ainsley has a confidence problem (Yes, our Ainsley, my child) She seems to have difficulty getting started on new tasks and doubts her ability to accomplish them. The good news is that once you get her over that hurdle, she absolutely flourishes and beams with pride. I know, I know. It seems very strange for a child like mine. But, the good news is that it gives us something to work on with Ainsley. It is important to us. We want our kids to be confident.

We left our meeting with Mrs. Lewis feeling very good and extremely proud of Ainsley. Our next stop was Sydney's teacher, Mrs. Hart. I won't go into detail but suffice it to say that Sydney is doing wonderfully. She falls victim to two things, rushing her work and, believe it or not, a lack of confidence. While I can understand Sydney's lack of confidence, this is an area that we continually work on with her. She holds her self to a very high bar and when she does not achieve her goals (many times unrealistic ones) she beats herself up about it. Overall, her review of Sydney's work was outstanding. She is a smart little girl with an incredible heart. But, once again, we have a confidence problem.

Is it us? Is it genetics? I don't know although I will be the first to point out, if it were genetics, anyone that knows me knows that it could not possibly be my genetics. I am brimming with the stuff. So, it must be something else? Are we holding them to too high of standards? Are we creating this monster?

Again, I don't know. It just makes me wonder and I want to ensure that if it is something that I am doing (or we are doing) as a parent that I want to get it straightened out. My kiddos know they are deeply loved but do they really know how proud I am of them? Do I make as big a deal of their successes as I do of their failures? What can I do to be a better parent? How can I help them and get them to where I want them to be? I want them to believe that they can do and accomplish anything as long as they set their hearts and minds to it. How do I do that?

Graham's was our last teacher's meeting. He would have been the one that I would have seen as having the biggest confidence issue, however, he seems to be improving a lot this year. It seems that taekwondo is doing a lot to help him in that area. He is developing socially and he is doing wonderfully in school. Mrs. Wilson went to great links to explain the grading system and while I still can't tell you how he compares to anyone else I can tell you that he seems to be progressing well enough. It seems he is a smart little boy. Our scholastic goals for him are to further encourage his reading. It seems that the more he reads the better off he will be. He is right on track in building confidence. It is still an issue but we have seen tremendous improvement.

Well, enough is enough, it appears I have painted a pretty complete picture of the kiddos progress thus far. I am only as hopeful that I can progress as far as a parent for our next review.

I need to put my purpose to work.

Insight on the horizon

Good morning. Well, today marks a very nervous day for the twerplets. You see, they are off from school as this is parent/teacher conference day. Yep, we will meet with each of their teachers and discuss their progress in intimate detail (evil laugh). Worse yet, without a baby sitter they will have to sit quietly outside the classrooms while we meet which I am sure will only add to the tension. Yes, both Lynley and I demand to be present together for these meetings. We learned through the journey that is pediatric oncology that we both hear things differently and if we ever want to come to a mutually agreeable decision we both have to have the opportunity to hear information first hand and ask our own questions.

In other words, I like to be totally informed before she tells me what to do.

So, what are we expecting?

Well, you might think that we are expecting to hear good things regarding Sydney given the recent mastery on her 6 week report card. However, what you don't know is that in the last week Sydney has brought home a series of Cs on her math homework. In the end, we have resolved this issue. Frankly, she was rushing her work and not checking it thoroughly. A couple of parental drills later and we think she has fully grasped the importance of double checking. Cs bring with them a lot of extra work in this household. It is generally much easier to get an A in the first place because if you bring home anything less you will drill it until it has sunk in completely. Regardless, we know those recent scores will be a topic of conversation and I am sure that there are several other things that we are yet to become unaware of.

Graham and Ainsley are both up in the air. I anticipate good things in our discussion about Graham although I do expect his "sensitivity" to be an issue and the fact that he needs to be more "flexible", a topic. Afterall, it has been an ongoing subject since preschool. Although he has improved it still takes very little to ruffle Dudely's feathers. It will be interesting to get his new teacher's impression.

