Friday, March 26, 2004
Day + 171 As I promised here is a report of John's doctor appointment today. His platelets continue to drop, they are at 31 and by next week he may have to begin platelet transfusions. His hemoglobin dropped only a little to 11.9, but considering it was just 12.2 last Monday this is not a significant drop. I continue to give him once a week Epogen shots and every other day Neupogen shots which are helping keep some of the healthy white cells. Both of his big toes continue to be infected, but not really that bad, just sore enough to be bothersome. It is very weird since I understand how the side with the ingrown toe nail became infected, but his other big toe has similar swelling without an ingrown toe. All of John's other labs looked remarkably good. All his liver enzymes are great which is unusual when John has active leukemia.
On the City of Hope front they are trying to see if they can arrange donor lymphocytes to be collected. Dr. Wolf says John will need some chemo first to get rid of the leukemia cells. This can be done up here, but we may have to go to City of Hope for the actual infusion of the cells which is a bummer since at this point I know how to infuse cells so I know Dr. Wolf is capable of doing it too. The problem arises in that first I am sure insurance won't pay for it if Alta Bates does it, and Dr. Wolf said the NMDP may not allow the donor cells to go any place else but where they did the MUD transplant. He is going to check to see if there is some exception for us...traveling to Southern California again for even a week is asking so much. And I know if they say a week it will be two. John knows it too and he would rather have the people who know him best go through this with him.
Next week Dr. Wolf is on vacation so John is entrusted to Dr. Cassidy who is a very good doctor that both John and I like. John will see him briefly on Monday to see if he will need to have platelets given, otherwise the rest of the decisions (when and where they will do the infusion or if at all since we are still hopeful the Graft vs. Leukemia will kick in by then) will be made a week from Monday when Dr. Wolf returns. In the mean time all the prayers are appreciated since they seem to be keeping John well enough to go to school.
On the City of Hope front they are trying to see if they can arrange donor lymphocytes to be collected. Dr. Wolf says John will need some chemo first to get rid of the leukemia cells. This can be done up here, but we may have to go to City of Hope for the actual infusion of the cells which is a bummer since at this point I know how to infuse cells so I know Dr. Wolf is capable of doing it too. The problem arises in that first I am sure insurance won't pay for it if Alta Bates does it, and Dr. Wolf said the NMDP may not allow the donor cells to go any place else but where they did the MUD transplant. He is going to check to see if there is some exception for us...traveling to Southern California again for even a week is asking so much. And I know if they say a week it will be two. John knows it too and he would rather have the people who know him best go through this with him.
Next week Dr. Wolf is on vacation so John is entrusted to Dr. Cassidy who is a very good doctor that both John and I like. John will see him briefly on Monday to see if he will need to have platelets given, otherwise the rest of the decisions (when and where they will do the infusion or if at all since we are still hopeful the Graft vs. Leukemia will kick in by then) will be made a week from Monday when Dr. Wolf returns. In the mean time all the prayers are appreciated since they seem to be keeping John well enough to go to school.
Monday, March 22, 2004
Day + 167 First let me apologize for not posting a blog last week. We were waiting for test results and anything I would of posted last week would of made each of you more concerned than necessary, and would have led to questions I cannot answer, even now I feel I don't have enough information to answer properly.
Last week after John and James had a successful and great trip to Las Vegas (both came home with as much money as they went with) John and I went to his regular weekly blood test and check in with Dr. Wolf. The CBC came back with a very low white count (.8; normal is 4.8-10.0) and a 30 point drop in platelets (134; normal is 150-400). John's absolute neutrophil count was also almost non-existent at 404 (normal is 1400-6500). Dr. Wolf immediately decided to do a bone marrow biopsy hoping that it was the extra anti-viral John has been taking for the CMV, but suspecting the worse: relapse.
Dr. Wolf called to say there is leukemia in John's marrow. Now please first of all don't get upset; I can do that enough for all of us. There is a plan and there are extra tests that were run to help us understand what will be best for John. First they took John off all the immune suppressant (he was only on Cyclosporne) in hopes of letting the donor cells go wild and attack the leukemia. Dr. Wolf also sent John's marrow down to City of Hope to get the percentage of John's marrow to the donor. In the meantime we began every other day neupogen shots to make a few good white cells (donor included since they are the ones that must attack the leukemia cells), and of course run the risk of increasing the leukemia cells too. John also went to have his blood drawn two more times last week, thankfully with an improvement of white cells (2.6) with an ANC (1323). However John's platelets continue to fall and as of today they were 41. A low platelet count which John has had several times means he will bruise easier.
