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My son has SAA. When I look back, there is one thing I would do differently. I would take my son to Dr Neil Young at NIH before any treatment is given. Dr. Young is amazing..unbelievable knowledge with SAA, easy to understand, and clearly describes the options available. The patient is his #1 priority. If Dr Young does not feel the clinical trails available at NIH are in the patients best interest, he will explain what he feels is the best treatment and where that treatment is being offered.
I know first hand that the travel to NIH can be a challenge..for example: traveling with a low ANC. Yet I would make the trip every month if it was needed. It is definitely worth the time and effort. As our local hematologist told us: you really only have 1 chance to get the diagnosis right. It is awful when you find out 1 year later you have been given the wrong diagnosis followed by the wrong treatment. Keep in mind, it can be a challenge to get into NIH. Your best chance is before any treatment is given. The care at NIH is free.
May the Lord bless you and all with bone marrow failure.
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