I don't know what to think about Ainsley. You may remember that last year's conference went about as poorly as can be expected. Her teacher failed her in every category of being a human, (much less a student) and offered no explanation or interpretation as to why she thought Ainsley scored so completely below the curve. This was a surprise to us as we have always viewed (and continue to) Ainsley as the sharpest tool in the tool bag. This is not to say our others are anything less that brilliant. Ainsley is just especially talented in her ability to learn. It will be interesting because I trust Mrs. Lewis to give us a pretty accurate picture of where she is scholastically. The good news is that regardless of what we hear, good or bad, I know that we will come out of this with a game plan.

Well I had best be off. Our meetings begin at 8:15 sharp and I am charged with getting a full day of work in before then.

Purpose is fast forward today.

Neuroblastoma prognostic factors - What matters?

After perusing the newly minted New England Journal of Medicine (NEJM) article, "Anti-GD2 Antibody with GM-CSF, Interleukin-2, and Isotretinoin for Neuroblastoma," I was reminded of my fascination (okay, obsession) with neuroblastoma prognostic factors. The article had an interesting discussion on the most recent revelations concerning the prognostic factors for children with high risk neuroblastoma and I once again found my mind wondering. What matters?

Throughout Sydney's treatment I had a morbid fascination with the statistics and an intense need to know everything about the factors that affected Sydney's prognosis. There were several occasions when medical experts commented on my obsession. "Why does it matter? You are already high risk? It wouldn't change anything therapeutically." But, would it? Even though I have great respect for the oncologists and researchers that gave me that response, I totally disagreed then and I still do today.

In one sense they were right. We were already on a high risk trial and whether or not she was NMYC amplified or diploid did not matter therapeutically. What they never considered was my willingness to jump ship on any trial at any moment if I believed another trial or treatment would be in her best interest. For example, today if Sydney was diagnosed with neuroblastoma and she had some significantly poor prognostic factors I might be more inclined to participate in a trial which included tandem transplants or offered the ability to move on to MIBG therapy if she was less than responsive. However, if she was high risk but had good prognostic factors, all things being considered, I might be more inclined to favor a trial aimed at reducing toxicity such as the one that includes Sodium Thiosulfate.

Later in Sydney's therapy it did turn out that Sydney's prognostic factors actually did impact treatment. We were far more aggressive with her relapse treatment and her prognosis played a large part of my personal decision. And the phase 1 vaccine trial that we participated in Houston, well, that decision was absolutely influenced by prognostic factors. We were more aggressive because of what we knew about Sydney's disease.

The fact is that prognostic factors can influence decisions and should. It is all risk. If the risk of death is higher then we are willing to take more risk to reverse that reality. You need to know what your risks are.

Prognostic factors matter!

So, with all of that being said. What did I learn about prognostic factors in the NEJM article. As expected, we found that the event-free survival was worse in patients with disease of INSS stage 4 than in patients with disease of INSS stage 2, 3, or 4S (P = 0.003). Interestingly, especially to me, diploidy, representing normal tumor-cell DNA index, was predictive of worse overall survival than hyperdiploidy (P = 0.007). Finally, a complete or very good partial response, as compared with a partial response, before autologous stem-cell transplantation was predictive of improved event-free survival (P = 0.04) and overall survival (P=0.02). Surprisingly, no other prognostic factors studied were predictive of outcome. Yes, even age, MCYN amplification, and tumor histology were not found to be statistically significant when comparing high risk patients. Although it is probably still worth pointing out that even though the results were not statistically significant the 2 year event free and overall survival statistics were higher for younger patients, non NMYC amplified patients and patients with favorable histology. I would bet money (in my non professional and non medically degreed opinion) that a higher number of patients and randomization based on the stratification of patients would have probably given this more power and shown these to be factors to be statistically significant.

