[Coleus]

Thanks for your insight, how is your granddaughter doing now?

[hocndoc]

Roni is completely better. She had a rough three weeks or so immediately after the transplant, and was at the Ronald McDonald house in Fort Worth for 3 months so that she could be close to Cooks Children's Hospital. But, she was able to go to daycare about a year ago, and we got her Portacath removed last November (she'd had it since she was about 6 months old.)

She's cured, as far as we know. There is very little risk of a rejection with umbilical cord cells, and she's past the time when it should have happened. She will have to have blood work every 6 months or so, as much for the rest of us to feel safe as anything. And, she may never know exactly why she was born that way. Evidently, she doesn't fit any pattern for genetic causes.

[hocndoc]

Sorry for the slow answer (been a hectic few weeks).
Roni is 2 years out from her transplant and doing fantastically well - as close to cured and a normal kid as she can be. Except for her hair.

She got her hair back after the chemo and it was finally getting to just above shoulder length. But last week, she found the scissors and cut a hunk out above her left ear. The only way to fix it was to cut her hair less than an inch all over!

I keep reassuring my daughter in law that it won't hurt her to be a generic kid for a while, but we've all been buying her hats and tieing ribbons around her head. And her Gramma keeps explaining to complete strangers - over and over.