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Member since: Tue Nov 30, 2004, 08:08 PM
Number of posts: 21,210

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What a roller coast ride this has been ...

my husband was diagnosed with MDS RAEB 2 in May 2010, started one of the prescribed drugs (Dacogen) unfortunately that did not slow the progression to acute myeloid leukemia. He then had induction chemo and a bone marrow transplant from his sister (in reality a stem cell transplant, T cell depleted) in October 2010 and has been doing well. No real GVHD, but complications from a reactivation of the Epstein Barr virus and subsequent treatments with Rituximab for EBV Lymphoma have played havoc with his WBC. We're still waiting for certain levels to return to a level where he can begin to receive the childhood vaccinatons, all wiped out with his immune system prior to transplant and then with the Rituximab.

So we wait and continue to watch the counts. Fingers crossed for the blood tests done today at Sloan, hoping they call in the next day or two for some vaccinations next week

We have several new friends from the time we spent at the ACS Hope Lodge in NYC (required for to be close to to the hospital for 100 days post transplant) what a blessing it was to have that available, and we are thankful we had an insurance policy which allowed treatment from one of the premier cancer centers. We met others who did not have such access

With AML and a bone marrow transplant there is not much time to shop around for the "best" transplant center as time is of the essence, we chose to stay closer to home because that is where we began ... and there was not much time to search for "the best." We spoke with the NIH as well, but as the doc at Fred Hutchinson in Seattle said in a phone consultation, Sloan Kettering is not "chopped liver" and the window of time might trump the medical facility and approach. So you go with the flow and are swept with the tide.

We're looking to sell our home, those out of the pocket annual maximums really hurt, stopped any renovations to get ready for the sale as the doc said that was one of the last things a bone marrow transplant could be around. Fortunately we have a family member that stepped up to the plate to help with financial matters, they live in a country with socialized medicine, and they said the most important thing is to focus on getting better, not medical bills. What a novel concept!

A short intro of where we have been and wishing all those on this roller coaster a good outcome. My Mom had cancer and I've had cancer as well, not a roller coaster that we choose, but we are on this ride together.

A Healthy New Year to All, takes on a whole new meaning when you have been there.

Step by step

Posted by slipslidingaway | Wed Jan 4, 2012, 12:28 AM (106 replies)
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