RE: Brain Tumor

[Guest guest]

Dr. Krasnewich, who is a pediatric geneticist at NIH and mother of a

girl with dev. disabilities, says that Children's National Medical Center is

renowned for its pediatric brain tumor specialists and knowledge of

developmental disabilities. One of my sons (who does not have Down syndrome)

had

two pediatric brain tumors removed there successfully. One of my sons with

Ds was treated by a nationally known neurologist at Children's for seizures

and that same neurologist monitored his older brother during

neurosurgery--a great comfort to me.

If her tumors do not respond to chemotherapy, then get in touch with NIH.

Penny Veerhoff

-----Original Message-----

From: rav234@...

To: marylandpartners

Sent: Tue, Mar 30, 2010 10:44 am

Subject: [marylandpartners] Down syndrome that has been diagnosed with has

malignant non germinoma

> > 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 <tashamalla@tashamalla@<> wrote:

> >

> > From: Tina Ashamalla <tashamalla@tashamalla@<>

> > 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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