We're new

[Guest guest]

We're new to this board. We have an 18 month old daughter named

who was born with DS and TMD. Her TMD cleared up on it's own

w/o treatments at 6 months of age. Around her first birthday she got a

cold and I noticed petechiae on her face. Her platelets had dropped to

20. She had her first BM biopsy in May and another one in June. The

results were inconclusive and her platelets improved to 80 so we

stared the vait and watch game by having blood counts every 1-2 weeks.

In Sept. her platelets dropped again and we repeated the BM biopsy.

This one showed myelodysplastic syndrome, but not quite AML. We

continued our wait and watch. Last week had a cold and her

bruising and petechiae were worse than normal. We went into get her

counts and the platelets were 21. We repeated the BM biopsy on Fri and

it has come back with the dx AML. She will get her port on 12/5 and

start chemo on 12/6. I have enjoyed reading the posts here and it has

been comforting to see similar stories to ours. We are looking for a

source of encouragement as we start down this new path, knowing that

others have passed this way before us.

[Guest guest]

Hi and welcome, My daughter started with MDS too and we were watching it carefully for 6 months. It then developed into AML 2 months after her 2nd birthday. She underwent 6 months of intense chemo and did remarkably well. She is now 5 years in remission. Some tips that we found to help us through the treatments were as soon as we came home from the hospital, I would wash and repack 's suite case and mine. This way if we had to go back in a hurry for an unplanned stay we were semi-ready. I bought her 2 piece PJ's to wear. You need two piece so they can get to the port. Those hospital gowns just don't keep you warm. I also packed any favorite toys (plastic/easy to clean). Didn't bring any stuffed toys because they carry too many germs. I typed a list of phone numbers including therapists and kept that in the suitecase along with a phone card. Best wishes sp"talebearer.geo" <talebearer.geo@...> wrote: We're new to this board. We have an 18 month old daughter named who was born with DS and TMD. Her TMD cleared up on it's ownw/o treatments at 6 months of age. Around her first birthday she got acold and I noticed petechiae on her face. Her platelets had dropped to20. She had her first BM biopsy in May and another one in June. Theresults were inconclusive and her platelets improved to 80 so

westared the vait and watch game by having blood counts every 1-2 weeks.In Sept. her platelets dropped again and we repeated the BM biopsy.This one showed myelodysplastic syndrome, but not quite AML. Wecontinued our wait and watch. Last week had a cold and herbruising and petechiae were worse than normal. We went into get hercounts and the platelets were 21. We repeated the BM biopsy on Fri andit has come back with the dx AML. She will get her port on 12/5 andstart chemo on 12/6. I have enjoyed reading the posts here and it hasbeen comforting to see similar stories to ours. We are looking for asource of encouragement as we start down this new path, knowing thatothers have passed this way before us.