SO SO glad to have John home. Hospital living is crazy!!! We all kind of get used to it, but it is not the best. Well, it is the best for John and what he needs :)
He probably broke some sort of record and was home having only been in the hospital for 25 days for his Allogeneic transplant. Only 4 days longer than for his Autologus transplant. He did awesome. He also never went on TPN which was one of his goals. (and super rare, like 1 out of every 30 patients with an Allo transplant can manage to do that). He came home with a good amount of energy and wanting to do way too much. He does nap every day and sleeps about 10 hours a night. And at least at home he gets to sleep without being interrupted every 2-4 hours. He is having issues eating food though. When he started getting mouth sores he drank all his calories with Ensure and Boost drinks. He did lose about 20 pounds and the last time he weighed this little was probably about 15 years ago. I am just glad that he had the weight to lose and was not skin and bones going into this. And ya, he is pretty much skin and bones now. So, the drinks were great. The chemo has ruined his taste buds (again) and nothing tastes good at all. Last time baked potatoes were kind of his go to food. No, nothing tastes good. But for some reason the drinks are ok. He is gratefully maintaining his weight of 185 pounds but only consuming about 1500 calories a day. He does try food every day, he says it all tastes like dirt or cat puke! We are also walking about 1 mile every night. Hopefully soon we can increase it to 1.5 miles.
We are all taking it on day at a time. John is able to do some things around the house, but that list is limited. He has NO immunity and has to be very careful. He is not allowed to mow, weed, dust, vacuum. He is allowed to do laundry :) He should not go any where public for a long time (months). And should not be out in the sun. He can sun burn super easily right now and that can bring out T cells and that can cause GVHD! So far he does not have any GVHD. Which is pretty much good. You kind of want a little bit because that also means you have GHM (graft vs myeloma). Which you do want. You do want the donors cells to be fighting the cancer cells. If he does get it we just hope it is easy to treat skin rashes :)
All of our lives have changed a lot. We have to be even more careful with germs and hand washing than we were before. In about 1 -2 years John will actually be re immunized as if he were a baby. Since being home we had 2 kids with fevers earlier this week and last night Abby was puking and has a fever!!! It is crazy how much our kids have been sick since John has had cancer. I pretty much quarantine the kids to their rooms and sanitize like crazy. I have to clean all of our ceiling fans twice a week, sanitize all 3 bathrooms every day (mine and Johns usually twice a day), sanitize the kitchen once a day, dust the whole house once a week. And John can not be in the room when I dust or vacuum. Every time we come in the house we all wash our hands. I have to wash our bed sheets twice a week. I thought I was pretty good at cleaning before, but I was not this good.
For now John has an appointment once a week - probably for a very long time it will be at least once a week. They do a full blood work up test and check vitals and he meets with a Dr. and a PA. Every thing has been pretty good so far. A big thing to watch is his liver! But in one of the Dr.'s words they will "watch him like a hawk" :) We LOVE all of John's Dr.'s. They are great and super helpful and are doing everything they can for John.
We recently realized how blessed we are to live here. After you have an Allo transplant you HAVE to live within 45 minutes of LDS Hospital for at least 100 days past transplant. The main reason is that if you go septic you could die in that amount of time. They want you close if you need them. They do not want you to go to any other ER or hospital. I have been told to not call 911, but just put him in my car, call East 8 and get him there. The Dr.'s there do not like other Dr.'s seeing their patients. They know the history and they will be the ones to help! Yes patients do go to ICU sometimes. But East 8 will still have a Dr and PA check on you daily. We live 20-25 min from the hospital - we are so glad we did not have to move closer.
John is excited for his 41st birthday next week. He is hosting a bone marrow drive on his birthday. He is super excited about it and his goal is to add 100 people to the registry. I can not believe how much has happened in this past year. Last year for his 40th birthday I surprised him and took him to San Francisco for the weekend and to a Giants game! That seems like forever ago some times and other times seems like it just happened. Our new goal is to go to Paris for my 40th Birthday!
Now our trick is to keep John home and out of the hospital. But any fever, flu, pneumonia symptoms, or big drops or raises in his counts and he will be admitted. Getting past the first 100 days is the toughest part. We are at 22 days past transplant!!
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