Good days

Samson made a mini-comeback and had such a good day Sunday, followed by a not bad one today. After we got the IV nutrition (called TPN) going full speed, Samson responded by refusing even a drop of food by mouth, which gave his stomach a much-needed break. The fact that he felt so good on Sunday, once he had no food in his tummy, was a strong indicator that eating was causing a lot of his distress, presumably because of mucositis. He hardly required morphine on Sunday and we laughed and played a lot. Periodically he was still gagging and vomiting mucus, which is supposed to be lining his digestive tract but which he is shedding because of the chemo. Also, the nurses tell me, a lot of kids start to avoid swallowing even their own saliva, which Samson might be sort of collecting in his mouth, eventually causing him to gag.

Today, Monday, Samson woke up in decent spirits again, but way too early at about 4:30 a.m. Did I mention I am too old for this experience? He was alright this morning but not as happy as Sunday. He seemed hungry and drank a few ounces in the afternoon, but it didn't sit well and the day went downhill afterward, with more stomachaches and vomiting. We went back to some morphine and anti-nausea medication. Also, his platelets were too low again and he had to get a transfusion.

Tonight Samson had his third dose of methotrexate, a chemo drug he is getting in very small doses post-transplant. The drug is important to head off graft versus host disease (GVHD) by killing some of the donor cells that might want to wander around and cause trouble rather than heading to the bone marrow where they belong. The drug poses some lung risks, so a chest xray is required before every dose. Also, it has made him feel sort of rotten each night he has gotten it, and based on the squirming beside me, tonight will not be an exception.

Despite these bumps, I have been feeling like we are doing so well, so much better than my worst fears, that I asked Dr. Nemecek on Sunday whether she might want to revise our odds, now that it has become clear Samson is sort of kicking butt. She declined this opportunity. She said we have a hard week ahead and we should enjoy the good days but realize they may not continue. She did agree, though, that in many respects Samson is doing better than she had expected -- for example, she had thought he would be on TPN much earlier in the process, and she was pleased he had been able to keep eating this long.

I have also wondered whether, given that Samson has so far seemed to handle the chemo well, we should have considered something closer to a full regimen, rather than the reduced-intensity regimen we used. The idea behind this regimen was that Samson could not withstand a full regimen. The reduced-intensity is less toxic, and thus safer in the short term, but that may come with greater risk of graft failure and relapse. Now that he's not falling apart, I am naturally thinking, oh no, we underestimated him and did not fight the MDS as aggressively as we might have. As you probably guessed, Dr. Nemecek declined to go with me on this one either; she again said I should enjoy the good days and prepare for more problems. She also said I needed to trust her that Samson on a full chemo/radiation regimen would have been a disaster. I guess I'll have to trust her; I hope she is right.

I floated my medical analyses past the doctor on today, as well, and got pretty much the same response: Yes, he is doing great. Today. Enjoy it.

I will certainly take their advice to enjoy the good days. Aaron's mom went home on Friday, which leaves us a couple hands shorter at the house and missing Nana, but the up side is that every time Aaron comes to the hospital, he has to bring the kids with him, so I get more love. Last night and again tonight, he brought me dinner with three pajama-ed cuties in tow, all wild and funny. They also all came up for a couple hours on Sunday morning. The kids rode tricycles all over the oncology floor and, in my opinion, gave the place a needed dose of cheer. The kids aren't allowed in Samson's room, because of his super high-level quarantine, but we broke the rules and kept his door open for a few minutes so they could all see him and call to him across the room. He laughed and laughed to see their faces and hear them shout Sammy we love you!!