So, are all of these rules hard and fast. Absolutely, not! But I have to argue that they can be an important influence in decision making. While I certainly would not let one of these factors influence my decision to accept anything less than the standard of care for high risk neuroblastoma, I would be lying if I did not say that they might influence my decision to do more.

Purpose can and should be influenced.

Are my kid's brilliant or not?

Back at home, things are pretty normal. Lynley is back from Anaheim and the kiddos are back in school. Last Friday did bring some good news though. All of the kiddos brought home their report cards. As always, I am extremely proud of Sydney bringing home yet another set of straight As. Somehow she even managed to bring home an 'E' for behavior and work ethic in one of her classes. Yes, this report card was as good as any one we have ever seen from her. Here is to hoping we can keep the streak alive.

Moving on. They changed 1st grade grading this year. No longer are they following the traditional A, B, C scale. They, too, have the massive list of skills similar to what we saw in kindergarten. Each skill is marked with a 1, 2, 3, or 4 indicating whether they have mastered independently, they are progressing, progressing with teacher assistance, or not progressing on each skill.

Let me be clear.

I despise this grading system. With a traditional scoring system I know exactly how they are doing in each scoring area for each period. However, while I am sure academics get great value out of knowing how each student is progressing on each individual skill they are working on it is absolutely useless to parents. I have no idea of how what they are working on relates to these specific skills. I have no idea if they are doing well or poorly. In fact, my only indication that they are not doing something would be a "not progressing" mark which would mean to me a complete failure (which, by the way, I don't believe any of my kids would ever fall into this particular situation without us knowing about it well before hand.) With this grading system there is no way for parents to know what areas they should be spending extra time on with their kiddos. Yes, we do have a nebulous list of tasks to complete or skills to acquire by the end of the year but how do I know whether they should be progressing, progressing with teacher assistance, or mastering on any given task. What is good? What is bad?

It is a ridiculous system and I hate it, hate it, hate it.

Is that clear? Perhaps a little over the top?

I don't care. It makes me mad.

So, regardless, Graham has a ton of progressing, and progressing with teacher assistance marks. I have no idea whether he is brilliant or an imbecile outside of my own observations. Thankfully a meeting with his teacher at the end of the week will hopefully clear that all up.

Ainsley? Well, Ainsley has an entirely other grading system. Hers is a page long list of skills with Xs and hashmarks. I have no idea where she stands either but at least I am use to seeing that grading system. I can compare it to Sydney and Graham's previous report cards to see how she compares. Yes, I know. It is all still very nebulous. The good news is that we will get to meet with Mrs. Lewis later this week as well. I will certainly have a better idea of where she stands than I did throughout all of last year but, keep in mind, Mrs. Lewis is an expert educator well studied in the art of avoiding my questions of how Ainsley compares to the rest of the students. However, I will come out of our meeting with some very concrete skills to work on with Ainsley. I know that and, while I hate the grading system, I also know Mrs. Lewis will lead us in the right direction.

So, there you have it. A complete report on the status of the kiddos education.

You feel totally informed?

Yeah, me neither.

I guess I will get back to purpose then.

Toxic thoughts on Anti-GD-2 antibody therapy

There were many interesting little nuggets of information that could be taken away from the New England Journal of Medicine article "Anti-GD2 Antibody with GM-CSF, Interleukin-2, and Isotretinoin for Neuroblastoma." Some of which was surprising (at least to me), but all of it was important for a child with neuroblastoma. From side effects and prognostic factors to survival curves there was something for everyone. Yes, there was even mention of a 20% increase in survival due to this regimen. But, there was also a treasure trove of other interesting factoids.

I think the things that caught my eye first were the side effects mentioned in the article abstract.

In the immunotherapy group, a total of 52% of patients had pain of grade 3, 4, or 5, and 23% and 25% of patients had capillary leak syndrome and hypersensitivity reactions, respectively.

