It has been a busy month. On the medical front we consulted with several of the country's top neurosurgeons regarding Clay's syrinx problem. None of them feel that surgery will be a definite cure to his symptoms -- they call his an "open up and see" case. The chiari decompression is typically done to open up space in the brain stem, by removing the blockage and putting in a patch to provide more space. In Clay's case, they feel tumor is all tangled up in what they would normally remove, making the surgery more risky and a positive outcome less certain.
In the meantime, we just yesterday were confirmed and started the Phase 1 clinical trial in Pittsburgh that I mentioned we were hoping for in my last post. All the doctors agree that if this approach works, it could alleviate the syrinx issues and hopefully reduce the symptoms being caused by the syrinx (by shrinking the tumors causing the blockage). It was a very long, tense day, because Clay was sitting exactly on top of the fence of being accepted or rejected due to the complicated nature of his case. The day started at 5 a.m., with JD and Clay walking over from the Ronald McDonald house (where the 4 of us had slept the night before) for an MRI. Grace and I joined them just as Clay was waking up from the anesthesia. Then, from 11 to 4 p.m. we met with the lead doctor and the medical team who will be our new doctors as we transfer Clay's care to Pittsburgh. Clay received his first shot of the vaccine, along with another shot of ICLC, the immune-system booster that attracts the T cells to which the proteins hopefully bind. As always our boy was a champion. Dr. J told him "Wow, you are the best patient I have ever had!" and he replied, "I know! That is what all my doctors tell me." We will go to Pittsburgh every 3 weeks for the shots, with MRI's generally done every other visit. The biggest danger is that swelling will worsen Clay's already poor vision, so he will be watched very closely. He is not allowed to have any chemo while on this trial, but they can use steriods if necessary. Two children with similarly aggressive low-grade gliomas have had excellent
responses on this trial, but the numbers of children in the trial are
very small. At the end of the day we had a difficult drive home dodging thunderstorms almost the entire way.
Today Clay is feeling ok, with an achy leg as predicted (from the shots). He is more upset, however, because Mousy (his much-loved stuffy, featured in several blog photos), seems to have jumped out of the car while we were in Pittsburgh, perhaps when we stopped at the Zoo. Of course this mouse can not be replaced and Clay cried himself to sleep last night saying "I told him I would never leave him." I started to cry as well. Of course I recognize my reaction to this loss is silly, but I can not forget what comfort this mouse has given Clay during his surgeries, hospital stays, chemo sessions and difficult moments. I am keeping my fingers crossed he will find his way back to us somehow.