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September 19, 2005

By Margot | September 19, 2005

Sam is upstairs with Julie, his favorite child life specialist playing video games. He had school today with his teacher and did very well. Radiation was a breeze. In and out. Neil and Andy are back home in San Diego and the nurses are unhooking Sammy during the day after he’s had his Vanco.

Dr. Bolotin wants to take his temporary line out on Thursday, discontinue his Vanco and let us go home next weekend for the weekend. Wahoo! Sammy won’t have a line at all until they start the antibody treatment (assuming we get randomized onto the trial). I’ll write more about the antibody treatment and its’ lovely side affects soon. We are registered for a trial in which 50% of the patients get the antibody treatment and 50% don’t so that the data will show whether or not patients respond better with the treatment or without. Our doctors here at City of Hope really think the antibodies are effective and that it’s a good idea to get them. I read on another parent’s website that they are really good in cleaning up disease in the bone marrow and preventing relapse there-a good thing because Sammy had so much bone marrow involvement. The antibody treatment, if we are randomized on, will add five more months of treatment, four days in the hospital every three weeks.

We have all of this week of radiation and then Monday, Tuesday and Wednesday of next week and then we’ll be done and will go home. We are practicing taking pills with M&Ms because the next step in the treatment is for Sammy to take a big horse pill of accutane twice a day. I think the only side effect there is that his skin will dry out quite a bit and possible mood swings but hey, we’ll cross that bridge when we come to it. For now we are looking at least one week with no central line in at all (first time since January) and going home. There is a faint glimmer at the end of the tunnel.

Topics: Progress Reports | Comments Off on September 19, 2005

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