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Let me preface my reply by saying tha I am not a medical professional, just a mom who has done lots of research since my daughter was diagnosed 3 1/2 years ago at age 19.
1) I believe Dr. Paquette at UCLA is considered one of the best AA specialists on the west coast. The Fred Hutchinson Center/NW Cancer Care Alliance in Seattle are transplant experts. The National Institutes of Health is a resource or Dr. Brodsky at John's Hopkins is another AA expert. One of the premier pediatric AA experts, especially as it relates to transplants, is Dr. Margolis in Wisconsin.
2) I can't speak to the care in Canada but it might be something to consider depending on the insurance situation.
3) The usual protocol for treatment is to seek a matched sibling transplant. If that is not available then ATG is typically the next step. If no response to ATG then they would consider a 2nd ATG or a matched unrelated transplant. Dr. Brodsky promotes an alternative to ATG in high dose cyclophosphamide (Cytoxan), which mimics the preconditioning of a transplant without the transplant itself. It is not impossible for parents or cousins to match a patient but it is highly unusual. In my daughter's case my husband and I were not tested because they indicated that they could tell from the profiles of our children that either one of us would be no better than a half match. We went ahead and registered anyway in case we could help somebody else.
4) Before proceeding with ATG from a given facility, ask about what kind of experience they have had with administering the treatment -- number of patients treated, what protocol (number of days, etc.) they use. If your cousin is in the LA area there are most likely more choices for care than some other areas. We were told that our daughter was the first to receive horse ATG at Sacred Heart in Spokane, WA and the nurses were very obviously not comfortable with the process, which was following a protocol provided by NWCC in Seattle. We ended up in intensive care the second day simply because the hives from the first day scared the floor nurses so badly. Believe me when I say that treatment is scary enough without the worry that your care givers don't really know what they are doing.
5) Misdiagnosis is a posibility in nearly any disease -- especially one so rare. My understanding is that AA and hypo MDS are often difficult to tell apart. Diagnosis of AA is based on blood levels from CBC, along with cellularity level and cytogenics from a bone marrow biopsy. Without details of what those showed for your cousin it would be hard to know whether AA seems a reasonable diagnosis or not.
I want to encourage you to keep asking these questions and thank you for coming alongside your cousin's family they way you are doing. A diagnosis of a life-threatening disease often leaves folks in so much shock that they can end up quite a ways down the path before emerging brave enough to start asking those questions.
Please let us know how else we can support you and how your cousin is doing!
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