I'm happy to hear her scan had a positive note, my thoughts and prayers are with you and your whole family.
Just to reply to your (justly) frustrated question about children's cancer drugs: I study Medical Ethics, and one of the paradoxes in research with children is that researchers and governmental agencies are so concerned about not harming children and about not exploiting their participation, that consequently it is very difficult to do research on children as there are so many regulations for it. The ironic result is that there has been comparatively little progress made in children's medicine. You are right - it is totally ridiculous, and needs to change - our children need progress! I am so happy to hear that the "off-label" use of the adult drug appears to be working for your daughter and I hope that research will progress such that any future medical needs will be taken care of with drugs made especially for tots.
Haven't been on this forum in a while, but Mama, I do know your pain - my DD was diagnosed with an aggressive form of brain cancer (atypical teratoid rhabdoid tumor) at age 6 months. I know the hell your whole family is in right now, and I know that, by now, you're probably getting more used to your "new normal" routine of chemo days, low counts, transfusions, neutropenic fevers, antibiotics, etc. etc. Cancer sucks and cancer treatment sucks. Being among so many sick and suffering little kiddos is very hard. Hopefully you are finding support from other cancer parents.
Sending BIG love and prayers and well-wishes to you all. Even though you might get used to the new routines of cancer treatment, I know that you will NEVER get used to the feeling of fearing for your child's life.
My DD had surgery, chemo, radiation. She is almost 4 years out from the end of treatment. She survived. There are kiddos who survive these aggressive brain cancers - and I don't see any reason why your DD can't be one of them!
Feel free to PM me if you have questions or want to chat.
Melanie- Mama to my super hero daughter bravely battling brain cancer.
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and expecting 1/13!!!!
Also, yahoogroups has a listserve called "pediatric brain tumors" that is very active and chock full of information and advice from parents who have been there/done that, from first diagnosis to treatment to after treatment/dealing with late effects.
And I found the community of parents on the forums at cbtrf.org (children's brain tumor research foundation) to be helpful - most especially the compilation of other kids' websites with the same type of cancer, so I could read about the varied journeys (well, reading about other kids was both helpful and also at times terrifying, so moderation is good!). I'm not sure if there's a lot of activity or compiled websites for pediatric GBM...
Really awesome news to get good scans! GBM and ATRT are the WORST, so I'm always thrilled when they respond to treatment. Fingers, toes, everything crossed that it goes away and stays away FOREVER.
Was reading Maddie's story and am so glad to hear her scan came out well. She is such a brave little girl - will be keeping her in my prayers. Thanks for reminding us of what's really important in life - I am resolving to be nicer to my little girl and not yell "naughty" at her so much when she is throwing something on the floor or mildly terrorizing our dogs.
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