Thursday, March 03, 2005
The plan
Jacob's sister, Ellie, and her boyfriend, Jacob Fenton, are coming in at midnight tonight from Philadelphia. I'm supposed to wake him to go to the airport. He's really excited.
He's been to school more than half of each of the last two days, including PE on Wednesday (I thought he was going to sit out...who was I kidding?) He gets tired, but he's so Jacob, he's very gratifying to hang out with.
He's handling the realities of the situation, like having a central line (catheter in his chest,) with patience and humor.
The two things that seem to bother him most about the upcoming stem cell transplant are 1) missing so much school and 2) not being able to go to restaurants, so he's decided he's going learn to cook.
We had a good meeting with the bone marrow transplant team. At my request Jacob video taped it for Young, who couldn't be there. Everything is subject to constant reevaluation and revision, but here is an outline of the plan as we know it:
o Five-day-long chemo session starting March 15
o Stem cell collection (aphaeresis) week of March 28 - This might take more than one day, depending on how many cells they get.
o Week long chemo session starting April 5
o MRI week of April 11
o If MRI is clear, bone marrow transplant to begin around April 18
o Else, two more chemo sessions and BMT to begin around June 30.
o If he has to have the extra two chemos, he may be able to go on the DC trip.
o Before the BMT when they actually give him back his stem cells, he will get a week of very high dose chemotherapy that will anilate any remaining tumor cells (and his entire immune system with it.)
o Either way, once the BMT starts, he's in the hospital for at least the first 30 or so days and then at Ronald MacDonald house for another 30 or more. Some of that time he will be heavily sedated, but only for a week or two.
o He CAN have visitors during isolation, as long as they are thoroughly healthy, wash their hands etc.
o After Jacob returns home, he will still be restricted from going to school or any other public place until his immune system is back in operation. This can be anywhere from a few weeks to many months, though Jacob has a good chance of being on the shorter span because he's getting his own cells, not a donor's.
Okay, time to go to the airport....
He's been to school more than half of each of the last two days, including PE on Wednesday (I thought he was going to sit out...who was I kidding?) He gets tired, but he's so Jacob, he's very gratifying to hang out with.
He's handling the realities of the situation, like having a central line (catheter in his chest,) with patience and humor.
The two things that seem to bother him most about the upcoming stem cell transplant are 1) missing so much school and 2) not being able to go to restaurants, so he's decided he's going learn to cook.
We had a good meeting with the bone marrow transplant team. At my request Jacob video taped it for Young, who couldn't be there. Everything is subject to constant reevaluation and revision, but here is an outline of the plan as we know it:
o Five-day-long chemo session starting March 15
o Stem cell collection (aphaeresis) week of March 28 - This might take more than one day, depending on how many cells they get.
o Week long chemo session starting April 5
o MRI week of April 11
o If MRI is clear, bone marrow transplant to begin around April 18
o Else, two more chemo sessions and BMT to begin around June 30.
o If he has to have the extra two chemos, he may be able to go on the DC trip.
o Before the BMT when they actually give him back his stem cells, he will get a week of very high dose chemotherapy that will anilate any remaining tumor cells (and his entire immune system with it.)
o Either way, once the BMT starts, he's in the hospital for at least the first 30 or so days and then at Ronald MacDonald house for another 30 or more. Some of that time he will be heavily sedated, but only for a week or two.
o He CAN have visitors during isolation, as long as they are thoroughly healthy, wash their hands etc.
o After Jacob returns home, he will still be restricted from going to school or any other public place until his immune system is back in operation. This can be anywhere from a few weeks to many months, though Jacob has a good chance of being on the shorter span because he's getting his own cells, not a donor's.
Okay, time to go to the airport....
# posted by Ann @ 9:49 PM 
