Trials and tribulations of a patient in search of a bone marrow transplant

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Thursday, March 6, 2008

Home Sweet Home, sort of

Thought you might like to see a photo of Steve at the hospital with his Siamese Twin, connected at the neck!

After over three months in the hospital, last Saturday Steve's doctors surprised him (and us) by allowing him some time out of the hospital for a sanity break while waiting for a donor. It was quite a scramble to get ready for him on spur of the minute notice, but the troops were called in and we managed. Because Lisa and the children were sick, Steve went home to his mother's. Everything he might come in contact with had to be cleaned with antiseptics. Lots of restrictions on foods. Nothing from buffets, sliced meat and cheese from packages rather than the good stuff from the deli, juices bottled not fresh.

Basically, Steve's blood counts were starting to come back after the last round of chemo. Since no marrow donor is ready, the doctor decided he needed a break to build up his strength before whatever the next round of treatment brings. They put him on another "biologic" chemo which targets specific cells to try to keep the leukemia in check until they can hit him again hard pre-transplant. Evidently the leukemia becomes resistant to the chemo after multiple rounds so they want to save the big guns for when they need them most.
Steve has to report back to the Transplant Center every other day for blood checks and transfusions. His first visit back showed his platelets were extremely low, so they tanked him up a bit. Yesterday's visit showed they were a bit better although still low and since no matched platelets were available, they decided to wait until Friday for more platelets and probably whole blood, too. Depending on his Friday counts, they will decide if he needs to come back Sunday or can actually have the week-end "off". It is a day by day process.
His task right now is to recuperate as much as possible and gain strength for the next round. He needs to force down food even though it does not taste pleasant and push himself a bit more each day to gain back muscle tone. He was very, very tired and weak when he first arrived. Now he has put on a couple of pounds and has a bit more endurance each day. He wears a mask when he goes out in public, exciting places like the hospital and the pharmacy. We stopped by his home on the way back to Fort Worth from the hospital, surprising his daughter with a brief masked visit. The look of surprise and then joy on her face before she threw herself into his arms was good medicine for Steve.

Now to the serious stuff, the donor which the doctors had chosen (a mismatch on the C) was notified. After having given the initial blood draw, for some reason they decided to be unavailable until 2011. This was a tough blow. I wonder if this person did not realize before going in for that first blood sample that they didn't want to give now? It is hard to fathom a refusal to donate after being notified. There is one remaining international "possible" who sent in the first blood draw this week. We are waiting to hear the results of further tests on that one. In reserve, there is that one unit of cord blood which is a single factor mismatch. The problem of the smaller volumne would result in a much longer period to rebuild Steve's immune system, requiring regular blood and platelet transfusions over the recuperation period. Not perfect, but possible.
There is always a chance that a new donor will show up in the marrow data bases. We are trying to encourage everyone to sign up to be a marrow donor NOW. Time is not on our side. To organize marrow donor drives through work, church and schools. Information is on the website.
And finally, a huge and heartfelt thank you to everyone who has helped Steve and his family during this difficult time. Donations to help with the mounting bills, grocery cards, prepared meals, website building, visits, blood donations and moving furniture and help at the house for Lisa. It all means so much and Steve is touched by how many people care and want to help. His spirits are good.



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