It hit me today that the next few weeks of recovery for Johnny may well be the most difficult for Julie and me. Until he is ready to go to transplant Johnny will not be getting any additional chemotherapy other than the spinal taps scheduled for the next two Mondays. This will allow him to regain some strength, and hopefully start feeling a little better. For Julie and me though, it will be weeks of waiting for twice daily lab results to see if his WBC stays down, and worrying that every fever spike is the start of another infection. Johnny has crossed so many obstacles to get to this point, and its hard to finally see the goal and not quite be able to reach it.
I confirmed today that Johnny does have a donor ready for transplant, and that the only real holdup at this point is Johnny. He is currently too weak to go to transplant. Preparation for transplant involves more very intense chemotherapy with drugs that Johnny has not yet had exposure to. He will also go through extensive radiation therapy to make sure to the greatest extent possible that none of the cancer has survived. Both Dr Shaw and the doctors on the transplant floor are worried that in his current condition Johnny would not survive the procedure. The normal recupreation time before begining transplant preparation is eight weeks. Johnny will not have the luxury of that much time to regain his strength. All of Johnny’s doctors feel that it is important to get Johnny to transplant as soon as possible to avoid the possibility of another relapse. None of them want to put Johnny through another round of Clofarabine, and doing so may be pointless if he can’t get enough recovery time to get to transplant. At this time everyone has agreed that Johnny will move to the 8th floor (transplant) on October 1st, but with the understanding that the date could be moved up or back depending on his condition. I’m sure Johnny would probably like to put off the chemo and radiation as long as possible, but for Julie and me it can’t come soon enough.
Onward,
MR