"Just the Facts"-- 2.5 weeks of GVH rash...again, and some new medicine, we think it's working, lots of sleep, but getting a clear head and despite the medicine blood levels seem to be holding!
Well, I know it has been 2+ weeks since I have written. It's has been a busy 2 weeks for me. I took a home vacation, worked the Del Mar fair for a friend and gave my daughter some much needed time off from taking B to the docs and infusion. B and I had a couple full days at infusion and had 2 doctors appointments during that time. We also were able to get out to the cove for a picnic on a beautiful midweek day. So life is a bit back to normal now, at least what we think is normal for us. I'm back to work, B is on his usual 3 times a week schedule at infusion and a doctors appointment once a week. During this past couple weeks we have been battling the GVH rash that seems to linger just on the cusp of explosion. The Big Doc put B on a new type of medicine for this. The intent is to be able to reduce the steroids (which we had to increase slightly) for this latest rash invasion. A couple of the side effects of this new medicine is it makes B really tired. He can take a 2 hour morning and afternoon nap and still sleep at night. He is also very sensitive to sunlight and cannot be in the sun at all. It also keeps him very immuno-suppressed and lowers his blood levels. The upside is we are seeing the rash recede, and so far the blood levels seem to be holding. We take this as encouragement as they should be diving with the new meds, but aren't, so that means that the blood super cells are working in the bone marrow and producing blood, yay!
We have a some extra doctors appointments in the next week to track some of the additional medicines B was put on about a month ago for some of the side effects. Also it is good to be checking all this out. We also will see his new hematologist. You may recall that the doctor that was treating him in 2010 and really moved him toward the bone marrow transplant treatment, died unexpectedly in December. We will be seeing the new replacement. This new doctor has exposure to The Bone Marrow Transplant Program and the delicate process a patient goes through, when essentially their entire blood system has been exchanged out. I recently heard it described this way and it put a whole new perspective on what really is going on and how significant the process is. We are hoping for improvement now week by week, just making sure the rash is beaten back. That seems to be the current enemy on this journey. Along the way, we have been encouraged by so many. When I address this blog, I can think of so many names and faces of those that have supported us in so many different fashions. It has been a total blessing to witness. Not that I would elect to go through this again, but I am not sorry for the gifts of so much love and caring and friendship shone.
Until next time,
Hopeful Believer.
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