Friday, February 26, 2016

The Chad Tough Foundation is a group that is supporting research for treatment for DIPG, a type of brainstem brain cancer in kids. Right out of the gate, there is no treatment. So, as a new parent, not a seasoned cancer parent, with the newly fallen sky on top of you, the doctors can only say there is 0% survival rate beyond about a year. Most general pediatric brain cancer experimental trials exclude DIPG because it is such a lost cause (notice experimental trials, so not even the most riskiest, least desirable trials). The FDA would pull the trial if the first several patients died up front, so researchers want to give the trial a chance of working for the other kids' sakes for whom it might work. Even the one that Eli is about to begin in Georgia excludes DIPG because the purpose of this trial is to initiate inflammation, and any inflammation in the brain stem - a very tight space that controls breathing, heart rate, eating, walking, hearing, seeing, talking, nerves and muscles - would be a quick death, quicker than the median of one year without treatment. Some trials are stopped because they did include DIPG, but so many died from it initially, they stop the trial in order to rewrite it and exclude the diagnosis in order to continue the trial on other brain cancers. The Mayo clinic trial with the virus is an example, and it was because of inflammation in the brain stem. They are just now getting ready to reopen, and it has been closed for many months for that re-do. DIPG treatment trials are usually just for DIPG - usually. DIPG is the rarest of the pediatric brain tumors, affecting 200-400 kids each year. So, it is hard to get the attention from researchers, and pharm companies to try new things when such a small percentage of the childhood cancer population is affected, except under the theory that if they can find something that works for DIPG, then it will likely work for so many other less aggressive and less resistant cancers. So, a treatment or cure for DIPG would certainly have a ripple affect to the future for so many others, and the net would catch the rare cases that are not rare from where their parents sit. As a side note, Eli is doing well as far as we can tell. We signed up for the trial, and will leave Sunday for some preliminary screenings, new MR images, irradiation practice, EKG, some things like that. Then he will start the drug on Friday, and radiation on Monday. I will write more another time. We are preparing for our fundraiser tonight, so it's a busy day. The Mustang room is almost done. We had some big pieces that hadn't come in when the group was here finishing it up, but they are in now, and we are putting them up today. I'll take pics when we are done.

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