Re: Group Tina needs our help-6 1/2 yr daughter dx with brain can...

[Guest guest]

Hi Rob and Tina

So sorry to hear about your little sweetheart. I know you must be scared.

We will be praying for her. Have you thought about St. Jude's in

Tennessee. They seem to be the most successful in treating any type of

cancerous

tumors. You might give them a call.

I hope the best for you

and Ebonie 8 with ds

In a message dated 3/28/2010 9:45:39 P.M. Mountain Daylight Time,

cynthiamiltonburns@... writes:

Group I have someone who needs help and her name is Tina. She has a 6 1/2

yr old daughter with Down syndrome that has been diagnosed with

has malignant non germinoma (or mixed) cell brain tumors. Please read her

story and see if you can help her.You can email her directly. Cyndi

- On Sun, 3/28/10, Tina Ashamalla <tashamallahotmail (DOT) com> wrote:

From: Tina Ashamalla <tashamallahotmail (DOT) com>

Subject: RE: Brain Tumor

To: cynthiamiltonburns@ yahoo.com

Date: Sunday, March 28, 2010, 11:23 PM

Hi Cyndi -

Thank you so much for your email. Several people have now mentioned the

Gamma Knife and we are looking into it. Our neuro-oncologist at Stanford said

he doesn't recommend it because there are several tumors but that doesn't

mean he is right so we're trying to get as many opinions as possible. I

would love if you could post this on your local site for us. Thank you so much

for the help.

Here's the letter we've been sending out -

This is Alessandra. She 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.

3. Would the gamma knife work considering she has tumors in two areas of

the brain? Would it be a better alternative to radiation therapy?

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.

Thanks,

Rob and Tina

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