Saturday, April 10, 2004
Day + 186 Today John will have his first platelet infusion since being at City of Hope. His platelets were at 15 yesterday. This will mean that John will have at least a 5 hour stay at the cancer center most of it waiting for the platelets to arrive. Once they arrive it only takes about 20 minutes to infuse them. John's WBC's continue to fall (1.5) even with daily neupogen, and his hemoglobin was 10.5 yesterday. All the counts could be down because of the Hydroxyurea since it's major side effect is bone marrow suppression (therefore leukemia cell suppression).
Dr. Wolf talked to John yesterday about the probability of having to hospitalize him on Tuesday morning and begin IV chemotherapy. They will use either Mylotarg (which last time nearly killed John, but now they know why and can prevent it) or a light dose of Ara-C. The plan is to get the leukemia count down and then infuse donor cells.
John and I went to Alta Bates 20 year bone marrow transplant reunion Thursday evening and ran into Dr. Forman the head of COH bone marrow transplant unit. I really hope if we go back to COH he will be willing to be in charge of John. He is funny and John immediately liked him. Dr. Forman let me know that he a Dr. Wolf have been "putting their heads together" and are "devising a plan" for John's care and cure.
Each day that goes by I deny it less to myself that John has luekemia again, have even said the words to a few, but I still have confidence that John will some how manage to get through this again and get better.
Dr. Wolf talked to John yesterday about the probability of having to hospitalize him on Tuesday morning and begin IV chemotherapy. They will use either Mylotarg (which last time nearly killed John, but now they know why and can prevent it) or a light dose of Ara-C. The plan is to get the leukemia count down and then infuse donor cells.
John and I went to Alta Bates 20 year bone marrow transplant reunion Thursday evening and ran into Dr. Forman the head of COH bone marrow transplant unit. I really hope if we go back to COH he will be willing to be in charge of John. He is funny and John immediately liked him. Dr. Forman let me know that he a Dr. Wolf have been "putting their heads together" and are "devising a plan" for John's care and cure.
Each day that goes by I deny it less to myself that John has luekemia again, have even said the words to a few, but I still have confidence that John will some how manage to get through this again and get better.
Wednesday, April 07, 2004
Day + 183 Another reprieve...John can spend the weekend out of the hospital as long as there is no fever or severe stomach distress. So far the hydroxyurea is causing a bit of a sour stomach, but John says once it cycles through he feels better. Dr. Wolf will give this drug until Monday to show a significant reduction on leukemia cells (higher platelets and a better white count). Dr. Wolf told us today that he is finding leukemia cells on the slides which means there are so many of them there is enough to begin escaping the bone into the peripheral blood. John will have to go to have another CBC on Friday to make sure he doesn't need to be hospitalized or give hope for vast improvement. This morning Dr. Wolf today was trying to prepare John for a couple week stay in the hospital having IV chemotherapy beginning next week since he does not hold out much hope that the hydroxyurea is strong enough to do the work that needs to be done.
Dr. Wolf talked to Dr. Stein at City of Hope and they are going about trying to arrange a donation of lymphocytes from John's donor Dr. Jim. I have it from a reliable source that Dr. Jim will stop everything and donate when necessary. I have requested that Dr. Wolf look at the possibility of allowing UCSF to do the infusion since they are NMDP approved. This way hypothetically John can get hit with chemo at Alta Bates under the care of Dr. Wolf (and the great staff) and be discharged from Alta Bates go to UCSF for the infusion, be discharged from there and come right back into the hands of the Alta Bates staff. Sounds easy enough to me...but you know protocol...we will probably have to head to COH and Dr. Stein will be happy to have John back.
John had a great dream last night. He was waiting for a plane when the flight got canceled. All the passengers got out their plastic tents in order to settle down and sleep. John said suddenly he became a commando telling all the passengers what to do and to fight the incoming rockets. I interpret this as John's life again feels like his flight has been delayed, and he has to return to the plastic bubble of leukemia treatment, however he knows he is in charge fighting the rockets and he will win. I have said this over and over, what an amazing guy he is.
Dr. Wolf talked to Dr. Stein at City of Hope and they are going about trying to arrange a donation of lymphocytes from John's donor Dr. Jim. I have it from a reliable source that Dr. Jim will stop everything and donate when necessary. I have requested that Dr. Wolf look at the possibility of allowing UCSF to do the infusion since they are NMDP approved. This way hypothetically John can get hit with chemo at Alta Bates under the care of Dr. Wolf (and the great staff) and be discharged from Alta Bates go to UCSF for the infusion, be discharged from there and come right back into the hands of the Alta Bates staff. Sounds easy enough to me...but you know protocol...we will probably have to head to COH and Dr. Stein will be happy to have John back.
John had a great dream last night. He was waiting for a plane when the flight got canceled. All the passengers got out their plastic tents in order to settle down and sleep. John said suddenly he became a commando telling all the passengers what to do and to fight the incoming rockets. I interpret this as John's life again feels like his flight has been delayed, and he has to return to the plastic bubble of leukemia treatment, however he knows he is in charge fighting the rockets and he will win. I have said this over and over, what an amazing guy he is.
