Ethan and I had the privilege of going to Duke last week to take part in the announcement of the Pediatric Brain Tumor Foundation Research Institute. This is really huge news! The Pediatric Brain Tumor Foundation of the United States (PBTFUS) has awarded Duke’s Comprehensive Cancer Center $6 Million to be devoted exclusively to pediatric brain tumor research. The intent is to develop innovative and less invasive clinical treatments for childhood brain tumors. As with all of the research funded by the PBTFUS, a Scientific Advisory Board of leading neuro-oncology clinicians and researchers will oversee the research at the Institute, but many of the traditional hurdles inherent to government funded research will be eliminated.
When Mike, Diane and Pete (from PBTFUS) first told me about the initiative back in January, it just floored me. This will do for pediatric brain tumor research what the Integrated Product Teams did for the automotive industry. It really moves it to a whole different level of collaboration and effectiveness.
This is huge news for me and I hope it is for all of you reading this as well. When I went to my first Ride for Kids event, I saw people registering who just dumped out envelopes of money on the table, in $20s, $10s, $5s and even $1s. This is as grass roots as it gets and I will challenge anybody who believes that their contribution doesn’t make a difference. I’m so grateful to the folks at the PBTFUS and also for each of you who has made contributions in Ethan’s honor. Thank you. I really think that things are going to get better for these kids – and because of the Institute – it will be sooner rather then later.
Ethan enjoyed the trip a lot, but I’m thinking of making the next one a surprise. He was so excited to see Mike Traynor that he stayed up late the night before we left and couldn’t sleep that afternoon. It made for a very fragile boy, but he held up pretty well given the circumstances. He quietly (errrr, sort of quietly) played with his fire truck matchboxes while we talked to reporters. Later during lunch, he boldly snuck up to the President of Duke University and crowned her with a plastic fireman’s helmet. By the end of the day, he had toured a fire station, an ambulance and a helicopter. Somehow, he got it ALL in. The folks down at Duke were also extremely hospitable to us and treated him like royalty, despite the fact that he wasn’t a Duke patient (shhhh!).
We returned from Duke Friday afternoon and sadly brought home a souvenir. Both Ethan and I began with scratchy throats and a cough. Now my voice is completely gone. His Uncle Kracker concert at Celebrate Fairfax was also rained out and I felt too bad to take him anywhere else. What a sad way to end such a fantastic week.
Other then the unusually raspy voice, Ethan is doing fantastic and is eating more then I would have ever imagined. I’ve had to keep a steady stream of food flowing for about a week now and pay dearly when the supply chain breaks down. Both Bert and I feel like we can even see a difference in him. His counts returned to normal last week, which was a little weird. I was so used to seeing them either artificially high or non-existent that I forgot what normal blood counts look like. He’s even learned to read and interpret some of the numbers and was very proud of himself.
In terms of the surgery, Bert and I have wavered both ways. For a while, we thought we would have the 2nd surgery, although instead of a full craniotomy would opt for a stereotactic biopsy which can be done with considerably less risk. We’ve since gotten other opinions that caused us to question the effectiveness of a stereotactic biopsy in this situation. What we’re looking for would be so small that using stereotactic equipment would not be much different then playing pin the tail on the donkey. Maybe we’d hit it but probably we wouldn’t. We’re going to sit on it for now and proceed with the other post-treatment procedures (MRI, spinal tap, PET scan) and then see what his first scan off-treatment shows (September-ish). If there’s anything suspicious, we’ll have to do the surgery. But none of the physicians that we spoke to felt like waiting 3 months would close off any options for Ethan, so that’s where we are. At this point we’re just waiting for his post-treatment procedures to be scheduled and wondering what post-treatment life is like...
Most of you have probably guessed, but I’m still wearing that waaaay ugly pair of sunglasses. How do things like this happen?!?
Kim.