Now, before I dig into this I have to disclose that I have a bias when it comes to antibody therapy. After watching my daughter go through 18 rounds of anti-GD2 antibody therapy, watching 100s of other children go through it and then having 7 years to reflect upon it, I have an opinion which is steeped in experience and tempered by time. So, before I share what I found interesting in this article you should know this, I believe in antibody therapy and if I had to make the decision to put Sydney through it all again, I would do it in a heart beat - and frankly so would she.

So, with that being said, let's begin.

I was absolutely amazed that only 52% of patients experienced grade 3, 4, or 5 pain. What you cannot read in the abstract is that they also found that grade 3, 4 or 5 pain was only experienced during 25% of 598 cycles of immunotherapy. Shocking! In my experience pain was almost universal and I would not enter this treatment with an expectation of anything less. Yes, I know what this phase 3 study results say. But still, I can also tell you that I have only seen intense pain not be a factor in one lone child receiving the ch14.18, as given in this study, and in children receiving 3F8 that had experienced a HAMA. So, if you have a child that is getting ready to enter antibody therapy, do not take my words lightly. Take my word for it. Your child will experience pain. It will be horrible. In fact, the first day may well be the worst day of your life. It is awful. Watching your child endure it is the stuff nightmares are made of.

But still, do it.

Now, here is the good news (and I mean this in the most heartfelt way possible coming from a dad that has been there), the child probably won't remember a darn thing unless they are older than 7 or 8. Yes, you child will end up being so drugged up they won't have any memory of the pain or the treatment. Unfortunately, for you, that is not the case. You get to live with the memories of the pain and agony for the rest of your life. But, I can also tell you this, the pain (your pain) fades over time. (Their pain ends with the infusion) In fact, you have probably been saying the whole time, I wish I could bear all of this treatment for my child. This is your opportunity. While you still can't do the treatment it is you that will have to carry the weight of the memory of the treatment for your child.

Sydney had antibody therapy from the age of 4 through age 6. She has no recollection of the pain and, in fact, she only remembers her time at Times Square, a few of her favorite nurses and the taste of the hard boiled egg that she would cherish every morning. The pain and the discomfort have all been lost and replaced by happier times. I should also point out that this seems fairly consistent with nearly everyone I have met.

The bottom-line is that you should prepare yourself for your child to endure pain. Be prepared to advocate for your child and to be on top of the pain meds. With the right mix of timing and morphine you can make this trip a far more pleasant one for your child. Again, the great news is that this treatment could likely prevent relapse and save your child's life and your child will have little or no memory of it.

The other side effect that shocked me a bit was that of capillary leak syndrome. A quarter of patients seems about right. I had always attributed it to the use of the world's nastiest drug, IL-2 (my non-medically trained opinion). However, while it occurred more frequently during cycles 2 and 4, which involved IL-2, with incidences of 11% and 13%, respectively, it also occurred in cycles 1, 3, and 5 during courses involving GM-CSF (incidences of 3 to 7%).

This trend was found with hypersensitivity reactions as well. Grade 3 or 4 hypersensitivity reactions were reported in 25% of patients, during 15% of immunotherapy cycles. Hypersensitivity reactions were more frequent during the two cycles involving interleukin-2, with incidences of 26% and 25%, as compared with 5 to 12% during the three cycles involving GM-CSF (P = 0.001). Such reactions may be attributable to symptoms and signs that reflect both toxic effects of interleukin-2 and antibody-related hypersensitivity.

Finally, the side effect of fever was the other thing that shocked me. Only 39% of patients experienced fever. Again, my experience is that fever is universal in rounds that include IL-2. In fact, I have never heard of a child not experiencing high fevers with the use of IL-2. I, honestly thought 103 and 104 degree fevers were universal and I seriously draw that statistic into question. In short, I would not be surprised when I saw my child experience a high fever during IL-2 treatment.

