Tristin went to New York a week ago for scans with his Aunt Angel and grandmother. We had high hopes that everything was ok and we could continue with our Irreno/Temodar treatments at home that have kept him stable so many times before. Friday afternoon before they left the hospital, the MIBG report came in and eveything was stable. Monday morning I got an email from Dr. Basu and she said there were some new spots on his neck that didn't show up on the MIBG scan because they were so small but did show up on the MRI of the spine. So freaking....... frustrating!!!!! The bottom of his spine looked improved from the radiation. I'm very thankful for that but now we have to change up our treatments. The chemos that have kept him stable in the past are just barely not keeping him stable anymore. He's had small amounts of progression the past 5 months now. The crappy part is that it's just enough progression that they don't want to continue with those types of chemos.
I thought we were going to start this Monday on a new combination of drugs involving Irreno/Temo and a new drug called Velcade, but I found out yesterday that our insurance hasn't approved it yet and might not at all!! It could take several weeks to get approved and we really need to be doing something now. If we don't hear anything by Wednesday, we might have to go to Cincinnati and try to get on a trial there. Birmingham might have a Senaca Valley trial slot open but as of yesterday, it was taken.
I've also been in contact the past month with Dr Sholler's office in Michigan and have send copies of all our paperwork and records up there. I just found out last week that our insurance did approve for us to go up there thank goodness. I just pray that she will have some trials that we can go on and get Tristin at least back to stable. Once he remains stable for a few months, then we can start back on the humanized 3F8 that he did so well on. But they won't put him back on that trial until the progression is in check. As of right now, Sloan only has the MIBG therapy left for us and we were holding off on that one.
We've never been in this position before. There's always been a plan in place but we just seem to be blowing in the wind right now. I feel like were stuck in a small boat out in the middle of the ocean and have been caught in a huge storm and don't know where we'll end up. I have absolutely no idea what, where, or when we will be doing treatments that he needs soon. I honestly have no idea if we'll be in Grand Rapids, Cincinnati, Birmingham, Atlanta, New York, or at home next week. Absolutely no clue right now......We can postpone chemo a week but it doesn't need to be much more than that. I don't like this feeling at all. Not at all. Needless to say, I'm a little stressed. Actually, I'm pretty pissed about the whole situation.
One thing I do know is that we will do whatever it takes or go wherever we need to go to get Tristin healthy. I'm so thankful that we are blessed with a great supportive and loving family and so many wonderful and amazing friends that are thinking and praying for us. We wouldn't have made it this far without you. God bless you all.
When I find out what's going on, I'll let everyone know.
With Love, Hope, and Faith,