Money, Money, Money

I'm once again lurking on a support listserv related to neuroblastoma at The Association of Cancer Online Resources (ACOR). There has been a recent flurry of emails about fund-raising for pediatric cancer research. I'm not quite prepared to go into my conflicted and complex views of how money should be distributed by the government or large, national non-profit organizations like the American Cancer Society. I'm personally struggling on that front with how to balance my own emotional closeness to the topic versus the logistics of how to distribute money given disease mortality, frequency of occurrence, age at which disease typical emerges, and etc.

What has become obvious to me though is that given how money is currently distributed for research for various cancers, the rarity of pediatric cancers and perception that pediatric-cancer=leukemia=treatable puts pediatric cancer funding pretty low on the totem pole. If the big, national organizations aren't cutting it, who is leading the charge for raising money for kids with cancer? Quite clearly it is parents of kids with cancer or parents that have lost children to one of these monstrous diseases. I have not had the strength to be part of the lead in this charge. I'm not sure I ever will. I have much respect for those who find it. In some cases I'm sure it is a form of self-therapy, but it is more than that as well. It is a burden. A huge burden. The burden on parents with children sick with any serious or chronic illness is terrible, and to throw in the burden of legitimately (at least in my estimation) feeling like it is not only your responsibility to fight to get your own kid better but that you have to be fighting to find a cure for all the kids is really just insane. This is how it works though. I guess it is just one of those harsh realities. The people out there fighting for funding and for a cure are those that have been "touched" (or punched or however you want to look at it). I wish this would change, but I doubt it will. These poor kids and families have it all stacked against them. If the burden falls on those that have been stricken with this, and getting stricken with this is "rare" in comparison to adult cancers, then the progress is inevitably going to be slow. A lot of these incredible kids and families don't have time for slow and steady progress.

Kudos to those families and friends of sick kids that get out there and fight so hard to make a real difference.


A Lion in the House

Google allows you to subscribe through an RSS or Atom feed to searches of news sources. I subscribe to several different search criteria associated with neuroblastoma or childhood/pediatric cancer. I was surprised to see an article about the Nashville Film Festival pop up in one of my feeds. It seemed even stranger when the small blurb I was presented looked like this.
Nashville Scene, USA - 1 hour ago
... That Hungarian stoner comedy or four-hour pediatric-cancer documentary will be something ... journeys too are a sort of crossing over, from childhood into adulthood ...
Further review of the article revealed this blurb about a documentary about pediatric cancer. I'm not sure where I've been hiding, but I really knew nothing about this film.
A LION IN THE HOUSE (1:15 p.m.) Simply put, Steven Bognar and Julia Reichert’s devastating documentary is one of the two or three best movies in the entire festival, perhaps even this year—although its unflinching portrait of children fighting cancer over a six-year period in the Cincinnati Children’s Hospital is something any parent will dread. Themselves parents of a cancer survivor, the filmmakers document an agonizing cycle of fragile hopes, new treatments, temporary remissions and terrifying relapses: parents age and children wither over the course of the film’s gripping four hours. And yet the overall impact is cathartic rather than depressing, in keeping with the Isak Dinesen quote that provides the film’s title—which says that you don’t know what it’s like to be alive until you’ve lived with lions. Kudos to the filmmakers and to the unimaginably brave kids and parents who gave them permission to film—some of whom will reportedly attend the screening. —J.R.
I tend to think that I do not want to see this film. I suppose I'll be torn on it. On one hand I'm very curious about how the lives of cancer families are portrayed in such a "devastating documentary". On the other hand, my family lives the life and devastation of pediatric cancer. I don't really need a four-hour on-screen dose of it. I'm pleased that this subject is getting this type of attention and I really hope that it is done and received well. We'll see if I ever work up the desire to make a judgement on that myself.

Interview with the filmakers


Too Funny

I'm playing with tagging for Technorati. I tagged my last post with "pediatric cancer" and followed the link to see what Tecnhorati came back with. I got a real chuckle out of one of the tag-targeted ads that was presented. If I didn't already have me some pediatric cancer in the family, I might just be tempted by these "bargain prices".

- Bargain Prices Shop fast, Buy smart, Shopzilla for Pediatric Cancer at over 50,000 online stores. Every product from every store means you get a Bargain Price. Don't just shop, Shopzilla. www.shopzilla.com

Cancer Registry Data Made Public

A Carbondale, Illinois newspaper, The Southern Illinoisan, engaged in an eight-plus year court battle to obtain cancer registry data related to neuroblastoma cases in areas in Southern Illinois. I have only looked into this briefly but it appears that after the families of four neuroblastoma children from Taylorville, Illinois were awarded a multi-million dollar settlement in civil suit in 1998. That suit apparently claimed that the NB cases were caused by a coal tar cleanup at in 1988. I couldn't find very much information on that case in a very quick search except for references to that case in news stories about the release of registry data. A reference does get made to the case, with no real detail, in Taylorville's Wikipedia entry. The recrods released were limited for a period of 1986 to 1997 and the newspaper is apparently now going after current data from the registry.

