The first being when Con was diagnosed and sadly the third the traumatic day the twins were born much too soon. Connor will be having surgery Tuesday first thing in the morning, today I got the first honest assessment since the tumor was found. First, only 50 percent of the tumor was resected, not 75 percent like we thought (good survival rates are associated with 85 percent to complete resection). Second, because of it’s location it will likely never be totally removed by surgery so our best bet is to go all out with an aggressive surgery and shave near the brainstem and get to a point where there is “minimal disease” and hope consolidation chemo (high dose) with the stem cell transplants can zap the rest so that Con is stable until his his third birthday at which time we can do targeted proton beam radiation. The surgery has lots of risks, I am sure these risks are not very different than our last surgery, but we did not hear the risks last time because there was no point, the risk of not doing surgery was worse, death. There is a 3 percent chance he will be severely disabled, I.e. Paralyzed, not being able to breath without a trach, etc. there is a 10 percent chance of a facial palsy or that his eyes won’t track properly, both of these can be fixed with future surgeries if he beats the cancer. There is a 15-20 percent chance of transient cerebellar deficits which with therapy should correct themselves within 2 years, but it will make a rough time rougher. I focused on the 3 percent, told him that was a bit too much for me to stomach, he said most people focus on the 97 percent, those people have not had lightening strike them twice already I guess. Ultimately I spoke to our oncologist, cried a bit, and said I can’t lose his personality, or if we are talking about extending his life a year with deficits vs him being him for 3 months I would take the 3 months. Even with this she recommends surgery, she still thinks cure is possible but that there is a zero percent chance without surgery. So like that Connor will go into surgery with two very nervous and scared parents on Tuesday who will just pray he wakes up with that sweet smile of his.
In other bad news we harvested enough stem cells for a little over one transplant, we need enough for three but the line that was placed for the harvest stopped working during today’s attempt so we are on our way home with a kid who has a great white count and could have likely produced enough stem cells for his last two transplants disappointed because we will need to have a redo after his next chemo cycle, the inpatient days are just piling up, for anyone counting we are up to 49 nights I think.