Astroblastoma

Six weeks ago my 4 year old daughter had surgery to remove a brain tumor. We have finally received the diagnosis of (Anaplastic) Astroblastoma. Since this is a rare brain tumor we are having trouble finding information about it. And what little we do find, it hasn't been very positive. I was wondering if anyone else has any information on this type of tumor that could help us.

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Hello princessisabelle.
My name is Amber Masso, and I am the National Program Director of ACCO.

I shared your question on our Facebook page, so you will hopefully be able to connect with someone who is going through something similar. In the meantime, we would love to be able to provide some of our free materials to help your family during this difficult time. If you have not already done so, please visit http://www.acco.org to join ACCO (free) and access an order form for free books for your family.

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Good morning. I'm so sorry to hear about your daughter. How old is she? My daughter had an Anaplastic Astrocytoma. Astrocytoma and astroblastoma are relatively similar, and I've heard astroblastoma described as a tumor that shares similar histological characteristics with both an astrocytoma and an ependymoma. I've found a few links online, but sometimes it can be so overwhelming to read all about the statistics and the medical details. Have you joined any support groups?

When my daughter Jessica was first diagnosed, we felt utterly alone; like she was the only kid on the planet with a brain tumor. We were uneducated about cancer, in general; and even less so about pediatric brain tumors.

One place that literally saved my sanity was the PBT group on Yahoo: http://health.groups.yahoo.com/group/Pediatricbraintumors/

This is a group of families that truly "get it". There are families in all stages and forms of the journey. Some are the parents of angels, but most are parents of kids still fighting. There are folks there whose kids are years out from treatment and also families of kids currently in treatment; as well as those whose treatment hasn't even started yet. There are also parents of ALL ages of "kids" ... from 2 months old to 25 years and up.

There's a sign-up process, but they're typically pretty quick about getting families signed up.

I feel the second most important thing to share is that being seen by doctors who know kids, know cancer, and know brain tumors is of UTMOST importance. Even if you cannot actually physically travel to see some of these top docs (see list of links below), most will review medical records (scans, pathology, etc.) and will give their opinions; usually quite quickly.

Here are a few more helpful links:

This is a list of all the members of the Pediatric Brain Tumor Consortium. These are all great contacts for 2nd, 3rd, etc. opinions: http://pbtc.org/public/inst_contact_info.htm ... They're all mostly pretty great about personally returning emails, as well. Very responsive.

http://www.pbtfus.org/families/support/Medical-Questions.pdf ... this is a great list of questions the family should ask the medical team.

I wish you all the best, and will keep you and your family in my thoughts and prayers.

~Heide

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Thank you Heide, I appreciate the websites. I will definitely be checking them out! With this being a rare tumor, we feel like we're all alone also. The doctors do not know enough about it and so they want to follow the protocol for 'high grade tumors' in general. My daughter just turn 5 last week and is doing fabulous. She had surgery to remove the tumor back in January and has healed perfectly. Now the that the doctors have confirmed it to be Anaplastic, they want to start Chemo. Its so hard to have to put her through that when she seems just fine. We have a long road ahead of us, thank you again for the sites and continued prayers.

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Thank you Amber, I appreciate all the help!

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