Jason was diagnosed at the age of 13, with an inoperable, benign brain stem tumor in July of 1994. He had severe hydrocephalus and had a shunt put in the ventricle to drain the fluid off of the brain. After seeking advice from numerous doctors around the country, we were satisfied with the prognosis that these types of tumors never change. He can live 80 years with this and it will not be any problem. Jason went on with his life attending high school, playing sports, active in church and community and attending college and never had any problems. We followed with yearly MRI’s to monitor the tumor.
In July 2001 after a routine MRI, the doctors gave us devastating news. The tumor had transformed into a highly malignant, rapid growing tumor. Since we would not allow a biopsy, because it would cause some brain damage, the tumor was classified as a brain stem glioma. His local neurosurgeon gave him 2-12 months to live.
We sought opinions from several major cancer centers. John Hopkins, Brigham and Women’s, Henry Ford Brain Tumor Center, University of Michigan and MD Anderson. The consensus was the same from all the doctors. Jason’s condition was terminal. Radiation and chemotherapy were the recommended forms of treatment, both of which are non-curative. Success, by these doctors standards, with radiation and chemo is determined if the patient lives 3 months after the treatment. The side effects of radiation in the brain stem are devastating, plus there is the risk of radiation necrosis. Chemotherapy does not penetrate the blood brain barrier. It is accepted, but not effective in brain tumors. None of doctors could give us a success story. Jason’s local neurosurgeon told us if he were in our position, he would not radiate or do chemo because of the devastating side effects they create in terms of quality and length of life. Just “let him die.”
After much prayer and research, we opted to try the Burzynski Clinic, in Houston. Dr. Burzynski at least offered hope. The antineoplastin treatment is non-toxic, so there are no permanent side effects. We called the clinic, sent Jason’s MRI’s, and waited to see if they could take Jason. He was accepted immediately for an FDA Phase II Clinical Trial. In August 2001, Jason went to Houston. After the initial physical and evaluation, Jason was ready to start treatment. We all learned how to administer the antineoplastins, which are delivered in IV form through a port in the chest.
For four months the tumor continued to grow. We spent a lot of time in prayer. There were people all around the country praying for Jason and our family. Jason was beginning to have some neurological problems because of the size of the tumor. He couldn’t hear very well, his eyes were only partly open and he had a very difficult time staying awake. The FDA wanted to pull Jason out of the trial, but the doctors at the Burzynski Clinic convinced them to give Jason a little more time. Finally in December 2001, the tumor quit growing. For three months there was no change. In February the tumor started to respond. It was 20% smaller. Jason’s hearing came back, his eyes opened and he was able to stay awake all day. The tumor continued to shrink. Not rapidly, but nonetheless it was getting smaller. The side effects of the antineoplastins are minimal. Watching sodium intake, drinking lots of water and taking supplements to keep the electrolytes in balance became part of the daily routine. Once the tumor began to shrink, Jason was able to resume a fairly normal life style.
In July 2002, Jason, his dad and I were sent to South Africa for a hunting safari. Jason was able to go hunting, and shot a warthog, an impala, a kudu and a zebra. He also darted a white rhino and implanted microchips in its horns to guard against poachers. All of this was done while he was on the antineoplastins. We transported the medicine to Africa with us and continued on with the daily routine. This was a dream come true. God brought some very gracious and generous people into our lives because of this tragedy.
The MRI in August showed 40% reduction. Praise God! On December 4, 2002 the MRI showed no tumor. Jason had a PET Scan in January which showed no active cancer cells. Jason continued on the infusion treatment and the next three MRI’s showed no cancer. On April 21, 2003 we returned to the Burzynski Clinic. Jason is in remission. He went from the infusion therapy to the capsule form. He will continue with the capsules for at least 8 months. God is so good. HE is our strength for each day. It was only by God’s grace that we found Dr. Burzynski. Communities of people, churches, schools, family and friends have lifted us up in their prayers. We are very grateful for Dr. Burzynski and his staff. This treatment has given Jason back his life.
Jay, Patty and Jason Merkle
Jason Merkle's mom, Patty, joined our group about a month ago. She
recently sent us this update and I wanted to share it with you.
Thank you, Patty. These stories are such an encouragement to us.
"Jason was diagnosed 07/01 with a high grade brain stem glioma. We
looked at all the traditional treatments-3 different types of
radiation, chemo with and without radiation and we discussed the
intra-arterial platinum therapy with Dr. Neuwelt. I believe this is
now called BBBD. Our neuro-surgeon was really pushing the BBBD, but
after reading the statistics (at that time 98% of the patients did
not live through the surgery) we opted for Antineoplastons. We did
not have the support of any of our doctors.
Jason went to the Burzynski clinic in August of 2001. He was 20 at
the time and had just finished his second year of college. We spent
4 weeks there, going through the routine of learning the ropes.
Jason learned right along with us.
Jason's tumor continued to grow through November and we had
significant pressure from his doctor to discontinue the
Antineoplastons, but we persevered. It was then stable for 2 months
and after that it started to break down. December of 2002 the tumor
was completely gone.
Jason was on infusion for 20 months and capsules for 8 months.
We were very rigid with diet and exercise. Jason eliminated all
sugars, white flour, rice, simple carbs, dairy etc.
He ate basically vegetables and meat. We also sent his blood work to
a nutritionist and kept his immune system in the best possible
condition we could. He took numerous supplements. After about 6
weeks on decadron we decided the side-effects of that were terrible
and we started pulling him off. We used natural supplements to keep
the swelling down.
This sounds so "cut and dry" but believe me it isn't. We have been
where all of you have been, and have gone through what you are going
through now. It is difficult!! It takes a lot of hard work,
perseverance, faith and prayer. Jason's story is on the Burzynski
Patient Group web site.
Jason has been "cancer free" since 12/02. He graduated from college
in May and has a full time job. He has had many opportunities to
speak and share his story. God has been very gracious to us.
I am hoping to get to "know" everyone in the group. We will be
praying for all of you as you go through the trials and tribulations
associated with cancer.
I hope our experience will be beneficial to someone.
Mother of Jason Merkle