Tuesday, April 06, 2004
Day + 182 Sorry I did not post last night, but John and I went to see a couple movies and by the time I got home I couldn't face the hours it takes me to wade through the junk e-mail before I can get to the bolg (those who know me well understand what I am talking about). Want to share a sweet story about my precious son John. John actually began sleeping at his new place a little over a week ago and took his cat too! The house has been quiet, but what made it feel like an empty nest was seeing my lone toothbrush in the holder. I sat and had my little boo-hoo about both Scott and John moving out and began of devising a way to remedy the lonely toothbrush, but on the other hand knowing I have to face it as all parents do when their kids leave. I shared this story with John telling him I was doing okay without him there except that darn lonely toothbrush. The other night after John stopped by I went in the bathroom and there was another toothbrush in the holder keeping mine company.
Okay enough and down to business. Yesterday at Dr. Wolf's John's blood test revealed that things still have not improved. John's platelets are now at 20 and his hemoglobin is at 10.4. His white cell count is still dangerously low 1.9, with the ANC at 338 (normal is 1400-6500). Usually when one it this low they are pretty sick with uncontrolled infections, but John is a different breed and for some reason continues to dodge germs. As a matter of fact Dr. Wolf said yesterday that because of John's "unique" status doctors are not really sure which way to go with his treatment. As of yesterday John began a cycle of an oral chemotherapy, Hydroxyurea. Thanks to my good friend Janet who researched the drug for me I now know that it is a drug often used for Chronic Leukemia, but in instances such as John's it has brought some into a remission and is less toxic than other chemotherapy's. This is an option that will hopefully kill the leukemia cells, but keep John out of the hospital for a while and buy some time for the doctors to figure out what to do.
Dr. Wolf says that City of Hope it trying to arrange a "total lymphocyte infusion" where by giving John the chemo and infusing donor cells it may help the give the donor cells a chance to do their job. I did ask the hard question about what was the point since 70% of John's marrow is donor and is currently not doing the Graft vs. Leukemia, but Dr. Wolf indicated it was all they had for now and since it has only been done a couple times results could bring remission. The hardest part to swallow is that the National Marrow program will not send cells to Dr. Wolf and if this infusion takes place John must go to COH. Dr. Wolf says for a week, but we all know about the medical delays so he really means a couple of weeks. I also shared with Dr. Wolf the fear of John being too sick to get down there or worse yet too sick to get back into his hands. I know this puts tremendous pressure on Dr. Wolf, while he wants to give information, he has no answers right now.
In the mean time Dr. Wolf told John he must suspend school for a bit. John is on spring break for a week and will postpone going to his next class which I think was advanced appetizer, but worded much fancier. For all who are dying to know, yes John was allowed to do his final in advanced baking and pastry arriving after a 5 and a half hour ordeal on the bridge. He baked a caramel apple tart with a rum caramel sauce on top. I didn't get any since his class and teacher ate it up, but from what John reports, "I wasn't happy with it, but everyone said it tasted good".
Okay enough and down to business. Yesterday at Dr. Wolf's John's blood test revealed that things still have not improved. John's platelets are now at 20 and his hemoglobin is at 10.4. His white cell count is still dangerously low 1.9, with the ANC at 338 (normal is 1400-6500). Usually when one it this low they are pretty sick with uncontrolled infections, but John is a different breed and for some reason continues to dodge germs. As a matter of fact Dr. Wolf said yesterday that because of John's "unique" status doctors are not really sure which way to go with his treatment. As of yesterday John began a cycle of an oral chemotherapy, Hydroxyurea. Thanks to my good friend Janet who researched the drug for me I now know that it is a drug often used for Chronic Leukemia, but in instances such as John's it has brought some into a remission and is less toxic than other chemotherapy's. This is an option that will hopefully kill the leukemia cells, but keep John out of the hospital for a while and buy some time for the doctors to figure out what to do.
Dr. Wolf says that City of Hope it trying to arrange a "total lymphocyte infusion" where by giving John the chemo and infusing donor cells it may help the give the donor cells a chance to do their job. I did ask the hard question about what was the point since 70% of John's marrow is donor and is currently not doing the Graft vs. Leukemia, but Dr. Wolf indicated it was all they had for now and since it has only been done a couple times results could bring remission. The hardest part to swallow is that the National Marrow program will not send cells to Dr. Wolf and if this infusion takes place John must go to COH. Dr. Wolf says for a week, but we all know about the medical delays so he really means a couple of weeks. I also shared with Dr. Wolf the fear of John being too sick to get down there or worse yet too sick to get back into his hands. I know this puts tremendous pressure on Dr. Wolf, while he wants to give information, he has no answers right now.
In the mean time Dr. Wolf told John he must suspend school for a bit. John is on spring break for a week and will postpone going to his next class which I think was advanced appetizer, but worded much fancier. For all who are dying to know, yes John was allowed to do his final in advanced baking and pastry arriving after a 5 and a half hour ordeal on the bridge. He baked a caramel apple tart with a rum caramel sauce on top. I didn't get any since his class and teacher ate it up, but from what John reports, "I wasn't happy with it, but everyone said it tasted good".
