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| Our baby's name is Avrohom (we call
him Avromi) and he was born on January 3, 1999. It was evident that something
was wrong when he was born, but the doctors thought it was something called
hemangioma (related to port wine stains and other birthmarks). There was
a spot on his right chest wall just under the arm that just grew so rapidly
that it amazed us all. But hemangiomas do that, so no one was concerned
until the doctor decided to biopsy it because it seemed hard in the center
and was not uniformly soft as hemangiomas are. Also, treatment with cortisone
did not shrink it as was predicted. The biopsy, to make a long story short,
identified the hard spot as a tumor, at first thought to be rhabdomyosarcoma,
and it was staged at IV because it had metasticized to liver and other
skin surface. We switched hospitals at that point and went to Johns Hopkins
to work with Cindy Schwartz there. He has had several different kinds of chemotherapy. He received carboplatin, vp 16, cytoxin and something else, but I have to check with his parents. He received chemo for two days and then returned home. About a week later he needed blood and began having the reactions we all have come to know. Three weeks after chemo he was well enough to return for another chemo. During the time he was treated, the tumor shrank to the point that it was no longer visible on CT or MRI scans. Then he was readied for the stem cell transplant which was done Oct. 4 and from which he is presently recovering. Right now he is fighting a very bad infection that has puffed out his neck and made it so sore that he cannot bear the touch of even the softest material on it. He is getting nutrition by IV and is on a pain pump. He developed a rash from the pain medication, and benedryl has been used with a bit of success, but they are using something else now which seems a bit more effective. |
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