Tuesday, July 17, 2012

Do you want the good news or the great news first? Ok, the great news is that Eli’s scans and lumbar puncture from Friday show no sign of disease in his spine or in the original tumor area or in the spinal fluid. The good news is that the second largest tumor at his pituitary gland has responded to the treatment but it is still there. It is smaller, which means that the treatments did/are doing something, so after the last two treatments when they scan him again if it doesn’t change that may be an indication that it is dormant (which is the worst case of good news) or that it is dead and has left scar tissue. There is no way to know which one except that if it grows after treatment is completed, it was obviously not dead. So, for our immediate goals of this current effort, he is doing “brilliantly.” We can’t know what is coming post-treatment, and there are a lot of what-ifs, and we want to be aware of those and have a plan for those, but for our goals from this treatment which began seven months ago, we are right on track. Surgery at the pituitary is risky business because of where it is and what it is, so if it is even an option it would be a Hail Mary. And, there are some possibilities of secondary cancers because of the high dose of radiation, and just the mere fact that medulloblastoma is an aggressive cancer, so the woods are thick no doubt, but we are at a clearing for now. Eli has had school today and other routine appointments. We went to another movie tonight that he had wanted to see and they all played in the cabin and on the playground some. He has been the most normal at this break with the others, playing pretend with Abbey that she loves so much, and chattering in the way-back seat with her. When he was at home between radiation and treatment he was very distant from them, like he couldn’t figure out how to fit back in, but he has seemed to feel good this go around. It makes it so hard to make him leave them in order to get back at the apartment in time to get medicine or his TPN started on time. It also makes it so hard to prepare for “in-patient” duties, which he and I will be going in for Wednesday night to begin fluids for chemo starting Thursday morning. But, fervent prayers that this round will go smoothly this time and bring no more than expected affects. He will have three days of chemo, a fourth day is for rest, the fifth day is for stem cell transplant – and we want it to work just like that! If I haven’t already said it, I will say it again, and I’m sure say it many more times, but you all know that the third day of chemo that we missed during the second session is upsetting my OCD. I will have a twitch on my eyelid until the undertaker closes them for that one. Prayers for Lucy as she recovers from her open biopsy, and for the children I see every day that are fighting a fight that is not theirs. The picture tonight is of Eli and Abbey in the loft preparing some kind of prank on their daddy.

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