Leo's Fund

Background

• The on-line cancer community, including treatment and informational web sites, blogs, etc. is gigantic. Searching for information is simple, but knowing whom to trust is difficult.
• Medical professionals, including doctors, nurses, and others genuinely seem to want to help, but no one has taken a true leadership position to guide diagnosis, research, treatment, follow-up, etc.
• The medical industry, including companies that provide drugs, equipment, and other items for diagnosis and treatment, by nature, have to look at the commercial aspect of their products and services.
• Diagnosis of Diffuse Intrinsic Pontine Glioma is usually considered terminal by the medical community.

By the Numbers

• Google finds almost 300 Million sites when searching for "cancer." "Brain tumor" turns-up almost 2.5 Million sites.
• Yahoo! finds almost 200 Million sites when serching for "cancer." "Brain tumor" turns-up over 2.5 Million sites.
• There are almost 5,000 treatment trials, as reported by the National Cancer Institute.

Even all the money in the world can't buy a cure for Diffuse Intrinsic Pontine Glioma (DIPG)...

• Communication and coordination are issues:
• There is too much out there (see By the Numbers).
• Parents don't know whom to trust. They trust their local oncologist and are afraid and/or fear quacks and "miracles" out there taking advantage.
• Information is frequently out-of-date.
• Trials always take a very long time, but usually do not (?can not?) post intermediate results (i.e. prior to the completion of the study).
• Other treatments that shouldn't hurt or interfere with primary treatments -- as shown by published, peer reviewed documentation.
• All of the above combined with other factors, such as parents wanting to memorialize their child, make the DIPG "community" completely uncoordinated. This leads to a fragmented bunch of tiny, local foundations that can't really raise too much money and eventually wither away after a few years.
• Giving families with children fighting this battle a few hundred, or even thousand, dollars may very briefly alleviate only some of the stress associated with the diagnosis, prognosis, and treatment. This will not help much in the way of preventing or treating children diagnosed in the future.
• Giving money to medical/clinical research is partly a matter of focus. Spreading the funds too thin would probably not motivate researchers enough to work faster to find a cure. Besides, wading through the FDA morass takes a lot of time. Does this mean to fund research outside the US? Does it mean to (help) lobby the FDA to fast-track all cancer treatments and trials? Further, funding research that's headed in the wrong direction is a waste, but there's no way to know a priori who's going down the right path.
• Giving money to epidemiological research? Two things should be noted. First, there is no long-term treatment and, arguably, nothing is even on the horizon. Even the short-term treatments only prolong life -- but not for long and frequently with minimal "quality of life." Of course there are varying degrees and definitions of "success." Second, because of the lack of treatment, maybe focus should shift to prevention. There has been some research around causes of brain tumors. High correlations have been shown between N-nitroso compounds ingested by pregnant or nursing women and pediatric brain tumors, but of course not causality. Maybe this is a place to fund more research?
• What about a Brain Tumors for Dummies-type book, which oncologists ought to give out when they make a (new) diagnosis. Fund the writing, reviewing, publishing, and distribution of the book and, of course, a web site for updates. There is such a book called, "Childhood Brain & Spinal Cord Tumors : A Guide for Families , Friends & Caregivers." Also, Paul Zeltzer has written several books on this topic.
• What about sponsoring a contest? Maybe an annual contest, like a Nobel Prize for Brain Tumors (or Cancer in general), which gives money to the most promising research? Or an "ultimate" contest, like giving a gigantic amount of money to someone that can reliably, statistically, show that they've cured even one type of brain or central nervous system tumor, regardless which one? Again, this would take a very long time and we'd need to define what "cured" means. Today the usual definition is 5 years without recurrence -- what if it recurs in year 6, or at 5 years and 3 months? Would 10 years be better? 20? Unless this was at least hundreds of millions of dollars, big pharma would probably be uninterested, so the focus would be on start-ups, universities, etc.
• What about funding educational and awareness programs about non-traditional treatments and prevention eventually? In small part, this would be to make the general public aware of the prognosis of this horror, although most people understand that "brain tumor" = "death sentence" (in most cases). The larger part would be to campaign for medical schools to offer courses in complementary treatments, although some have already started. Also, would students really care that much? They just need to pass the classes to graduate. They do their learning on-the-job as interns, residents, and fellows. It would also be reinforcement in non-traditional medical schools, including osteopathic, naturopathic, homeopathic, chiropractic, etc., which may already offer complementary treatments.
• Some portion of the funds will go to families that have decided on Dr. Burzynski's antineoplastons treatment. We know it works. For Leo, after only about 40-something days on the treatment, the first MRI showed approximatey 6% reduction without traditional treatment! In fact, as a result of just 2 radiation treatments, the first MRI showed tumor enhancement, while the following MRI showed reduced enhancement. Enhancement is usually not a good thing and had Leo not gotten those 2 doses, it would have meant a lot less worrying and wondering.
• Further, some portion of the funds should go to starting another trial of antineoplastons outside of the Burzynski Clinic in Houston. Although this has been tried before, funds will need to be made available to validate and audit that anyone working outside of the Burzynski Clinic follows the protocol to the letter.
• In addition, although this wouldn't directly benefit children, maybe someone should do research on the theory that antineoplastons are species-specific. Since so many in vivo experiments are done using rats and mice, maybe someone should try to isolate their antineoplastons, just like Burzynski isolated human ones.
• What else?
  

