Anyone familiar with Pontine Gliomas??

Hi Tina, I understand your anger. We are angery too. Like you we lost our daughter Hayley to the same hideous monster. Hayley was diagnosed on June 21,2005 we were immediately sent to MUSC in Charleston South Carolina. Hayley underwent six weeks of Radiation and Chemo Treatments. While she was doing the treatments she started to improve. But two weeks after the treatments were over she started getting worse again. Four weeks after the treaments were over she had another MRI it showed that the tumor had exploded in size and was growing rapidly. The doctors told us to go home and enjoy what time we had left it would be a matter of weeks. We were told that there were no other treatments out there don't bother looking. But as parents we could not accept that so we went home and started looking someone told us about Dr. Burzynski in Houston Texas we checked out his website and then called the Clinic they wanted to see Hayley so we went to Houston. When we got they're they wanted another MRI it showed Hayley had fluid on her brain and needed a shunt. We went to Texas Childrens Hospital when they found out that we were dealing with the Burzynski Clinic they refused to do the shunt. We then went to M.D. Anderson Cancer Center in Houston. They refused at first to do the Shunt unless we let them treat her for the tumor. When I said lets just take Hayley home Dr. Wolfe changed his mind and said they would put the shunt in and if we wanted to go back to Dr. B he would let us. But he wanted us to consider his treatment which had never been tried before and had a list of side effects and it she had those side effects they could kill her. While at MD Anderson we heard about another treatment in Germany for Nimotuzumab that had supposedly had very good results. We decided to go with it and it we sent to MD Anderson and Hayley was treated with it for six weeks. We came home Nov. 30th and we were supposed to go back to Houston for another MRI on Dec. 12th. Hayley began to have seizures two days after we got home and another MRI was done at the local Hospital it showed four new tumors spread through out her brain. We decided to take her home and let Hosbice take over. It was total up to God now. Hayley died on Christmas Eve. That morning her breathing was worse and she hadn't eaten or drunk anything in two days before. She was out of it. The Hosbice Nurse had told us her organs were shuting down. And that Hayley was waiting for us to tell her it was alright to go. At noon I picked her up and with my husband we sat down on the sofa with her. I told "Hayley I know it's hard and your tried of suffering so when your ready go with Jesus and the Angels." Hayley took two more breaths and she was gone. We miss her terrible. And we are angry at the doctors for not telling us about all the treatments out there. Radiation does not work they know it doesn't work but they do it anyway. Dr. Burzynski told us that if the Radiation does not get rid of every last cancer cell that it will cause the tumor to explode in size and will grow rapidly and will be resistant to other treatments. That is what happened to Hayley. And from what we are finding out it is happening to all these children. Dr. B discovered in the late sixties that people with cancer were missing certain enzymes and peptides that people without cancer had. So he came up with away to put these enzymes back in the body. Elon pharmacuticals tried to buy his treatment from him and he refused to sell it. So the FDA tried to prosecute him but two hundred of his patients showed up with picked signs demanding he be let go. The whole event caused a major embrassment for the FDA and they dropped the charges against him. Cancer is a one hundred billion dollar a year industry. If there was a cure for cancer that industry would have to go away and they would loose all that money. I do believe there is a cure for cancer and diabetes but the medical industry will never let us see it. They are making to much money off of it to let it go away. And if you don't believe this you need to take the blinders off. Dr. B. has been trying to get his treatment approved by the FDA for years. Have you heard of the Thomas Navarro Bill? Thomas was a little boy in 1999 with a brain tumor his parents didn't want to do radiation and chemo so they took him to DR. B. but they had to get permission from the FDA to let DR. B. treat Thomas. The FDA said no they got senators Alan Keyes and Dan Burton involved. The Navarro's made a deal with the FDA to do a few treatments of Radiation and Chemo and if it wasn't working the FDA would give them permission to go to Dr. B. The FDA agreed. Thomas was treated with Radiation and Chemo which disfigured his face and caused multiple tumors when they went back to the FDA to get permission to go to Dr. B. the FDA once again said NO! Thomas died. You can look this up on the internet. (Thomas Navarro Bill) Before we went to Texas to doctor Bruzynski's Clinic we contacted a former patient of DR. B.'s she was diagnosed with a brain stem tumor at the age of 10 she is now and adult with a daughter of her own. We also talked to the Aunt of a little girl that was treated as an infant she is now eight and doing fine. These stories can be read about on Dr. Burznski's website. Along with contact numbers. The problem is that by the time kids get to the Burznski Clinic they have already been treated with Radiation. And it's two later for his treatment to work. We have to get the information to parents before Radiation is done. They're is a story on the news right now about a 16 year old boy with Hodgeskins Disease he did Radiation and Chemo and was so sick that he could not walk. They then took him to Mexico for treatment he says he feels great but the court is trying to force him back in to being treated by radiation again. Why? They don't want americans being treated in other countries taking the money away from the doctors and hospitals here. I urge you to go to Dr. Burznski's Website and read all about him and his treatment. Oh and his treatment is NONTOXIC unlike Radiationa and Chemo!!! When we went for Radiation and Chemo the doctor's told us that Radiation and Chemo can cause NEW Tumors to grow further down the road. They also told us that of all the children they know of that have this type tumor they all died within 2 months to two years of being diagnosed. Hayley died six months and 3 days after being diagnosed. It is our passion now to help other families avoid the same fate. Why do some people get cancer and some don't??? Sincerely Wanda and Randy Hinton Cross Hill, South Carolina