Several times throughout the article they mention how this regimen was associated with important treatment-related clinical toxic effects. As much as I felt that the incidence of side effects was far less than I had perceived I was surprised by how much worse the article made the side effects seem. Yes, there was pain, some capillary leak syndrome and hypersensitivity reactions. However, compared to the toxicity of chemotherapy or radiation it was a walk in the park. There is no hearing loss, no cardiotoxicity, no mountains of lifelong toxicities to look forward to. In comparison to everything our children had faced up to this point it seemed almost not even worth mentioning. (although I know they had to).

In short, I was surprised that there were not more toxic effects than there were. I expected them to impact far more patients than they apparently did. However, I was also surprised by the discussion of the toxicities. To me, the article made them sound much worse than they really were. Regardless, I think the article continues to make an incredible argument for the importance of antibody therapy.

Nobody ever said that raising the survival curve by 20% would be easy, just be glad that, for your child, it will not be memorable.

More purpose to come.

A clear case of paternal discrimination

Good morning! Well, the thing you probably don't know about the Dungan clan is the fact that everyone in the family with any "apparent" degree of responsibility is out of town. Yep, since Tuesday, Lynley has been in Anaheim at Educause, a convention for double sided nerds (nerds who love both education and technology - a wicked and dedicated combination) This has left me to navigate the twerplets through the cruel cold world for a few days on my very own. Lynley will not be back until Friday night.

Of course, Lynley has left me a plethora of lists. I find that very interesting. I don't remember leaving her a single list when I leave town. Yet, here I find myself with a cupboard wall filled with reminders and instructions. I look at them and all I can think is "how degrading." How could she possibly think that I would not remember all of this stuff?

I think the next time, I will have to leave her lists on how to do laundry, make breakfasts, dinners every other night, operate the dishwasher, how to remove dishes from the dishwasher (trust me, she needs that), clean the dishes, how to take out the trash, get the kid's dressed in the morning, how to take them to school, how to pick them up, how to back flush the pool, how to empty the debris from the Polaris, and anything else I can think of.

I find it all very interesting. Am I really perceived as being that out of touch that I need instructions on how to feed the dogs?

And another thing, at all of our usual haunts, everyone I talk to seems to know that I am "baching" it. Apparently, they were told to keep an eye on us. There are spies everywhere. Did I comb their hair? Do their socks match? How ragged to we look?

Aargh! Absolutely, disappointingly, incredible!

Are men really eyed as being this incompetent? Are we really so wrapped up into work that we can't care for our families without lists and instructions?

What has the world come to?

Although, I must admit, it is food for thought. And if I was one of these fathers, is that who I'd want to be? Would I want to be that out of touch? That disengaged?

I can't answer that question for anyone else but I, for one, don't. And I take great offense to this clear case of sexual paternal discrimination.

If I had a bra I would unburn it.

Now, I am going to go into the kitchen and make lunches. And hear this, I might even use a cookie cutter to make little hearts out of their sandwiches.

I've got maternal game. Bring it on!

I've got purpose yes I do, I've got purpose how about you?

Anti-GD2 Antibody with GM-CSF, Interleukin-2, and Isotretinoin for Neuroblastoma

On September 30, 2010 an incredibly important article for children with neuroblastoma was finally published in the New England Journal of Medicine. It was published nearly a year and a half after the safety monitoring committee determined that the study met the criteria for early stopping of the randomization, on the basis of the superiority of immunotherapy over standard therapy with regard to event-free survival for children with high risk neuroblastoma. I have anticipated the publishing of this article with greater fervor than many others as Sydney (yes, our very own super hero) was part of this study. She was a data point back in 2004.

Yes, a long time in coming for such an important piece of information.

