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Adolescent w DS and ALL

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Hi,

My name is Nicki . Our daughter, , has trisomy 21 and was diagnosed with pre-B ALL on May 12. Her phenotype is t(1:19) q23 p13 trisomy 6 and 21. I believe she is hyperdiploidy as her count was 48. Her tumor load was 97% on the first bone marrow and 30% on the second (diluted) bone marrow. Blasts count in blood was 53.

She is having a terrible time with chemo. They've stopped the chemo. Her liver is twice the size it should be. She's put on 15 pounds in water since we were admitted again last Saturday. She has all the pain that is associated with vincristine and she feels like poo. She's going to have another bone marrow next Wed and they'll decide then whether or not to start her back on prednisone. Then the following week if her liver is better, they'll add 1/4 the dose of the vincristine back.

Is there any one out there with a similar experience who might share information?

Thanks in advance,

Nicki

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