31 for 21: Help for Girl with DS & Brain Cancer

This was posted on the Einstein Syndrome listserv and I thought I would pass it along in case anyone can help this family. Feel free to pass this on to anyone you know who may be able to help them, or share on your blog.

The family's email and caringbridge page are below.

Dear All –

Last March, we sent out an email introducing you to our daughter, Alessandra Glickman, and shared our story with you. We were grateful for the overwhelming response we received which helped us research the best course of treatment for Alessandra. We are now reaching out again in the hopes to find any other children/adults with Down syndrome that have ever received radiation for any reason.

As you may recall, Alessandra is 7 years old, has Down syndrome and was diagnosed March 21, 2010 with brain cancer. To be precise, she has non germinoma germ cell tumors (NGGCT) in her pineal and supraseller regions with metastasis to her third ventricle.

At the time of our email, we were only 5 days out from her diagnosis and knew very little about her cancer. We were desperately looking for other Down syndrome families in this position and seeking advice. We sent our email to all of our contacts in our address books and asked that they forward them on to their own contacts. We received hundreds of emails within the first two weeks from all over the US as well as from around the world. The help we received from all of you, allowed us to create a contact list of some of the top pediatric neuro-oncologists in the country and email them for advice. We also learned of three other families who have children with DS and brain tumors - one of which has received radiation.

What we found was that there is no one right answer on how to treat Alessandra's cancer. The "standard of care" for germ cell tumors would include surgery if operable, 6 cycles of induction chemotherapy (etoposide, IFOS and Carboplatin) followed by radiation. We were worried about the effects of radiation on a child with Down syndrome. Of the 13 neuro-oncologists from the top hospitals in the country (CHOP, St. Judes, Dana Farber etc..) that gave us their advice, they were split down the middle whether or not a child with DS should be given radiation or not. Half said we should follow her 6 cycles of chemo with high dose chemo with a stem cell rescue but this has only a 50/50 chance of working.

In early August, Alessandra finished her 6 rounds of induction chemo at UCSF and got through it with flying colors. We then opted to go to CHLA after this for high dose chemo (thiotepa and etoposide). Alessandra is currently in the hospital today recovering from this procedure. She is doing well although it has horrible for us to see her go through it. She should be at CHLA for a total of 4 weeks give or take.

Our doctor at CHLA, Dr. Jonathan Finlay, is one of four germ cell experts in the country. We chose him because he understood our fear of the effects of radiation on a young child with intellectual disabilities and like us – wants to cure her while minimizing the destruction of her brain tissues. Children with DS can be more adversely effected both health wise and cognitively by radiation than typical children and there is little to no information for us to base our decisions on. Hopefully, we can find some with your help.

By twist of fate, a second child with DS and a germ cell tumor will also be treated at CHLA in the coming weeks and is in the exact same situation as our daughter. We have only weeks to a month maybe before we must decide the next steps for Alessandra. We don't have faith that the high dose chemo will cure a germ cell tumor on its own, but are hoping that it will allow us to treat Alessandra with a lower level of radiation (1800 gy) than first recommended (3000 gy + boosts of 2400 gy to tumor beds equally 5400 gy).

Over the last 6 months we have researched germ cell tumors like crazy. The only studies that we could find on children with down syndrome were from Japan and had limited information about radiation. For both the benefit of our daughter and this other little girl, we are interested in finding any other children/adults with DS that have ever received radiation for any reason (leukemia etc..), how much radiation did they receive and what were the results. If you know anyone that you can put us in contact with, please email me at tashamalla {at} hotmail {dot} com (remove spaces) . Our last email generated so many emails that we were slightly overwhelmed. Please keep up with Alessandra's story at http://www.caringbridge.org/visit/alessandraglickman and direct any well wishes to the guestbook. We love your support. Also, feel free to post this email up on any down syndrome list serve or anywhere else that you think might help us find the other people with DS that have undergone radiation. We can't thank everybody enough for the love and support we have received.

THANK YOU,

Tina Ashamalla & Robert Glickman