Anyone familiar with Pontine Gliomas??

hi my daughter was just diagnosed with this dpg you say you have alot of info please share we are completely lost and devasted, please help us

On February 15,2008 my daughter Sadie was diagnosed with pontine glioma by Texas Childrens Hospital. It was the most devastating news any parent could receive. Here they wanted to give her radiation treatments, and nothing more could be done. A week later I moved Sadie to MD Anderson Cancer Center (suppose to be the best hospital). There they wanted to give Sadie Chemo and Radiation treatments. March 5,2008 Sadie began her treatments, by Sunday Sadie began to get very tired and was sleeping a lot. I brought this the Drs attention and they told it was because of the Chemo and Radiation treatments, that she was tired. On Monday she did not recieve the chemo but did get radiation. By Tuesday when she was to be discharged she was having kidney failure. On Wednesday she began to have runny bowl movements,and vomitting and I brought that to the drs attention, they again told me it was the chemo. Wednesday she also did not recieve radiation treatment because she began to have a real bad cough with a lot of secretion in it and it was difficult to sedate her without her choking. So they canceled it. Thursday was the worse night of our lives. Sadie began to have bloody noses was coughing up blood and basically could not breath, they nurses were in and out all night and they gave her sooo many mediscines it was unreal. We were up 24 hours and all Sadie would say is "I dont wanna die." Friday morning is when all this got worse.  Sadie would try to talk to me and her voice was sooo hoarse.The drs came in and said to me that she was gonna have to be put in the icu, so they could keep a closer eye on her and because she was having a hard time breathing, and because the tumor was getting bigger and was taking over her vocal cords, and they were shutting down. So that she needed to be put on life support. Once  we got into the icu it was explained to me that the life support was a temporary thing. That they would be able to give her a tracheotomy That this was just a temporary thing so that she could get radiation. Well that was not the case. They gave her a catscan and it was determined that Sadie had something else in her brain along with the tumor. That we would not be able to find out til we got her and Mri. Which would be on monday. Monday came and we waited all day long for this MRI to determine what to do, The drs had said to us that she had fluid in her lungs her kidneys had shutdown and now her liver was also shutting down, So we basically had to make a decision on what kind of life we wanted for Sadie. We would not be able to give her a good qualtiy of life with what was going on. We did not end up getting an MRI til Monday night at 11. The MRI ppl then explained to me that they had been trying to get in touch with ICU to bring Sadie down to the unit for four hours. Tuesday morning came and the bad news came. Sadie had another condition that I cannot remember the name of but that it was reversable, but in Sadies condition it was so bad that it wasnt. Her brain looked as if someone literally took her and tried to drown her. She had a lot of water and blood in hr brain. Then they continued to tell me that "The good thing is we got her tumor to shrink in a week" "It even has a hole in it" At this point I am sooo devastated. They continued to tell me that my daughter was gone. There was nothing I could do. Brain was gone liver was gone kidneys gone lungs had fluid in them. It was just a matter of time til the potassium would rise and make her heart stop beating. They did not bring me a kidney specialist til the day Sadie passed away. Sadie passed away March 20,2008. The thing is Sadie did not die of the tumor. We dont even know what happened to her. All I can say is this is a very devastating tumor. And please please make the right choices and the procedures that yall chose to try to make them better. In my case I think I could have made a better choice. I feel as if I helped kill my child. I miss her sooo much and have fallen into a deep depression. Sadie left 5 siblings behind and they too are having a real hard time dealing with it. I pray each night for those who have this tumor. And there is not a day that doesnt go by that I do not think of Sadie. She was the star of the family (always shining bright.) Very happy and outgoing. I did make a web page for her www.caringbridge.org/visit/sadiemareesmith  Good luck to all those who get treatment for this tumor. I pray that one day we can find a cure for it.

Hello

I'm sorry for my English. I hope you can understand me. In 2005 your son was diagnosed with a diffuse pontine glioma. I wanna know how is he doing. I have a ten years old cousin. He was diagnised one month ago. I would like to receive all the information that you have. Please, help me! My family is desperate. My e-mail is

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. Thank you.

Hi my name is Libby.  My best friends 9 year old daughter has been diagnosed with Dpg one week ago.  The doctors prognonsis was really poor.  Initially told 2 weeks to live and nothing they could do.  Since then have decided to do radiation therapy.  Their best hope is to help her live for up to six months.  Your story is so inspiring and Madeleines parents are considering ruta6c to slow the growth of her tumor.  I am a midwife and about 6 months ago I read about a cell in breast milk that attacks and Kills cancer and brain tumor cells.  As well as this breast milk gives a huge boost to the immune system.  We have started madeleine on donated breast milk.  Within 2 days of starting this the terrible bruises she had on her legs as a result of falls due to the tumor began to heal.  Now one week on they are almost completely gone.  I thought you might like to consider breast milk as an adjunct to your sons current treatment.  It is like a good chemotherapy with no negative effects.  All positive.  Madeleine drinks hers in a smoothie and doesn't notice the taste of the breast milk.  Hope this helps. Good luck.  Love Libby.

Hi my name is Libby.  I am a midwife.  Did you know that human breast milk has a cell in it that attacks and kills cancer cells and brain tumor cells.  It also boosts the immune system.  My best friends 9 year old daughter was diagnosed with diffuse pontine glioma 1 week ago and we too are devestated.  We have started her on breast milk which she drinks in the form of smoothies.  2 days following starting breast milk the severe bruises she had on her legs for weeks started to heal.  1 week on and they have almost dissappeared.  I am sure the tumor is dissappearing at the same rapid rate.  I hope this gives you another option.  Google breast milk as cure for cancer and you will see evidence of this positive healthy form of "chemotherapy".  Good luck Love Libby. 

Hi my name is Libby my best friends daughter was diagnosed with diffuse pontine glioma 1 week ago.  We felt the same devestation as you feel.  Do not lose hope.  There is so much you can do.  I am a Midwife and 6 months ago I learnt about a cell in breast milk that attacks and kills cancer cells and brain tumor cells.  At that time I said to my friend "I don't know why they don't use this to treat cancers and brain tumours" sort of a healthy form of chemotherapy. As well as killing the tumors breast milk boosts the immune system of those who drink it.  As far as I know there are 20 recorded cases of adults who have been diagnosed with terminal cancers of different types who have used breast milk consumption as a treatment.  As far as I know all 20 have been cured of their cancers and tumors.  Why then don't the doctors prescribe this as a treatment?  Why don't they research it more?  The reason why is that breast milk is free.  There is no money to be made by pharmacutical companies or the medical profession.  We have started Madeleine on breast milk.  2 days following starting her on breast milk the terrible bruises on her legs started to disappear.  1 week on and they are almost gone.  This is something to consider as an adjunct to any other treatment options you have been offered.  Good luck and God Bless.  Love Libby