A year ago today, Maggie had her last chemo! She'll have scans next month just to make sure that her lymphoma is still in remission, but I'm not worried at all - her bloodwork is great, she's feeling great and she looks great!
She still has nerve damage from the vincristine and at this point, her deep tendon reflexes may never come back and she will probably have to deal with some neuro-muscular issues permanently, but she has come so far from where she was, and she is healthy!
Today I picked her up from softball and she was all excited. She told me about her batting, about her race to first base when she "went for it" and beat the first baseman, despite her trouble running now. She told me about her perfect bunt, and about her awesome slide at home plate.
She grabbed the snack from the car, and ran off to her volunteer job, assistant coaching for the middle school rec league.
A year ago, she was home, sick, in pain, 30 pounds heavier from the steroids. I was scared and anxious that her alcl would return once the chemo was stopped. But we made it a year. And we're looking at colleges and planning her future.
I'm sending out hugs to all the parents here who have children still going through treatment, and praying that every family here gets to celebrate this anniversary one day soon.
Thanks! Angela, I know! In so many ways, this year went by so fast - so much faster than while she was on treatment.
We have to get her through the next 6 months - 18 months seems to be when the relapse rate for her lymphoma drops significantly. But I'm thrilled that we're at a year.
Congratulations!!! Quick question - how did you know about the vincristine causing nerve damage? My daughter with ALL is pretty early in treatment but had cramps in her calf muscle and her knee's seem to buckle around vincristine treatments...just wondering how you figured it out congrats again -- b
Thanks! We celebrated today and went shopping!
abslater, we were told upfront that she'd probably have some nerve damage from the vincristine. She lost her deep tendon reflexes almost right away (no jump when you tap her knee, etc.) She started getting neuropathy fairly early too - lots of pain in her hands and feet and numbness. She started with the knees buckling within a few months, her voice was shaky, foot drop etc... Maggie's protocol had her receiving a hefty dose of it over a year.
As I understand it, the younger kids seem to recover nerves more easily, because they are still growing.
I know that there is some controversy about glutamine, but everything that I've read says that giving it before (and during tx) with vincristine and help to prevent some of the demylenation and nerve damage from the vincristine. We didn't know about it for vcr until she was well into treatment. She still has numbness up her legs, foot drop, etc. But she compensates pretty well in most things.
I've read that nerves can regenerate and vincristine damage has reversed up to 40 months post-treatment, so we still have hope that some of this will improve a bit.
Congratulations to Maggie! Bob has some issues with the Vincristine too and will have been in treatment for year in July. That worries me. Do you think your daughter would have benefited from Physical Therapy and Gabbipentin? That's what our doctor prescribed. Bob says it doesn't work and has slacked off on PT. Thanks and so happy for you guys! :-)
bobsmama, Maggie did have 7 months of PT. It helped with regaining muscle and some other things, but I can't say that it did anything for the nerve damage. She has been on amitriptyline and neurontin(gabapentin) for over a year. They helped with pain, but from what I've read, they don't seem to prevent (or repair) the nerve damage. Glutamine and nicotine seem to help, if given during treatment, and possibly after. But there are issues with glutamine while on tx that haven't fully been vetted, and I'm not going to give my a cigarette (or a patch) at this point! lol.
In the grand scheme of things, I'm so thankful that these drugs were there. Vincristine saved her life, so if that's what we've got, then we'll deal with it.