Does Anyone Have Experience with Optic Glioma or Neurofibromatosis???

Hi E.,
I'm a cancer nurse with 20+ years experience. Cancer is a very scary word until you understand that cancer is our own body cells but the part that tells them when and what to do is broken. Kind of like a computer with a virus. These cells can grow and divide quickly or slowly depending on what kind they are. Gliomas usually occur in the brain but can occur in other places. They don't spread but rather grow (albeit very very very slowly). Their growth in a confined space such as the brain is what makes them dangerous. It is highly unlikely this would be the case in an eye; however, if you are still unsure take your baby to another oncology specialtist for a second opinion. It is you who will worry until you have someone you feel comfortable with. Don't let someone dismiss you as being over anxious, etc... It's your child- a gift given to you to love and protect. But if you can trust me- I promise as a mother and grandmother I don't think you have any reason to be afraid. I think your child will grow up happy and heathy. Watch the vision and if there is any pain have it relooked at. Good luck! You're doing a great job! Sincerely, Cyndi (K. is my incredible daughter-in-law who sent this to me)

I don't have any experience with that particular tumor, but my 11 mos. old daughter was diagnosed with a midline, thalamic tumor in January of this year. In that regard, I completely understand what you are going through! Is your child's tumor operable? Did they already biopsy it? My daughter's is inoperable, due to location, and she has become symptomatic of it lately. I am here if you need to talk. Email address: ____@____.com name is J.

E., we have two children with NF, they are both adults now and doing quite well. Has anyone else in your extended family or your parenting partner's been dx with NF? Have you seen a specialist? There is a blood test that can definitely tell what kind of NF your child has (yes, there are different kinds). I believe there is an NF specialist at OU Med Center in OKC. Get a referral if you haven't already. There is a National Foundation that can provide addtional information as well as information regarding the latest research, medications and treatments and help you work your way through the dx if that is definitive.

Hang in there and know that you're not alone! Feel free to contact me if you just need to talk.

Hi E.,

I am D. and the current president of the Louisiana Chapter of the Children's Tumor Foundation/Researching for a Cure for Neurofibromatosis. I understand how you feel and want to encourage you not be too afraid as there is hope. You received a diagnosis early and that is good. You can go to National's website at www.ctf.org and checkout all of the latest information on NF. I don't know where your physician is located; but, there is a clinic that is "approved" by the Foundation in Oklahoma. The link is on the CTF website as well.

Clinic Name:
University of Oklahoma Children’s Physicians
Affiliated Hospital:
University of Oklahoma Medical Center
Affiliated University or Institution:
University of Oklahoma Health Sciences Center
Clinic Address:
OU Children’s Physicians Building
Room 2B 2418
940 NE 13th Street
Oklahoma City, OK 73104
Clinic Director:
John Mulvihill, MD

I know that it is frustrating and scary to be diagnosed. In my family, my husband and two adult children have NF-1. However, we've not had any Optic Gliomas (several Chapter members have had Gliomas). The cancer risk is only 5% more for an NF patient over anyone else so it is not that much greater. Most are benign. The quality of life for your child can be great but you will need to educate yourself and anyone around you about NF and be supportive. Also, in the future, since we don't, at the present time, have a support group and/or chapter in Oklahoma, think about linking with the the doctor at the University of Oklahoma and start a chapter. That's what I did in Louisiana. It provides someone somewhere to turn when the diagnosis is made.

My kindest wishes to you and I hope that you will check out the Foundation's website at www.ctf.org

Have a good day!

There is a wounderful web site with info about neurofibromatosis.com (I think). I would just GOOGLE it. I have 4 cousins with this disease. There were 7 children in the family with 4 developing the disease. My aunt was the carrier. My oldest cousin had a daughter with the optic glioma. She lost her eye but they put a glass eye in & she is doing well. I am not saying that your child will lose her eye. My cousin's child lost her eye almost @ birth. I don't want to scare you but of the 4 children with this disease 2 have died with cancer which this disease CAN develop but not always. There is a wounderful support group with loads of info on this disease. My other cousins with the disease lead normal lives. My cousin with the daugter is a nurse & the other cousin manages a well know restaurant in my home town. Just talk to yor MD & look for this web site. Good Luck & God Bless You! RLD

E.,
Let me tell you, I can help you with this situation. My daughter was diagnosed with neurofibroma when she was 11 months old. It is genetic.
She has optic glioma too and we are currently seeking treatment. She has some vision blurring also but we just recently got her glasses.
She has done fine with the optic glioma.
They are begnin and doctors have never seen these tumors to become cancerous.
Your daughter will be fine and I can tell you from experience.
If you need some one to talk to please dont hesitate to contact me.
If you want to meet I would be glad to give you somemore insight on neurofibroma.
God Bless!