We had two appointments scheduled for today. One was with Jewish Family Services to discuss what they have available for Hannah and our family, and the other one was with Dr. K., the hematologist/oncologist that Dr. G., the genetics doc, wanted us to meet with to get us familiar with the possibility of a bone marrow transplant.
I’ve cancelled both of them.
Dr. K’s appointment I cancelled last Thursday. A bone marrow transplant is so far down the line for Hannah. Not only would the Cerezyme treatments not have to work, but the Zavesca/miglustat (second type of treatment for Gaucher’s Disease) would not have to work. Even then, bone marrow transplants haven’t proven routinely successful with Gaucher’s Disease. I don’t know why Dr. G. wanted us to go see him Dr. K. so soon, even before we started the Cerezyme. So my husband and I decided we will meet with him IF we need to at a later time.
As for JFS, we are still very interested in working with them and seeing what they have to offer. But the truth is, I’m overloaded right now. We don’t know what we are dealing with for Hannah yet (type 1 or type 3), so it is really hard to talk about what kind of services, if any, we would require. I’m so thankful that they are there, and I do plan to visit with them after meeting with Dr. S., the Gaucher’s expert. Hopefully by then we will have some more direction.
You have so much strength. Reading your latest post, I realized how frustrating it must be to have to wait, to find a diagnosis, to start treatment, to see if treatment works, etc. You have been so strong through all of this, you are an inspiration to us all.
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