Adrienne's bone marrow transplant doctor at the children's hospital, Dr. Agarwal, called yesterday to talk about Adrienne's upcoming DLI. Based on the recommendations of Dr. Negrin, head of BMT at Stanford, and Dr. Flowers, head of long term followup at Seattle Cancer Care Alliance, she has agreed to move ahead. Dr. Agarwal expressed her continued concern about GVHD with DLIs but her experience is in the leukemia setting when the patient does not have 100% donor cells. In that case, the risk of GVHD is very high. Both Dr. Negrin and Dr. Flowers have more experience in the setting of Hodgkin's Disease when the patient has 100% donor cells and feel that the risk of GVHD is minimal and, if it happens, it is likely to be not severe and of a chronic, easily controlled nature. At the cell dose Adrienne will receive, Dr. Negrin has not seen any GVHD and Dr. Flowers has seen some but it required treatment in only one instance.
Adrienne will have five more chemos before the DLI, which will happen the last week in July. She will be followed closely for the first 60 days during the period of risk for GVHD. Obviously, she'll be going to college at the end of August so she will be followed at City of Hope. Her oncologist wanted her to go to Children's Hospital of LA but that would be a 50 minute drive each way, with no traffic, so it is not really feasible.
Adrienne is definitely asserting her independence in making her own medical decisions. She keeps saying that she'll be 18 soon and can do what she wants. I was worried that she might decide she doesn't want more treatment but actually, it's the opposite. When I wanted to wait before the start of chemo until we had our vacation in Mexico, she wanted to start the next day. When I was unsure about the DLI, she said she wanted to take the risk and have it. We all know how smart she is and she isn't afraid to ask questions or to state her opinion. Sometimes the doctors looked shocked, but also mildly amused, at her comments and questions.
Adrienne is looking forward to her prom. We have all of the accessories (shoes, purse, sweater) now so she's ready to go. The dress will be hemmed and ready by Monday next week. We'll be sure to take lots of pictures.
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