Wow, I've not logged on here in so long! Having two kids with cancer means not much time for momma to sit at the computer! Elle is doing pretty well. She had a gtube placed about a month ago and gets feedings overnight to supplement the little bit she takes by mouth. She is currently inpatient getting chemo and was in PICU about a month ago battling sepsis, but pulled through just fine. She has finally been put on Neurontin and that seems to help her neuropathy. She also was fitted with AFOs and is working hard in PT on her mobility. Her speech issues are also slowly but surely getting better with her speech therapy.
Bradeigh made it through in Induction and was classed low risk, placed on arm LR-M on 0932. Her hair has thinned some but she has not lost it all and her oncos said there is a big possibility that she won't ever lose all of it. She had some problems with neuropathy but not nearly as badly as little sister. She has yet to have another hospitalization beyond her initial one (well, no unplanned ones, anyway- her protocol calls for intermediate dose MTX over 24 hours and she has had admissions for those) and we hope it stays that way.
I hope you and your kids are doing well.
I always think of you and your girls because I remember reading your story and being shocked that both girls were diagnosed. My daughter Summer is on the LR-M 0932 too. She never completely lost her hair either (even though now a year into LTM, she is losing a lot all of a sudden, but has never lost it all). I am so sorry about the sepsis with your other daughter. Summer had MRSA early on in treatment and it was awful. I know anything like that is such a awful experience because the cancer is ENOUGH so it sucks to have anything else to deal with-never mind two children battling it!!!! I am glad they are both doing better now. Thanks for the update.