A Busy Month

December always goes by way too fast. But we are having fun and happy that John is not inpatient. Last year at this time he felt so crappy. Chemo was wiping him out and he also had pneumonia. So this year is a little better :) No chemo and hopefully no pneumonia. So far John has only had a few little colds and 2 low grade fevers. 

John is slowly feeling better. He is still pretty tired, sleeps in and if he doesn't takes a good nap. He is still nauseas some days and they are trying to figure out why. We are all grateful for the energy that he does have. 

John had an appt today to do a test to check his hydro cortisone level. They are wondering if he is deficient in that. We have the results but don't really know what it means. They will call tomorrow and explain it. His numbers are all fine. His liver enzymes were higher last week and gratefully back down today - those ones always worry me and are the first ones I check every week.  John does have every other week appts but sometimes it doesn't work that way. We were in today and 5 days ago and again in one week. Just depends on tests. 

We had a family Christmas party and I wanted all the kids to do a pyramid, and then changed my mind. But, Isaiah really wanted to - so this is what we did :)  Yes, John is finally getting his hair back and loosing some of that prednisone water retention. 

Today we went and saw "Frozen" - a really great movie. We have been to a few movies recently. John wears his mask and if it is not crowded and we have a "bubble" he takes it off.  We take a blanket to put over the seat and it works good. We always go mid day and it has never been crowded.

We hope and pray John keeps improving so we can take our Disneyland trip in 2 months. The kids are so excited. As long as he stays how he is, we can go.

DAY 200!!!

YAY - Day 200 is today. 200 days post transplant. So, the second hundred went by a lot faster than the first hundred :) I never thought I would keep track of things like this. Sometimes I still look at life and can't believe what is going on. I look at everything and feel like I am an outsider looking in. It is so odd. But, it is really happening. John really has cancer, he really has had 2 transplants and we really are keeping track of every day :)

Fortunately nothing very exciting is going on. There are a few things John is dealing with.  He is having swelling again in his feet and ankles. We are not sure what from, but he tries to keep his feet up as much as possible. He still does not have much of an appetite. Every once in a while he will be hungry and want to eat though. He does eat, just not much. He also has had some nausea the past few weeks. Some days it is pretty bad and others he does not have any. He has thrown up a few times in the past few weeks. It could be mild GVH, or even possibly from chemo (almost 7 months ago??).  Who knows, but as long as it is not consistent and bad the Dr's are not worried. And that is the worst of things right now. Oh and, John had another bone survey. Where they basically take xrays of all his bones.  His one at his 100 day appt said his bone lesions were worse and that was weird. So, the docs wanted to repeat the test 3 months later. And the results were good. Some lesions were showing improved bone density and others stayed the same. So, that was good news.

John is feeling ok. Still some fatigue and he likes to sleep in :) And usually nap too. But, he can drive any where now (although sometimes he does not want to). Still appointments every other week and he LOVES having his central line out. It is still weird for me to have that thing out. It was just part of him. We have had several kids with colds and we are trying to keep John away from them.  Luckily he has not had a cold or anything like pneumonia.  Hopefully we can make it through this winter with out any hospitalizations. John is excited for Christmas and hopes to be feeling better this year than he did last year.