I have received this email a few times now and I thought I would post it here in case any of YOU can be of any help.
Alessandra is a 6 1/2 year old girl with Down syndrome. She is one of the sweetest and funniest little girls that you could ever meet. Last Monday, March 22nd, 2010, we were told that Alessandra has malignant non germinoma (or mixed) cell brain tumors. These make up only 2-3% of all pediatric brain tumors so they are quite rare. They are curable though! Although our neuro-oncologist has treated several patients with these kinds of tumors, in his 20+ years at several leading cancer centers, he has never treated a child with Down syndrome.
We are desperate to find other families, doctors, or anyone who has come across a case like this or similar so that we can know how other children with DS have responded to treatment. There are a couple variables that are unknown that we don't want to take our chances on and we know that if we look hard enough - there are other people out there who have gone through this or treated someone who has. Thank you for helping us look!
Questions we have: 1. The chemo being recommended to us is a mixture of Carboplatin, Etoposide amd G-CSF for half of her chemo cycles and Ifosfamide, Etoposide and G-CSF for the other half. Etoposide can have a side effect of leukemia. Children with DS have a 50% higher rate then typical kids of getting leukemia. Should we give her Etoposide?
2. Radiation - we are getting conflicting recommendations about giving children with DS radiation. That are prone for early onset alzheimer's disease and doctors are not sure how radiation will effect her cognitive abilities in the future. It might accelerate the on set.
Here are the facts - 2 to possibly 3 large tumors in her head 1 in the superseller region of the brain that has completely wiped out her pituitary gland and its functions, has grown into her cavernous sinuses and is compressing lightly on her optic nerve although there doesn't look to be any damage to her sight yet.
1 or 2 in her pineal region of her brain. It's either one tumor with an extension or two separate tumors. Beta HCG levels of nearly 8000 AFP levels of 10 No tumors found on the spinal MRI CSF levels of 1500
We don't need to find someone who matches exactly because there may not be anyone out there. We would love to find anyone who has had, known or treated a child with Down syndrome who had a brain tumor even if the outcome was not successful. Anything and everything we learn may help us help our daughter. Please email email@example.com .
Thanks for helping this family and spreading the word, and be sure to keep Alessandra and her family in your prayers!!