Tuesday, June 5, 2010

Collin had a very busy day today. He had speech therapy at 10 am, and then occupational therapy at 11 am. He worked very hard, and did really well in both sessions. After therapy, we had lunch in the cafeteria, and then we went to the clinic.

As of last Friday, the plan was to start five days of Temodar tonight, and then be admitted to the hospital Friday (June 8) through Sunday (June 10) for Cytoxan. However, plans have changed a bit. Since talking to me Friday afternoon, Dr. Comito spoke with the pharmacist, who recommended allowing more time between the two chemo drugs instead of having them overlap. So, Collin will start the Temodar this Friday evening, and then he'll be admitted to the hospital for the Cytoxan on Monday, June 18. He'd probably be discharged Wednesday, June 20. Then about a week later he'll likely be readmitted with a neutropenic fever.

Dr. Comito is still waiting to hear from MD Anderson as to whether they'll be willing to treat Collin. She said she doesn't think they'd turn him down unless they feel the radiation would be palliative instead of curative. I asked whether she still feels he's curable, and she said that as long as he gets the high dose of radiation, 36 Gy,* she still feels he has a chance at a complete cure. However, he will likely suffer throat pain and mucositis, as well as other GI issues, during the radiation. As close as he is to needing hearing aides now, she feels chances are good that he will need them after radiation. He will eventually need growth hormone as a result of the radiation. I don't know what the cognitive effects will be. She also said the odds of him being completely cured are not in his favor; they never have been. But certainly without radiation, he won't survive. Deep down I knew this, but it's hard, so damn hard, to hear it said. I'm terrified at the thought he won't survive this, but somehow I have to fight the fear and not let it win. I don't know how to do that. I don't know how to go on and live the rest of my life without my sweet son.

*[Up until recently, Dr. Comito had been talking about possibly doing a lower dose of radiation; however now that he has multiple new tumors, and we only have one chance to do radiation, it has become clear that a lower dose is out of the question. Also, she feels that the radiation may only take four weeks instead of six or seven. Usually the last two or three weeks of treatment are evidently just boosts (higher doses of radiation to the tumor bed), but since his tumors are in multiple places and none of them are in the original tumor bed, she doesn't know that they will be able to boost anything.]