So, it has been some time since I last wrote about B and our adventure. February to be specific. Since that time we have had a daughter get married, then get pregnant, and a niece get married. Life has such a way of continuing even if it has slowed down for some of us. This is my second summer of not getting in the ocean. Hard to believe it now that I am reflecting on it. It's not so much that I cannot, but I would feel really guilty because that is all B is dying to do and he still cannot.
Earlier in the year B starting to work a little, only about 1 or 2 small jobs a week. I have to say that this was nice to get a little extra income, since we have been living on a squeezed budget for the last 2 years. Just as B was getting a rhythm, the Docs decided to try to lower some of his meds. For a few weeks this seemed to be successful. He was experience severe joint pain to the point of possible considering a wheel chair. This pain was a direct result of some of the chemo meds. They changed that out and he started to feel relief almost immediately. Then after a few weeks of lowered immuno-suppressants, we begin to see the skin rash kickup, and it begins to go through its courses of redness and internal fire, then peeling and tenderness. Then we notice his stomach having some fits and before we realize his mouth is full of GVH. In case you have forgotten, (wish I could) GVH is Graph versus Host and is common in transplant patients. The graphed cells are fighting with the hosts cells and are embattled in a type of war. For cancer patients this is good as it tend to fight away the tumors. But for B, he doesn't have cancer or tumors, so the Docs are baffled by the length in which he has suffered with this. So after the rise of various GVH symptoms, up go the meds, which is exactly what we are trying to avoid. It even got so bad that they had to put B back on "steroids".
This was scary for me. Fortunately we have not has a recurrence of any prior steroid activity. Thank Goodness!!
So we are now on the eve of another phase of recovery and a new treatment. When you think of it all this stuff is a bit sci-fi. For the next 6 months he will be having his blood treated with UV rays. It is quite a process and commitment of time and hiding from the sunshine but we are told they have had great success. So it is with this in mind that B will subject himself to hours hooked up on both arms to a apheresis machine while it draws blood out and separates it, treats one part of it, then UV infuses it and finally mixes it all back together and puts it all back into him. He will be highly sun sensitive and cannot drive while being treated on those days. He has to give up some freedom now, to gain some freedom in the future.
Some people say we have been through a lot. And in reflection I would certainly agree. However, I never really stray far from the thought that B is here. He walked his daughter down the isle and will soon see his first grandchild, he attended his nieces wedding and is seeing our youngest go to college. He would not have experienced these events if we had chosen a different direction. So for that I am grateful. If you think of B and his new bionic blood, would you take a moment to keep him in prayer? This is what got us through that first very difficult year and we would so appreciate that kindness from you all.
Until next time,
Hopeful Believer.
PS, photos are before, during and after treatment!
