Anyone familiar with Pontine Gliomas??

I'm so sorry that I haven't responded. I've left so many messages places. My son's webpage is www.caringbridge.com/ct/cameron.

I can be reached directly through that page. I will talk to any parent that is going through this with me. The botttom line is that there is no cure. There are a few new trials out there. I keep going based on the fact that there are so many diseases that had no cure one day and curable the next. Tomorrow might be our day. My faith in God helps the most. He knows me better than anyone.

We will get through this!

Hello

My name is Tabitha and I am the mom of an angel named Samantha.(www.smtg.org) Sammy was born on Dec 31, 1996 with big blue eyes and a great smile. We were told the terrible news about her tumor on Dec 2, 2004. While in Texas Samantha went to heaven on July 2, 2005. She fought the tumor with all she could plus some and every day she smiled and never complained. Kids are not affraid of anything. Sam is my hero and there is nothing that I cannot do now. I will continue to try to be in contact with families with DPG. Please let me know how your child is doing please?

God bless all,
Tabitha

Hi My heart and prayers go out to you and your grandchild. My daughter went to heaven on JULY 2,2005. She was amazing through the whole sickness. She never really knew what she had, because we felt that at 7years she probably would not understand and no child should have to worry about life an dealth. I would love to her from you or the mom.
God bless
Tabitha(www.smtg.org)daughter web site

Could you tell me who your nutritionist is in Utah that specializes in DPG? My 5 yr. old grandson was just diagnosed, and we are researching all possible options. Thank you so much...and our very best wishes to your son, for his full recovery.
Mary W.

Hi, sorry it took time to reply, the nutritionists name is Jeanne, www.nutritional-solutions.net. I have found her to be a very kind person who does not claim to be able to cure this (as many alternative treatments do) but to keep my son as healthy as possible through this and hopefully buy him more time, she also provides a list of alternative treatments that she has had experience of which I found very interesting. One of the reasons I like her is that she is so much more knowledgable on the fringe treatments available and what she doesn't know she'll find out. She specialises in these kind of tumors which also includes glyoblastomas so she is not that specific as to just do DPGs in fact not many of her clients do have DPGs (but there again there's not too many out there anyway).

My son, Max is currently doing well, still taking the Zarnestra which is making him throw up most mornings but he improves as the day goes on. He finished his radiation 3 months ago and his tumor has shrunk by 6mm (another 2.4 cm to go), still has double vision. He started school 2 days ago, I just make sure he has a seat by the door and a barf bag!

Today life is good.

I am so sorry to hear about your granddaughter. I pray for each child I hear about, and the family. This is a very difficult thing to face and watch.
My niece was diagnosed with a pontine glioma June 7th of 2005. She has completed the radiation and is now resumed the chemo which is Temador. Her tumor shrunk 1/3 of the size and they say should show more shrinkage with the next MRI. Her symptoms have improved right much for a period of time. Now she is experiencing double vision again. They say it is because of them reducing the steroids too soon. I don't know and it worries me alot. They had to put her back on a dose of 3 mg. of steroids. I hope that is all it is.
I hope things will be alright with your granddaughter. I hope the MRI will show no growth of the tumor. My prayers are with your family and your precious granddaughter.
Sincerely!!!!

My niece has a pontine glioma. She has finished radiation and is on her second round of chemo. The chemo is Temador. They reduced her steroids to 1.5 milligrams. They had to up this again because she was experiencing the double vision again and her walking was off again due to the double vision. I would like to ask you a question if I may. Will the reduction of the steroid cause double vision, or is that strictly related to the tumor growing. She is so swollen in her face. Can alot of fluid cause the double vision.
What has your son been through and when you say he is doing really good can you give me details if you don't mind.I hope I am not asking too much of you. I want to see how much he improved to see if my niece really experienced a good amount of improvement.
Thank you so much,
Tammie
I truly do hope your son will continue to improve.

How long did it take your son after radiation to start getting better? I'm very glad for you that he is getting better. My prayers are with you.

My son Cody was visiting his grandmother in Bethal Alaska when he started to drool a lot and then he has trouble with his food. On the 25th of Sept his Grandmother took him to the ER in Bethal AK they run test on him and told his grandmother that they were going to have to fly him out to Anchorage AK. So he gets to Anchorage and they did a CAT scan and a MRI. thats when they found it.. They diagnosed Cody with Pontine Glioma on Sept 25th 05. I flew up there right away.. I was shocked my 7 year old son could not walk, talk, eat, swallow, move his right side. His eyes are crossed.. I stayed there with him for two days then they flew us both back to Tucson Arizona we're they are telling us to get ready for the worst :( They are doing Radation & a Kemo pill.. I DON'T want him on Kemo but they told me this would not make him sick and lose his hair.. I would really like to talk to anyone who is or has gone through this.. jjgilbert05@msn.com
Jessica

Here is some pictures of my baby boy
This one was taken Yesterday after they removed the ventlator (sp?)
http://img.photobucket.com/albums/v424/JJJGilbert/kiddos%20p



http://img.photobucket.com/albums/v424/JJJGilbert/kiddos%20p




http://img.photobucket.com/albums/v424/JJJGilbert/kiddos%20p

I am so sorry that your family is going through this. I really think you should look into Ruta 6c and calcium phosfate. My Nephew is on this and is doing very well. I've posted here before to get the word out on it.

Look over posts for the last few months.

God Bless