I was riding Beth home from the hospital yesterday – Lord willing, it will be the last day there for a while. A home care nurse is coming to administer her IV antibiotics over the weekend (and yours truly may get to do that on Sunday). She is still contending with some of the difficulties of graft vs host. She still has some itchies. Other problems she wouldn’t care to have me mention.
But remember, too, that it is the graft vs host effect that also works as a graft vs leukemia effect – it will continue to work inside her to attack and kill any latent leukemia, bad bone marrow, etc. That is the plan, anyway.
I love the little girl photograph of her on the left, and I look at her today, after all she’s been through, and I know, beyond a shadow of a doubt, that hers is a lifetime that’s been given to me. That is, even though I only met her at age 26, and I didn’t know her as a little girl, but everything she is, everything she’s suffered from that point till this, has been entrusted to me, as her husband.
Not long after the little girl photo was taken, she suffered a kind of triple tragedy in her life: her parents divorced, her mom came down with Multiple Sclerosis (which incapacitated her very quickly), and then she and her mom and sister were then moved to another state where they lived with grandparents who didn’t really want them and weren’t very kind about it. All of that happened within just a couple of years. It led to a hard life in which she became a runaway, was in and out of foster homes, and eventually led her to join the army. And once, as a young woman, she found security in the army years, it made sense for her as a 40 year old woman to join the army when another national crisis occurred.
God uses the things that we suffer to shape our lives. In some very real way, our sufferings are a part of us.
Beth is getting some blisters on the edges of her hands and feet — it seems as if these are nascent signs of graft vs host. We’ve been told that skin rashes are one of three distinct signs of graft vs host disease. While this sort of thing is annoying to her, it also represents signs that the immunity of the new bone marrow (and blood) that’s growing inside of her are perceiving that any signs of her old, leukemic bone marrow, are “enemy” and are being targeted, destroyed, an “mopped up” with the precision that God gave to human immune systems.
This is the third wave of medical science hitting her disease, the first being the chemotherapy, and the second being the total body radiation. Our hope now is that the symptoms on the outside don’t become too maddening, while fully enabling the work on the inside. And this was the point of all the HLA matching as we looked for a donor. The magic work in “tweaking” the “graft vs leukemia” was done months ago.
One writer with CMML wrote that she was on “decitabine 5 days a month for 9 months now. I am in remission but must stay on the chemo”. Later, she said she was “still undecided whether to go with the SCT [stem cell transplant, or bone marrow transplant] or just stay on the chemo.”
Recovery is still ongoing. Last week’s blood test showed increases in white & red blood cells but a decrease in platelets. Doctor wants me back in this week for another blood test. I’m also experiencing some lower bowl discomfort. Doctor prescribed some Prednisone and Dicyclomine. I’ve also removed all dairy from my diet and I feel much better. The possibility exists that there could be a little “Graft vs. Host Disease” (GVHD) going on but, it could also be the prophylactic drugs I take every day causing havoc with my digestive tract. Good luck with the doctors and your decision. Personally, in my case, I looked at chemo as a band-aid and the transplant as the “fix”…but that’s me.
One of the reasons why they go for a “10/10” match on the DNA (HLA) is to try to manage the “graft vs host”. You want some of it, for the “graft vs leukemia” effect. But you don’t want so much that the new tissue (stem cells and blood) rejects its new host body.