I just hung up the phone with Dr. Harris and Margaret O'Neill, our social worker at Tomorrows Children's Institute. I have to admit, when they called, I grabbed a pen and paper, sat down and braced myself for something horrible.
Dr. Harris said that yesterday's MRI did not confirm this is a tumor. It could be an organizing hematoma but it might be liver tissue continuing to heal. The increase in AFP is what they are concerned about but really, no tumor which means NO SURGERY!
I asked about his hope-meter and Dr. Harris said he is more hopeful today than he was on Tuesday.
We know that AFP goes up before disease shows up so we need to closely and frequently monitor Sylvie. Moving forward, she'll have a CBC and AFP blood test weekly for the foreseeable future. Monthly, she'll have an MRI of her liver and a CT-scan of her lungs.
He then went on to tell me about a to-be-published report on hepatoblastoma by Dr. Howard Katzenstein at Emory University who has been treating kids with recurrent hepatoblastoma with vincristine & irinotecan with positive results.
Therefore if Sylvie's AFP continues to rise significantly and we will don't see the tumor, she will most likely go on this maintenance (it's given via IV or orally). If the AFP drops, we won't do anything.
I would like also say that Dr. Howard Katzenstein is the son of my dad's best friend and fraternity brother from college. Very small world indeed.
I had to ask them, "Is this a good thing?" and they said YES!
AHMENNNNNNNNNNNNNNNNNNNNNNNN
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AMEN!!!!!
ReplyDelete-Kurt