The bottom-line of this article is the fact that a phase 3 trial (the gold standard for pediatric cancer research) showed that immunotherapy with ch14.18, GM-CSF, and interleukin-2 was associated with a significantly improved outcome as compared with standard therapy in patients
with high-risk neuroblastoma. More specifically, it showed a 2 year 20% increase in event free survival (66±5% vs. 46±5% at 2 years, P = 0.01) for children that received immunotherapy with this combination of drugs. It is also important to mention that it also showed an 11% increase in 2 year overall survival (86±4% vs. 75±5% at 2 years, P = 0.02 without adjustment for interim analyses) although this latter statistic had yet to meet the criteria to be considered statistically significant at the time of study stoppage.

I could literally write for weeks about interesting findings in this article. In my mind, it was literally chock full. As expected, it delivered on a thorough discussion of survival as it related to treatment both with and without immunotherapy, but it also included some incredibly interesting information on prognostic factors. As one would anticipate it also delivered on a thorough discussion regarding the toxicity of immunotherapy. Ironically this differed significantly from my perception, even given the 100s of kiddos that I have seen endure immunotherapy. It was funny in that I felt that the reported number of side effects were far less than I had anticipated and, yet, the description of those side effects was far worse than I expected. This all warrants further discussion and much more time and space than I can encompass in one blog entry. For that reason, over the next few weeks, I will plan on discussing several of these items in greater detail in their very own dedicated entries.

In the meantime, this is one of those articles that are worth the read. It should solidify your opinion that antibody therapy is the right way to go, it should give you some interesting insight into prognosis, and it should prepare you for what you need to watch out for when your child is undergoing antibody therapy.

This is proven purpose.

An ingrown hair on an elephant's butt

I was so very proud of my kiddos this weekend. They did extremely well at the tae kwon do tournament. In fact, in many ways, this was the best that I had ever seen them. Both came back from significant deficits to win their matches. On the way home, I was absolutely stoked.

"You all did so great today!"

"I have never been more proud."

"Dudely (Graham) you did such an incredible job. I was so proud of the way that you fought your gold medal match."

Graham beat a little boy, 29 -27, overcoming a 4 point deficit in the last 30 seconds. He had fought a boy whom he had lost to by 11-1 at Regionals last year. It was a huge accomplishment for him. In all honesty, the boy he was sparring had better technique but, today, Graham had better instinct. In the second round a shot sent him flying backwards and also had the unfortunate effect of slamming his head onto the ground. This stunned him and allowed his opponent to take the lead. Somehow Graham was able to regain his composure. For those of you interested in seeing a 6 year old gold medal match, I have posted it on YouTube below.



Sydney's day was good as well. After dominating in forms and receiving a gold medal, she was on to sparring. You never know what you are going to get in sparring and, unfortunately, Sydney drew a bevy of girls that all towered above her. In fact, the closest to her size towered over her by about 6 inches. Height is a huge advantage in Tae Kwon Do and Sydney would be fighting from a huge deficit and and leaping over an equally massive mental hurdle. Sydney fought hard to make it to finals. In her first match she even overcame a 5-0 deficit to win the match. This was huge for Sydney and I was so proud of her for not giving up against her massive opponents and maintaining control of her mental state. Normally she would have beaten herself before the match had even begun. Her gold medal match was against the jolly green giant, a black girl who towered over her by about a foot. Sydney stayed in the match and kept it close but was simply unable to get adequate scoring in. Every time she got in a scorable distance she was already well within her opponents reach. In the end, she would get the silver medal but we were incredibly proud. She did well for sparring such a giant and I think she learned a lot. Over the next few months we will be honing the skills necessary to overcome such height deficits. Essentially, she just needs to become faster and anticipate more. This is what I had to say to her on the way home:

"I am so incredibly proud of you, you little dude-ette!"

Sydney: "Thank you, Daddy."

Graham: "Dad, you just called her an ingrown hair on an elephant's butt."

For the life of me, I don't know where the boy learned it., but, I googled it and found it in the urban dictionary:

dudet: an ingrown hair on an elephant's butt.

I was unable to verify this in Webster's dictionary or another credible source but it is something I will never forget. And, for the time being, I guess I will have to find another term to describe my daughter's supreme dude-liness on the mat.

