Wednesday, July 3, 2013

The Official Diagnosis: Very Severe Aplastic Anemia

Over the past week, Ryan has had about a dozen blood draws, a bone marrow biopsy, a red cell blood transfusion and three platelet transfusions. We were out of the hospital for a few days, but at today’s blood draw, his platelet count was down to 4,000 (should be around 250,000) so they have re-admitted us.

The doctors seem confident that they have ruled out Leukemia. I was so relieved at this until I started researching what the current diagnosis seems to be – Aplastic Anemia. It sounds somewhat harmless. I guess I was thinking it is similar to Iron deficient anemia and would be an easy fix… until I started researching it further… It is rare and is just as serious as cancer. In fact, the five year survival rate is lower than some forms of Leukemia. The first sentence on the Children's Hospital website for this disease reads "Aplastic anemia is serious. Children with this disease need treatment quickly to survive."

It's really hard to believe we are dealing with something so serious.

The plan right now is that we will be in the hospital the next 4-6 days where Ryan will receive some nasty chemo-like immunosuppressant medication that will wipe out his immune system. This may help prevent his immune system from destroying the cells his bone marrow is trying to make. Unfortunately, he will need regular platelet transfusions for quite some time, and we will not know for months whether the treatment is working. In the meantime, they will be putting him on the bone marrow transplant registry, as that is one of the only other treatment options available.

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