I'm a little torn on this. I'm okay with the thought that cancer can occur because of environmental factors but that it can also occur randomly. If there is data to suggest that environmental factors related to the types of activities that occured in Taylorville (5 cases listed in a town with a total population of 11,427 as of the 2000 census. By comparison, Chicago area zip codes accounted for 87 cases during the timespan the newspaper originally requested) can cause neuroblastoma, then the general public should be made aware, or at the very least scientists and health officials should looking closer at these possible connections. My son is on the registry and I'm a bit embarrased to admit that I don't know too much about its purpose, although I always assumed that it had something to do with acquiring large enough samples of tumor tissue and etc for laboratory testing and trials and also to be able to statistically analyze trend based on various factors such as location, family heatlh history, etc. Shouldn't our public health system be doing this type of analysis? Are they? Why does a newspaper feel that they need access to the information to do this research? Are they in it for the sensational story alone? Or is there real evidence that our public health systems don't use the registry to perform this type of analysis? I guess I need to do some more research of my own.

The State resisted making the records public. I have worked for various state agencies as a consultant and while in my experiences they generally want to make information available to the public, there is also this wariness of the "slippery slope". They fear if it is too easy then they will (a) get overburdened by responding to information requests and (2) that they may lose the ability to keep some information from the public based on their "professional judgement" or the privacy of their customers. The articles I read this morning seem to suggest that the biggest argument against giving up the information is patient privacy. Patient privacy is a serious issue and it is probably a bigger issue for adults on the registry than for kids. I'm sure that there are some families that keep their children's health information very close and private, but in my experience with other neuroblastoma families, it is pretty easy to find at the very least basic information about the kids and their health. Nathan's name, where he lives, the basics about his treatment, and a bunch of other information could probably be found just by pulling information from various web-based tools we have used to keep friends and family members informed about his condition. If these papers wanted to work hard enough they could likely find the bulk of the NB kids in a given area, especially in smaller communities like those found in Southern Illinois. Given the registry data, it will be very easy for them to find out the names and other information of those on the registry. This really doesn't bother me too much as a parent with a child on the cancer registry. Anyone could pretty easily find Nathan if they were looking for neuroblastoma kids in our area. As an adult on the registry, I might be much more concerned about my privacy. Nathan as an adult might be much more concerned about his privacy than we are now.

I thought I would have a stronger opinion about all of this by the time I wrote out my thoughts, but I don't. I'm very interested in the possibility of clusters. I believe that they can exist, but I personally doubt that neuroblastoma cases will ever found to be primarily in these "clusters". I'm also interested in the privacy concerns over making cancer registry data public. I think that independend researchers have probably often been better and more efficient than public resources at evaluating data and trends and that there could be real value to allowing this information out in some form or other. I think we need to be very careful of the privacy of the people on the registry though, even though I'm not terribly concerned about that from my own family's standpoint.

(Special thanks to my legal expert, Jim B., for tracking down the link to the supreme court case.)

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Fear and Trembling in Colorado Springs

Part of the life of any parent is irrational fear and over-reaction in regard to your children's well-being. If you are a parent, you know what I mean and of course there are obviously varying degrees of this for everyone. If you are a cancer parent, you know that this reaction is amplified by roughly 1000 times for your non-cancer kids and 10,000 for your cancer kid. In an otherwise good but draining weekend there were a few moments of awful fear thrown in. Nathan has had a bit of a cold, or his allergies (which have been off the hook since he started chemotherapy in 2003) have been in hyperdrive. His nose has been even more of a fount of snot and he has had a cough. We handle this well. We know his sinuses are perpetually full (after all, we do CT his head every three months) and this is pretty much normal for him. On the way home from church though he started to panic because "his head hurt" and his "stomach and something else hurt". What else hurt? I asked and he couldn't explain but pointed to his throat. So I asked if his throat hurt and he said no. He often complains about his throat before he has problems with vomiting so I asked about that and he said he didn't need to throw up. He also got all red and was complaining about being hot. I cooled the van down and he calmed down eventually and then just sat and rested on the couch all afternoon and didn't really complain any more. Now I know that he is feeling crummy and that his sinuses are full and he likely just got a normal headache. But I was terrified at the time that it was much worse. It doesn't help that he has a similar emotional response to mine. If he knows it is coming, he can handle pain orders of magnitude beyond which I have ever experienced. If he is surprised by it, he just breaks down and I can understand why he would react that way. This morning Susan said he was limping after he got off the couch. Ugh. Limping is a big one for us. That was one of his major symptoms at diagnosis. I'm pretty sure his leg fell asleep on him, and that is how he explained it to me. He was laughing about it later in the morning, so I'm pretty sure that is what happened or else he would have been concerned himself.

So I'll try and shake my fear, but I'm sure it will come back in brief waves until we get a couple of "normal" days in a row out of him.


Borrowed Words

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell."

-Lance Armstrong

(I like this post title because it is self-referential in that I have borrowed the title from my brother.)


April Fools

Three years ago today Nathan was in too much pain to walk and was diagnosed with neuroblastoma. I'm so very happy that I could snap this picture of him pulling his sister in a wagon today.