Quote:
Originally Posted by Wendy Beltrami
Hi again Julia,
I responded to the other thread but I would like to say that Grant's onset of puberty has been very slow and late compared to most of his peers and especially his brother. It is happening, but slowly. It did not improve his AA, however we are trying male androgen therapy now (Danazol) hoping for some improvement.
Grant was diagnosed 12/4/98 at the age of 7 and since that time, he has had a fairly normal life. Lots of blood draws, and no contact sports but he has just developed other interests.
I would be REALLY REALLY happy with 30K platelets. We would kill for that right now. It has only been this past year since he has been transfusion dependent that it is starting to cramp his style a bit.
Grant's platelets were around 30 and we started getting antsy and wanted to try something new. MMF was what we chose (mycophenolate) and it was disasterous and dropped his red cells drastically and did nothing for platelets. It was the beginning of a serious decline and he has been transfusion dependent ever since!
Wendy
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I know I should be happy with high 20's low thirtys,but I can't be all the time.That would be throwing in the towel.I am frustrated with the lack of cures or treatments.I am frustrated with the system.I can't be thirlled that my son drags his body out of school cause he's exhausted,that the house is covered with bloody tissues,that he has no want to eat cause his mouth taste like blood and cyclosporine.That he has blinding headaches from low hmg. and throws up blood.I can't be thrilled that he pick's up every germ cause his immune system is flawed and he misses school or his count's drop even more .
I am thrilled I have my son but I will not except that this is the best medical science can do.
Thank you for the posting and best of health for everyone battling marrow failure.
Julia