Daughter with Axonal GBS and Leukemia

In a very strange turn of events that led me to “Dell’s Mom”, I finally found this site.
My daughter was diagnosed with A.L.L. leukemia at 4 in June 2006. It was a low risk type that involved chemo for 2 years…she was only a month into treatments and she developed a kidney infection, and stone.
This is where the GBS came in, for two weeks…we did know if it was the chemo or what, the doctors were in a complete state of “what is going on” and finally did a spinal tap/MRI which was part of her protocol. Protein was found and that is what clued them to this diagnosis. IVIG’s were done then and a ICU stay for 10 days of plasma exchange. Her arms were affected and below (no breathing or above)…
Fast forward to now, we had to be very careful how to treat…as the Cancer is our main priority (not that we want the GBS to be “back burner” but you have to understand) and she is still moving sooooooooooooooooooo slowly back. We do intense therapy and she has always had the feelings everywhere. Her arm strength is back, trunk and hips, too. Some hamstrings are where we are seeing progress. She can now crawl, but still not standing or walking. We just had her have another EMG/CN tests and they were better than the one from September 2006.
The one thing that is hard is she is so tight/contracted, we have her in a stander now alot of the day.
She is AMAZING and we treat this as “it may not come back”, but “lets pray it does” and have her in all activities and school.
Her story continues and I am thrilled to have a GBS site to read and get feedback on. Thanks Lori

Natalie and Abby
[url]www.caringbridge.org/visit/abbybauleke[/url]