Wednesday, January 21, 2004
Day +98 Two more days and John will be at the magic number of 100 days. What doctors look for in the first 100 days is donor engraftment (obviously since his platelets are 177 today), graft vs host disease that is severe because most likely that will turn into chronic GVH and over all good health of the patient. John's health is so good that he is returning to school (our fingers are crossed) February 23. The only snag will be if all the classes are full and then he will begin March 15th. I have to say that this is such good movement and news to be getting on with life as normal.
Yesterday John went and got an echocardiogram. The results are good, still some heart enlargement and a mitral valve regurgitation, but the medicine John is on is helping to give his heart a rest and it is much better than the last echo. Today John had his 100 day bone marrow biopsy, yeah I know its only day 98, but Wednesday was a better day to take him to the cancer center. Dr. Wolf, thanks directly to the fabulous Alicia (Dr. Wolf's practice nurse and our personal cancer center angel) arranged for Dr. Wolf to wait 3 minutes between giving the lidocaine and doing the biopsy. I know when they take the actual aspirate it still hurts. John says it is a tugging feeling all the way down to his bottom. He still felt that, but the process of the needle going into his back did seem less intense. The results should be back by late Friday, but possibly not until Monday when John has another appointment. I decided I was not going to call this time since I am really confident that John is still in remission. John's blood work looks great and he is gathering more energy each day. If I do get the results Friday I will post early so all who are reading this will not have to bite their nails until Monday. The other good news is Dr. Wolf lowered his prednisone to 5 mgs. twice a day. Soon John will be off of it all together and John will get his slim face back and lose some of the weight he has gained. John's rosy cheeks I mentioned last time are still rosy, not worse or better so no one is worried that it is GVH of the skin. And if it is, it is a very mild case. One last thing, Dr. Wolf heard about a doctor in the East Coast who gave his marrow up for a young man. Apparently very prominent in the doctor world even though Dr. Wolf does not know him personally or his name, but he thinks it may be our guy! Everything is looking up.
One sad note to the week is PJ lost her battle last week. I have to say I am pretty mad about her dying because she really wanted to live. I think her dying is in direct relationship with the terrible care she was receiving. PJ was in the military and had to put up with veteran's hospitals where she didn't even get the choice of doctor. Her doctor would have to try 3 or 4 times to get her bone marrow. And the ironic thing, the day PJ died was the day her blood began to show response to the drug they originally refused her. This means if they had given her the drug in the first place perhaps her body wouldn't of broken down to the point of no return. If we had Nationalized health care she could of gone somewhere else instead of where her insurance dictated her to go. I count my blessings every day we have such great medical care and Dr. Wolf as John's doctor.
Yesterday John went and got an echocardiogram. The results are good, still some heart enlargement and a mitral valve regurgitation, but the medicine John is on is helping to give his heart a rest and it is much better than the last echo. Today John had his 100 day bone marrow biopsy, yeah I know its only day 98, but Wednesday was a better day to take him to the cancer center. Dr. Wolf, thanks directly to the fabulous Alicia (Dr. Wolf's practice nurse and our personal cancer center angel) arranged for Dr. Wolf to wait 3 minutes between giving the lidocaine and doing the biopsy. I know when they take the actual aspirate it still hurts. John says it is a tugging feeling all the way down to his bottom. He still felt that, but the process of the needle going into his back did seem less intense. The results should be back by late Friday, but possibly not until Monday when John has another appointment. I decided I was not going to call this time since I am really confident that John is still in remission. John's blood work looks great and he is gathering more energy each day. If I do get the results Friday I will post early so all who are reading this will not have to bite their nails until Monday. The other good news is Dr. Wolf lowered his prednisone to 5 mgs. twice a day. Soon John will be off of it all together and John will get his slim face back and lose some of the weight he has gained. John's rosy cheeks I mentioned last time are still rosy, not worse or better so no one is worried that it is GVH of the skin. And if it is, it is a very mild case. One last thing, Dr. Wolf heard about a doctor in the East Coast who gave his marrow up for a young man. Apparently very prominent in the doctor world even though Dr. Wolf does not know him personally or his name, but he thinks it may be our guy! Everything is looking up.
One sad note to the week is PJ lost her battle last week. I have to say I am pretty mad about her dying because she really wanted to live. I think her dying is in direct relationship with the terrible care she was receiving. PJ was in the military and had to put up with veteran's hospitals where she didn't even get the choice of doctor. Her doctor would have to try 3 or 4 times to get her bone marrow. And the ironic thing, the day PJ died was the day her blood began to show response to the drug they originally refused her. This means if they had given her the drug in the first place perhaps her body wouldn't of broken down to the point of no return. If we had Nationalized health care she could of gone somewhere else instead of where her insurance dictated her to go. I count my blessings every day we have such great medical care and Dr. Wolf as John's doctor.
