Thursday, February 17, 2005
5/2/04
We finally saw the oncologist Wednesday, and he was terrific. We'd already heard that he was tops in the field, both as a neurologist and as an oncologist, and it turned out he's one of the authors of the study Jacob will be on, and knows it inside and out - including knowing which aspects are set in stone, and where there might be wiggle room. I felt really confident he would never steer Jacob into anything just for the sake of a protocol.
Best, the guy was great with Jacob, starting with really listening to him to understand how much he knew already, and then telling him everything else. Even the hard stuff, like the fact that Jacob will probably be sterile, the memory impairment, the word "malignant", he told in a way that made it real, but not overwhelming for us or for Jacob.
At the end I took Jacob out for a walk while Young and our friend Luika Timmerman stayed to ask questions. The doctor told them Jacob has a good chance of a cure and Luika, who is a breast cancer researcher, said oncologists never use the word "cure". So that was positive.
Now we know where we stand: Jacob goes in to Packard Children's hospital at Stanford tomorrow to start chemo. He'll be in for three days, probably, and back to school the following week if all goes as planned. Alternate cycles will be five-day stays. They are going to do six cycles at three week intervals, then evaluate. After that there is a very high dose option with stem cell rescue, but he might not need it. Radiation is certain either way.
I conked out for 2 hours as soon as I got home from the doctor, but I'm really okay. I'm still so feeling so lucky he made it through the crisis with the hydrocephaly, that I feel more grateful than put upon. Right now there is a lot for me to do to take care of Jacob, which keeps me occupied. He's got a lot of fluid under the incision from the shunt, and he needs a lot of watching.
Young is doing research like mad. We have a number of friends who are researchers at Stanford and UCSF, so he's getting a lot of help, and it has given me confidence that this is really the best treatment. I'm kind of letting information seep in a little at a time and concentrating on what is needed at the moment.
Best, the guy was great with Jacob, starting with really listening to him to understand how much he knew already, and then telling him everything else. Even the hard stuff, like the fact that Jacob will probably be sterile, the memory impairment, the word "malignant", he told in a way that made it real, but not overwhelming for us or for Jacob.
At the end I took Jacob out for a walk while Young and our friend Luika Timmerman stayed to ask questions. The doctor told them Jacob has a good chance of a cure and Luika, who is a breast cancer researcher, said oncologists never use the word "cure". So that was positive.
Now we know where we stand: Jacob goes in to Packard Children's hospital at Stanford tomorrow to start chemo. He'll be in for three days, probably, and back to school the following week if all goes as planned. Alternate cycles will be five-day stays. They are going to do six cycles at three week intervals, then evaluate. After that there is a very high dose option with stem cell rescue, but he might not need it. Radiation is certain either way.
I conked out for 2 hours as soon as I got home from the doctor, but I'm really okay. I'm still so feeling so lucky he made it through the crisis with the hydrocephaly, that I feel more grateful than put upon. Right now there is a lot for me to do to take care of Jacob, which keeps me occupied. He's got a lot of fluid under the incision from the shunt, and he needs a lot of watching.
Young is doing research like mad. We have a number of friends who are researchers at Stanford and UCSF, so he's getting a lot of help, and it has given me confidence that this is really the best treatment. I'm kind of letting information seep in a little at a time and concentrating on what is needed at the moment.
# posted by Jacob's Dad @ 12:27 PM 
