Anyone familiar with Pontine Gliomas??

I am so sorry to all the children and parents of these children that have been diagnosed with this tumor. I want you all to know, there is no cure and do not let your doctors tell you there is because there is NO CURE!!!! This tumor is very aggressive and cruel.
My advice to you is to love your children and give them hugs and kisses before this tumor takes over there entire body. Tell them you love them everyday. Spend all your time with them. Take them places to where they can enjoy what time they have left here on this earth.
Because of this tumor being so rare a lot of reseach is not being done and this tumor will continue to take children until there is a cure. Get friends, family, anyone involved to raise money to find a cure for this tumor so that no more children or parents will have to continue to go through this. MAKE PEOPLE AWARE of this beast!!!!!!!
My thoughts and prayers go out to you all!!!!

Why would you tell in detail what your daughter went through. That is something you would do in private to these parents. Supposing one of the children would go on line and read your comment. How afraid that would make them.

Thank you Teresa for letting me know what to expect. Maria is not my daughter though, she is my niece. But I really do appreciate you letting me know what to expect in the future. It is so hard to see my brother and his family go through this and the information we get from others will help us to understand what is happening.

I appreciate anyone that can help explain what happens along this terrible path so that we can cope with it and understand it better.

Thanks again Teresa for sharing your child's story and for your thoughts and prayers for our little Maria.

Eileen

Teresa - also just so you know, we have already been in touch with Make-A-Wish and they are going to be taking Maria to Disney World very soon.

I hear your advice on the treatments, but we just have to try. We aren't doing the type of treatment that takes hours a day or has hair loss, and we are really focusing on the quality of life of Maria. Hopefully we are doing the right thing to give Maria the best quality of life and to allow Maria to be with us for the longest possible time. Only God knows the plan.

Thanks again for the information.
Eileen

Hi everyone,
I am Kayla's mom. Kayla was dx 08/23/05 with dipg and is currently symptom free. Our website is www.caringbridge.org/visit/kaylalucius if anyone would like to see our story. We have a MRI next Thursday, April 27 and would welcome prayers. For those of you that don't know any, there are survivors of this tumor. Not many, but there are some. I can give you websites if you want, e-mail me from the link on our website. Since biopsies are generally not possible with this tumor no one knows what exactly is in there and I think each child is dealing with something a little different. We did the radiation and chemo and God allowed Kayla to have a good response to the treatment. On our post radiation MRI we had substantial shrinkage. We decided to go with alternative approaches after the radiation and after much prayer. We have had no chemo or any drug as a matter of fact since January 10. Our Feb MRI showed a little more shrinkage. Kayla is back in kindergarten and loving it. I am praying for your children and I really just wanted to write to offer some hope. We are 8 months into this battle and all is well here.
Much Hope and Prayer,
Brenda

Hello to all,

Our hearts and prayers are with all of you. If you would, please drop me an e-mail and let me include your kids on our site for prayers. We try to keep up with as many of our children as we can. As people ask about them we pass on information or we link to your site. I get a lot of questions about the different kids and families fighting this disease. nomorewasteddays.com

Hello everyone, I am writing to offer some great hope for all pontine glioma families. Our daughter Kayla, 6, was dx on 08/23/05. We did the radiation (finished 10/27/05) and we did the Temodar until 01/10/06 when after much prayer we decided to stop the chemo. We feel that God has led us to totally alternative treatments, so this is what we are doing: Jeanne Wallace diet and supplements since Oct, Ruta/Cal Phos since Dec 1, Ambrotose since Jan, laser therapy with the Erchonia PL 5000 laser at our holistic doctor's office since the end Jan, a lot of detoxification, and just recently MGN-3, MSM, and Vitalzym. Our results have been amazing. Kayla has been symptom free since November.
MRI #1 Aug 26, 2005 (before radiation/before Temodar): 4.7 X 5.2 X 4.2 cm
MRI #2 Dec 1, 2005 (after healing service/thousands praying/5 weeks after radiation/still on Temodar/started Ruta 12/1): 3.0 X 3.0 X 2.8 cm
MRI #3 Feb 7, 2006 (5.5 months after diagnosis/2 using months Ruta/still on Temodar/began more alternative treatments mid Jan): 2.9 X 2.1 X 3.0 cm
MRI #4 Apr 27, 2006: no size listed in report, big response, tumor is fading, brain stem normal size. I posted the entire report on the 04/28/06 journal entry if you want to see it. The doctor told us to continue what we are doing and we plan to. He said the tumor is faint and he was all smiles.

We are very blessed I know and are praying for all the pontine glioma children daily.

Much Hope and Prayer,
Brenda Lucius
www.caringbridge.org/visit/kaylalucius

I agree with you. Why would you go into specific details regarding the last stages of the tumor your daughter had. Why would you take away the little dignity your child had left by telling everyone how terrible they looked or how nasty they looked? Where you able to take care of her the entire time? Seems you have a lot of guilt and your trying to justify and get sympathy by telling the world how she looked. Do get counseling and come to terms with your guilt and please dont post anymore graphic details of your childs symptoms suppose another child reads your messages, could you imagine how horrific and how scared they would feel?

To the person who "shoots from the hip": It sounds more like you have anger issues and should get them worked out. You cannot be serious that children will read this site, as it is hardly marketed or of interest to any child. Clearly this site is for adults unlike yourself, that can handle the reality of the situation they are dealing with. Since you are not telling people who you are, you are not only angry, but your are cowardly. People going through this terrible disease need to know what to expect. It is not less dignifying for the child in any way, and I am personally offended that you would try to make people feel bad about sharing their stories. We need to know and we need to share, it is the only way to get through this. Now please keep your ignorant comments to yourself. If you don't want to learn more about this tumor, then don't read this site, or any other site about this disease. Thank you for understanding.
Eileen M.

It is called having respect for a dying child or a child that has passed away from this tumor. You know nothing about this tumor and what it does and what it will do. You have no clue what you and your family is about to go through and once you do, lets here you go into details of what happened and what this tumor is doing and how much crap that little girl had to go through before the tumor took her life. YOU KNOW NOTHING!!!!!!!!!!! You have only just begun.
Have respect and what kind of person are you any way that would want details of a dying child and what she went through before she died broad casted for every one to read. You are the one that has the problem not the person that signed in as Shoot from the hip. You and her mother have got issues that need to be worked on. Think about the child and children before you think of yourselves.