I understand everything that you are saying. Ashley was diagnosed with Diffuse Pontine Glioma. We were told that these type of tumors do not grow other tumors in the brain nor do they spread through out the body. This one tumor will just continue to grow and the tumor is very aggressive. Ashley's tumor did shrink after radiation. Diffuse Pontine Glioma is a tumor that is on the inside of the brain stem growing out into the pons, which controls everything. I have read his web site, where is it stated in his web site that he has found a cure for this tumor? I did not see it. That is why I emailed his staff. If there is a cure, parents need to be made aware of this. I don't care what that doctor would have to do to get it out that he has found a cure.

One more question, you were right there at this clinic in Texas with this doctor, why did you choose to go with another treatment option instead of going with Dr.Burzynski? You were right there. I am not trying to give you a hard time. Please do not think that I am. I did find those stories of cancer survivors. I read about the 5 year old with Pontine Glioma. The tumor is still there, which means, it could take off at any time growing again.

Our mistake. We were confused and didn't know which way to go. Dr. Wolfe at MD Anderson was determined to treat Hayley and He tried hard to convince us that the girls that survived did not have the same tumor Hayley did. Because Dr. Burznyski's treatment has not been aproved throught the FDA Insurance companies do not cover it and it is very expensive but it's cheaper than what the hospitals charge. We let Dr. Wolfe talk us out of it. And we heard about the drug from Germany. Dr. Burznyski told us that the doctor's at MD Anderson would try to keep us there. And he was right. Dr. B. also told us that he knew about the new drug from Germany and that it does not work. But we went with it anyway. We are trying to meet with congressmen to pass a law that would make all doctor's and hosptials tell you about all treatments that are available not just the ones they have. We were lucky we didn't loose everything trying to treat Hayley. But some families have lost everything trying to keep their child a live. That should not happen. Don't get me wrong I was willing to give up everything I owen to keep Hayley alive.

Everything that has been used for these tumors is experiemental and not FDA approved. That is why the insurance company's will not cover it. Also the insurance's know there is no cure for this tumor and that is why they do not cover a lot of the medical bills relating to this tumor. You did all you could do for your daughter, just as we did for Ashley.

http://www.caringbridge.org/visit/ashleychristian Go to Ashley's web site, you will get my email address there. I would like to send you a copy of the email I recived from Dr.Burzynski staff.

I am sorry but I need to say this and I hope that none of you take it the wrong way. I have been keeping up with Maria's story. I am sorry that she was diagnosed with that and I feel for her family too. I am reading her story and there is constantly something being done to raise money for this family but I am not reading where any money is being donated to St. Jude's Hospital. That Hopsital is stictly ran on donations at no cost to the family. It does not cost them a dime for anything including the travel to and from the hospital or the stay. That bothers me!!!!!!!!!!!!!!!!!!!!!!!!

Hi, I have a family friend that has been diagonsed with this at the age of 20. Your message said that you have information. Could you share with us? He has not started treatment as of yet. Thanks for all of your help in advance. Best Wishes to your son and your family. Family Friend

Renee, Who are you talking too?

Anyone with information on Pontine Gliome and best course of action.