11 months post transplant

WOW - tomorrow will be 11 months since John had his Allo transplant! I am not sure if it has gone by fast or slow - depends on how I am looking at it :) This means that in about a month he has his 1 year work up with a ton of tests!! Kind of nervous about it.

I finally got a decent family picture on Easter. We were quickly taking some pictures with my camera on a tri pod before beading to 9 am church. No Abby is not wearing heels - she is that much taller than me :)

Also, it had been a long time but John and I were able to go to the temple together. I have been pretty good about going monthly, but that has been a little hard for John. He has been several times in this past year, but it has been a long time since we have been together. 

As for an update: John is doing ok - he has been better. About 2 weeks ago we noticed that the skin on his back and sides felt bumpy. It was just the day before an appt so we had them look. It was decided that it was mild GVH of the skin. It was not real red like it can be, and it was only on his back. So they increased his cycle and gave him some cream for it. Well, it kept getting worse and spread to most of his body. So we had to go back (and saw our least favorite PA who was helpless). Ended up with more cream and that was it :( But, luckily it is getting better. John has been having trouble sleeping because it is so itchy, but sleeping pills and benadryl help with that. He has another appt tomorrow and we will see what they say. He has also been nauseas this weekend - which is really weird. It has been a long time since he has been nauseas. The GVH could be moving to his gut, but John doesn't think it is. Who knows?? John's body does its own thing.

John loves teaching voice and stays pretty busy with that. They have their first recital this week and John is excited about that. It has been tricky for me though. John teaches every Wednesday and Thursday night. I did not realize how busy those nights were. And then add that John can not help at all and it is HARD! Abby also has voice lessons Wednesday nights and Isaiah has baseball every Thursday and cub scouts and other things are always thrown into the mix. Then I am also trying to help with homework, make dinner, clean up, keep the kids quiet (because John teaches in the room right by the kitchen), get kids bathed and in bed.  It is just crazy. But, I am doing it.

It has also been really hard lately only having one car. For so long it was not a problem because John wasn't driving or wasn't really going any where. Now, he always needs the car for errands. Or we have one kid that needs to be somewhere with me and another kid that needs to be somewhere else at the same time. It is tricky!! But, we aren't getting another car yet. The deal was we would get another car when John goes back to work. Because we can not afford one until John is making money. So, we get creative for now and are grateful that our church most of the kids activities are literally right across the street :)

Overall everything has been kind of hard for John. It is hard that this is a cancer that takes a LONG time to "treat". So many people get cancer and have their chemo, radiation, surgeries, recoveries and comes and goes in a matter of weeks to a few months. John is now at almost 19 months. He has not worked in over 14 months. Most of the time he feels ok. But still low energy sometimes. His Dr. said he could go back to work part time if he had the energy. And since he is teaching voice, that is part time. He still does not have much of an immune system.  And with this GVH his cyclo went back up and it was being tapered. So, now it will probably be 4-6 months before he is off it. He is tired of taking meds every day, tired of not being able to go to church, tired of not being able to work, tired of being tired. BUT, we are both grateful he is still cancer free and overall his health is pretty good. It is just interesting how every stage of this is SO hard. Every stage is so different, and has its own challenges. 

Much easier this time

John was able to baptize Isaiah on Saturday :) Our last one, that is kind of weird. And yes, this one was much easier for him than Jenna's was. It is amazing how much can happen in 1 1/2 years. When Jenna turned 8 John was just diagnosed with cancer. He literally made it to her baptism straight from the hospital because of pneumonia. He was so weak and tired and looked so sick. Isaiah's was no big deal. He felt great and had plenty of energy.  It was a great day.

So ya, overall John is doing fine. He is definitely not up to normal energy levels, but getting stronger every day. He is loving teaching voice and his students and they are getting ready for a recital in a few weeks. He still has appointments every other week and this week everything was great. Our newest thing is he has skin GVH :( If you have to have GVH the skin is the best place, but still not fun. Way better than the gut though :) It is mild but still there and uncomfortable. It is mostly on his torso. A real bumpy reddish rash. Also around his eyes are swollen and pink. Unfortunately his cyclo had to go back up. He was only a few months away from being off it as he had been tapering. But, oh well - if all goes well, probably 4 - 6 months now. We are hoping the GVH stays on his skin and does not spread anywhere else!!!

John is so anxious to get back to church and do "normal" things. That is the hard part right now. This Sunday he is going to church because it is Easter, but then will have to wait a few months before going again. The Docs said late in, early out and no shaking hands :) Gratefully we are at the end of cold/flu/RSV season. So, not as many germs to worry about. It still amazes me how much our lives have changed and how much of a germaphobe I am now :)