Oh, what a weekend.

Well, I had best be off. The kiddos are out of school for Columbus Day and any work that I am going to get accomplished must come this morning.

I had better get my nose to the grindstone so that I can afford to focus on my purpose.

A co-working addition

Well, it seems that the world did not slow down while I was out of town. In fact, it seems like things only sped up. That is what a few days away from our lives will do. I wasn't home for a full day before Lynley found a kitten at work that she thought desperately needed saving. When it comes to Lynley and animals "found" can be a pretty relative term. Although she claims to have people that witnessed her save the cat from abandonment and certain demise, the kids and I know her to well. Lynley "finds" animals like she finds an item on sale. You see, in her mind, if she purchases and item with my credit card, then she purchase it on sale - after all, it cost her less. Ainsley, Graham, Sydney and I would not put it past her to have "found" this cat in a box with a sign that said "kittens for sale" or "free to good home." She also may have "found" this cat at the pet store or at the humane society. Who knows, someone at work may have even had a litter of kittens. After all, she did say she "found" it at work.

While it may all sound very suspicious that Lynley "found" the long-haired orange and white kitten that she has wanted all of her life, it doesn't change a thing. It may go over better if she saved the kitty cat. She may get less resistance from her grumpy old husband that way. But still, it won't change the fact that none of us have any say in the matter. We now have another mouth to feed. I guess I can look at the bright side. I read an article on the plane flight home that stated that co-working can make you far more productive in a home office. Perhaps, the fact that Lynley's newest addition is cuddled up by my side on the couch will help me get through the mountain of work piled up my desk more efficiently.

Drupal - the "found", co-working kitten

Yeah, I doubt it to, But, really, you know Lynley, what am I going to do about it.

If you thought a new kitten was the only new happening you would be sorely mistaken. The kiddos are all busy with school projects and, if that were not enough, we have a major Tae Kwon Do tournament on Saturday. The kiddos will be competing in the 30th Annual Ft. Worth International Taekwondo Championships at the Fort Worth Convention Center. While it sounds like a local tournament this is actually one of the bigger tournaments of the year. We will see competitors from all over and from what I understand there is a large international contingent. In the past this tournament has brought together 1000s of competitors. It will be a great experience for Graham and Sydney and a lesson in patience for Ainsley who will have a full and complete day of self entertaining.

Well I had best be off. We are stepping into a 3 day weekend with the kiddos and after almost a full week away I have a ton of catch up to do. Thank goodness I have this whole co-working thing to help me make it through.

Perhaps it will double my purpose.

Horribly sad exit

Long time, no write. Well, I am back in Fort Worth although I can not tell you that leaving was an easy thing to do. While Grammie is doing better than she was when I had arrived, she is still far from recovery. In fact, in some ways we took steps back instead of forward. The good news is that her head is healing. Her staples have all been removed and the only vestage of a head injury is a scab which is about to fall off. The damage inside is more difficult to visualize but based on her return (the number of body functions and abilities she had that she has regained) I have to think she is recovering there as well.

The trouble for Grammie has been back pain from a compression fracture on her spine. It started to decline the day before I arrived in Carlinville and only seemed to get worse from there. Just like with a kiddo, the difficulty was in assessing how much pain she truly had. In her post fall fog one has to wonder how much pain is reality and how much is for effect. I mean no disrepsect with this statement but it is something that must be surmised because the treatment of the pain will have a significant effect on the length of time that it will take her to recover. It could even jeapordize her ability to recover at all. You see, the more we mask her pain with narcotics the less she will improve. In fact, she will likely decline in the short term. She will not be able to do the things she needs to recover in a drug induced fog.

