4/26/16-There is a man next to us getting instructions from a nurse…"you will get 3 shots of Neupogen three days in a row and then you will come in so we can harvest your stem cells". He looked uber nervous as the nurse continued, "we are not taking your bone marrow under sedation like we used to"... This man is a bone marrow donor and is in the process of giving new life to a lucky recipient. I reflect on how humble and grateful we are for Steven's new bone marrow. He is doing really well! There is nothing like good Midwestern stock and an excellent HLA match! We are almost 7 months post transplant and so much has happened and there is so much more that needs to happen. We now know why COH gave us information in small amounts... this is the most overwhelming process we have ever experienced. Even in small amounts, this has been daunting, joyous, depressing, confusing, and awe-inspiring, all at the same time.
I wait in the patient/caregiver library while Steven is getting his blood drawn. Several anxious couples are waiting for their first of many classes. Today is a bone marrow class for all new patients and their caregivers. It seems like yesterday that Steven and I sat in that class. They have no idea what they are in for but have taken the same leap of faith that we did, that it will all work out for the best. You have no choice and have to work through it. It's been a year since Steven's diagnosis and the reality of how fragile life is. Unless you have walked in our shoes, it is hard to imagine how consuming this has been.
Lazarus…I mean Steven, has had his blood drawn and we are waiting for clinic. He experienced hives over the weekend and had to take Benedryl. It could be graft vs. host disease. They are slowly reducing one of his anti-rejection medications, Tacrolimus. It is exciting that they are reducing this but nerve racking at the thought of GVHD. Mouth sores don't seem to be an issue anymore but rashes are.
The lab results are back and his hemoglobin is 10.1 g.dl, WBC 3.1 and a normal ANC. We are living large! Our doctor said that Steven is doing really well. How well? Steven has been working 2 days a week. This is huge considering when we started this process, our doctor said he recommends his patients do not go back to work for a year. Although, he is pretty exhausted when he gets home and usually takes a nap. It is just another reminder what his body has gone through.
Steven has started physical therapy twice a week. Between the loss of muscle mass and neuropathy, he is working hard to regain what he has lost.
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