Fall Season...

For most people, it's the fall or autumn season. Unfortunately for us and so many others, it's death season. Leo passed away 16 days ago, on Monday October 23, 2006. He always was the leader of the pack, we just wish he wasn't in this one:

• David Tice, 26 years old: Tuesday October 24, 2006, died (DIPG).
• Paul Leverett, 47 years old: Saturday, October 28, 2006, died (necrosis from radiation for GBM).
• Hannah Hatlen, 5 years old: Tuesday October 31, 2006, died (brain stem glioma).
• Katya Polishchuk, 5 years old: Wednesday, November 1, 2006, died (DIPG).

I'm sure I missed others and I'm not purposely omitting anyone, but this isn't exactly the type of list where someone would actually want to be included.

Reading about each of these deaths, particularly the young ones', was like reliving Leo's passing. Leo, Hannah, and Katya seemed to have similar endings to similarly short, sweet, innocent lives. Leo's passing was our own personal holocaust.

Dear Leo

It's been 10 days since you were taken from us and things have not gotten much easier. If I were to describe how much we miss you, I would certainly be understating it. Anna and Nina are helping us a lot with trying to go on. They know you aren't here with us anymore, but keep us going. Maybe they know much more than anyone even imagines, meaning they know you're alright, so they aren't sad. In fact, when they see either of us sad they tell us to cheer up. In the evening of the day you took your last breath here, I told the girls that you no longer had any "owies." Since then, they don't ask where you are, which they always did when you in the hospital, and they don't say you have any owies. They must know more than we; they know you are in a better place now.

So many people came to say goodbye at your funeral last Wednesday. It was standing room only! Cantor Rob led a beautiul service and when he chanted the Psalms, it was as if King David, himself, was there to guide you through the valley of the shadow of death. At home, lots of people came from all over, brought food, and helped us mourn as well as celebrate your short life. After seven days, your shiva candle burnt-out today, so shiva is over. We went to the cemetery today with your Grandparents, my Aunt and Uncle, and Cousin Irina. We all miss you so very much...

Leo, you probably already know, but our on-line friends from Vancouver lost their precious daughter, Hannah, yesterday to the same monster as you. Show her the ropes; she seems like a really sweet girl. Yesterday was also Halloween. It was very sad without you. Remember last year? You were Batman, Anna was a spider, and Nina was a pumpkin. This year, Anna and Nina were Care Bears. Regardless, everyone feels your absence, even every room in our house seems to miss you.

We love you, Leo. Always have and always will.