I first began to question the intensity of her pain in earnest on Monday morning as she met with the speech therapist. When asked she described her pain as a 10 on a scale of 1 to 10. While I have no doubt that she was enduring pain, I would expect her to be doubling over in pain if that were the case. Instead she sat quietly and politely. There was no wincing, no grimacing, no outward sign of pain. It just did not seem to add up. My concerns were bolstered as I watched her talk to others. One moment she would tell people she was in extreme pain and a few minutes later she would tell me she was groggy but so thankful she was out of pain.

In the end, no one wants her to be in pain and, whether we like it or not, she is now under some pretty strong narcotics. They are in the process of dialing them back to achieve some balance of pain relief and sanity but anyone that has been there before knows, that is a fine line.

The funny thing is that this is all just a mask for a problem which we are yet to deal with. Blame it on what you want but the big problem to me is that we have not dealt with the source of the pain. We have been trying to get a procedure scheduled for her which could alleviate the pain almost immediately but due to a variety of factors we just haven't been able to get the ball rolling. It is frustrating. I am hopeful that with Grammie's physician back in town we will see this move forward quickly. At the very least, we need to be discussing this procedure and that is yet to happen.

I hate to wait. I did not like it in pediatric oncology and I don't like it here. The problem is that in pediatrics the answer was never much more than a day away at worst (other than scan results) but here I am going on the better part of a week and feel like I have no answers. It is not that I think her physician is bad or unresponsive. It is just the system.

It sucks.

Bottom line, I hated to leave her. I did not want her to have to suffer alone and it brought tears to my eyes to walk out yesterday afternoon. I had to get home to watch the kiddos as Lynley prepares to leave town.

It is just not fair. I wish I could bring Grammie here were she could be close to us but I know that is nearly impossible.

Once again, I find myself with plenty of purpose but no answers.

Detour

Good morning! So I am reporting live from Carlinville, IL instead of my home base with the twerplets in Fort Worth. I left early Saturday morning to come up and visit with Grammie. Today begins the tougher work though. I need to meet with the physicians to make sure we are moving along the right path or whether we need to seek more specialized care. So far, Grammie has visited several hospitals and is currently residing in an assisted living center. At the center she is receiving the highest level of care they provide, however, it is my job to figure out if the is enough.

You may remember that a few weeks back Grammie fell on her back porch while trying to get back into her house. Her shirt caught on the door. Well, one think led to another and her skull was cracked open on the concrete. Thankfully, she was just coming in from spending some time with her friends and they witnessed the fall. We can all thank them because without their quick action it is likely should would not be here today.

The good news about the fall was that 14 staples later and a little bruising she was expected to make a full recovery. There was some injury to the brain but, again, she was expected to make a full recovery. Unfortunately, though, this lead to a series of TIAs (somewhat like a mini stroke). All fully recoverable in and of themselves they were not that bad. However, they can also be the sign of an impending severe stroke. The trick is finding the source of the TIAs and treating them before they turn into a full blown stroke.

One of the tings you can do after a TIA is begin the process of thinning the blood in an effort to prevent a stroke or further ITAs. This usually comes in the form of drugs like Aspirin, Plavix or Aggrenox. The problem in Grammie's case is the fact that she head brain injury and until that heals we don't want to add drugs into the mix that can cause bleeding.

So, she is kind of riding a double-edged sword and we are hoping that here head will recover and give us enough time to treat to prevent stroke. Now, the good news is that she has not had a TIA since I arrived. However, that does not mean we are safe. We need to get an assessment of where she is and identify whether or not we can begin treating. The other good news is that CTs (last one is now over a week old) do not seems to indicate any specific problems.

So, there you have it. That is what I am here to do. Is she getting the treatment she needs here. Does she need to go through the stress of a temporary move to a major center with specialty in geriatrics and stroke?

There aren't easy answers. While my gut tells me to get her into the hands of the experts I also know that means removing her from a support system of family and friends where she is relatively at peace.

I don't know the answer but I hope to get to the bottom of some today.

This is purpose, I can do this.

Dudely Breaking Boards

Graham breaking a board with a 360 roundhouse at his belt test.



Mean purpose, isn't it?