Saturday, April 3, 2010

Please help spread the word.

I know I don't have many followers, but just in case any of you can help I'm posting this for a member of the DS community.

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

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