This morning at the appointment we were told that John's marrow is 30% leukemia cells and 70% donor. Dr. Wolf is consulting with City of Hope about the possibility of infusing donor lymphocytes which are more aggressive and will attack the bad cells sooner, but this can also cause severe graft vs. host. I haven't had the energy to look up or research this possibility yet, but we are told the donor most likely would be willing to help again. What mostly we are hoping for is that John will "dodge the bullet" as Dr. Wolf said today and the donor cells will go to work since there is no immune suppression to stop them.
I hope I haven't confused anyone. I hope I haven't made this sound dire, since we are assured that this isn't the biggest deal in the world (not the smallest either since we would like NO LEUKEMIA cells), but John will be watched more closely again. We will go to the doctor on Friday morning. John continues to go to school, and he continues to be healthy, just a bit more tired than usual. John really doesn't want to discuss this, he would like to ignore it so please no pity for him. In fact John and James are still moving out this month and he has been busy packing boxes and settling into the new place.
What else does this mean? We don't really know. That is one of the mysteries of dealing with cancer, and one of the life lessons it teaches. As Dr. Wolf once told me when John was so sick with the Mylotarg treatment, he said, "try not to speculate" since all it did was cause more stressful energy than helpful energy. Dr. Wolf figured it out and pulled John through that time, so I sit here tonight telling everyone to continue to pray for Dr. Wolf to be able to figure it out again and that John will dodge the bullet.
Last week after John and James had a successful and great trip to Las Vegas (both came home with as much money as they went with) John and I went to his regular weekly blood test and check in with Dr. Wolf. The CBC came back with a very low white count (.8; normal is 4.8-10.0) and a 30 point drop in platelets (134; normal is 150-400). John's absolute neutrophil count was also almost non-existent at 404 (normal is 1400-6500). Dr. Wolf immediately decided to do a bone marrow biopsy hoping that it was the extra anti-viral John has been taking for the CMV, but suspecting the worse: relapse.
Dr. Wolf called to say there is leukemia in John's marrow. Now please first of all don't get upset; I can do that enough for all of us. There is a plan and there are extra tests that were run to help us understand what will be best for John. First they took John off all the immune suppressant (he was only on Cyclosporne) in hopes of letting the donor cells go wild and attack the leukemia. Dr. Wolf also sent John's marrow down to City of Hope to get the percentage of John's marrow to the donor. In the meantime we began every other day neupogen shots to make a few good white cells (donor included since they are the ones that must attack the leukemia cells), and of course run the risk of increasing the leukemia cells too. John also went to have his blood drawn two more times last week, thankfully with an improvement of white cells (2.6) with an ANC (1323). However John's platelets continue to fall and as of today they were 41. A low platelet count which John has had several times means he will bruise easier.
This morning at the appointment we were told that John's marrow is 30% leukemia cells and 70% donor. Dr. Wolf is consulting with City of Hope about the possibility of infusing donor lymphocytes which are more aggressive and will attack the bad cells sooner, but this can also cause severe graft vs. host. I haven't had the energy to look up or research this possibility yet, but we are told the donor most likely would be willing to help again. What mostly we are hoping for is that John will "dodge the bullet" as Dr. Wolf said today and the donor cells will go to work since there is no immune suppression to stop them.
I hope I haven't confused anyone. I hope I haven't made this sound dire, since we are assured that this isn't the biggest deal in the world (not the smallest either since we would like NO LEUKEMIA cells), but John will be watched more closely again. We will go to the doctor on Friday morning. John continues to go to school, and he continues to be healthy, just a bit more tired than usual. John really doesn't want to discuss this, he would like to ignore it so please no pity for him. In fact John and James are still moving out this month and he has been busy packing boxes and settling into the new place.
What else does this mean? We don't really know. That is one of the mysteries of dealing with cancer, and one of the life lessons it teaches. As Dr. Wolf once told me when John was so sick with the Mylotarg treatment, he said, "try not to speculate" since all it did was cause more stressful energy than helpful energy. Dr. Wolf figured it out and pulled John through that time, so I sit here tonight telling everyone to continue to pray for Dr. Wolf to be able to figure it out again and that John will dodge the bullet.
