ROLL CALL.... We need to get this group going...

[Guest guest]

Hi!!!! I'm Tania.... Mom to Nate, 4 years old, DS, diagnosed on July 7, 2009

with pre B ALL.

I'm married to Ken and we live in Schaumburg IL. We are being treated at

Lutheran General Hospital in Park Ridge IL.

Nate has just started Interim Maint in the study AALL0331. Nate was pretty

much in the hospital for the first month of induction. He gained 16 lbs in 3

weeks d/t Dex... He has lost all but 2 lbs since then and is doing pretty

well. Thursday was day 1 of the next 3 years until we are done with therapy.

I am a nurse and am presently working part time. Nate had a trach for 6 months

prior to his diagnoses d/t a massive airway infection that still is unexplained.

Things just went down hill after his adenoids were taken out in November of

2008. I think it was all tied in to the Leukemia, however they did do a BM and

no blast were seen... just some myelodysplasia which they attributed to the

infection.

Once things settle down I will be working on starting a support group for dual

diagnosis of DS and Leukemia in conjunction with our local parent support group

Ups for Downs.