Day 50
"We" are now half-way home. 100 days post-transplant would have John released to return to Atlanta by Labor Day. We are conspiring to negotiate a slightly earlier date for him, if his condition cooperates. As we work on working our way back, I'm making my first trip back from Seattle since the beginning of April and actually will be IN the office. Tuesday will make 8 months to the day since John was diagnosed, and a bit over 3 months since we came out here.
Debbie will be here for the few days I'm gone as John's caregiver. She is, of course, fully trained in the long and complicated medical side of things, even though John can handle well the day-to-day routine IV, pills and most trips to the clinic. Watching and responding to problems is the more important part of the role, and also the "care" part of the role.
I think that both John and Debbie are nervous about me being away. She is just the tiniest bit intimidated by the way he can withdraw, which is not at all her style. At times, John enjoys a bit of verbal jousting, all purely for fun. Debbie has more than enough brains and guts to respond, but is a bit afraid to do so. My advice to her has been that kids are like wild dogs - you must never show fear or they will tear you to pieces.
As for me, the 6 hour trip to Mt. Ranier last Saturday was by far the longest I've been away from John in many months and five and a half will be a lot of time to worry about everything and nothing. It is a healthy part of the process for John though. We had a long conversation Thursday about how and when he might be able to transition himself back to "normal" life when we return. Of course, it all depends on his health, but after a time with us, he will want an apartment, perhaps a part-time job, and is shooting to return to finish at Emory in the Spring semester beginning next year. Ideally, he will have taken a year off from school the way some students do, but for different reasons.
Yesterday afternoon, we got a call from the clinic saying that they had detected CMV in his blood sample that morning. CMV is a virus that most everyone has had, but it happens to act like kudzu in the South when it finds a transplant patient and can be dangerous. Fortunately, they found it so early that there was only one cell detected in his blood sample and they reacted immediately, beginning IV treatments before we even knew what was going on. He will receive IV antiviral treatment twice a day for a week and once a day for two more. This shouldn't become a concern and shouldn't delay John's recovery. Just another bump marking the point when we are half-way home.
Cancer is a disease that one person has, but everyone around him lives with. John passed on to me a webcomic that tells one family's story in a very nice way. The link is at http://www.momscancer.com/eisner.htm and is worth the read.
Debbie will be here for the few days I'm gone as John's caregiver. She is, of course, fully trained in the long and complicated medical side of things, even though John can handle well the day-to-day routine IV, pills and most trips to the clinic. Watching and responding to problems is the more important part of the role, and also the "care" part of the role.
I think that both John and Debbie are nervous about me being away. She is just the tiniest bit intimidated by the way he can withdraw, which is not at all her style. At times, John enjoys a bit of verbal jousting, all purely for fun. Debbie has more than enough brains and guts to respond, but is a bit afraid to do so. My advice to her has been that kids are like wild dogs - you must never show fear or they will tear you to pieces.
As for me, the 6 hour trip to Mt. Ranier last Saturday was by far the longest I've been away from John in many months and five and a half will be a lot of time to worry about everything and nothing. It is a healthy part of the process for John though. We had a long conversation Thursday about how and when he might be able to transition himself back to "normal" life when we return. Of course, it all depends on his health, but after a time with us, he will want an apartment, perhaps a part-time job, and is shooting to return to finish at Emory in the Spring semester beginning next year. Ideally, he will have taken a year off from school the way some students do, but for different reasons.
Yesterday afternoon, we got a call from the clinic saying that they had detected CMV in his blood sample that morning. CMV is a virus that most everyone has had, but it happens to act like kudzu in the South when it finds a transplant patient and can be dangerous. Fortunately, they found it so early that there was only one cell detected in his blood sample and they reacted immediately, beginning IV treatments before we even knew what was going on. He will receive IV antiviral treatment twice a day for a week and once a day for two more. This shouldn't become a concern and shouldn't delay John's recovery. Just another bump marking the point when we are half-way home.
Cancer is a disease that one person has, but everyone around him lives with. John passed on to me a webcomic that tells one family's story in a very nice way. The link is at http://www.momscancer.com/eisner.htm and is worth the read.
