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Jason Merkle
Dear Friends,
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.
Patty wrote:
"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.
Patty Merkle
Mother of Jason Merkle"
Original
Story
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 MRIs 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 Womens, Henry Ford Brain Tumor Center, University of
Michigan and MD Anderson. The consensus was the same from all
the doctors. Jasons 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. Jasons 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 Jasons MRIs, 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 couldnt 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. Jasons
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 MRIs 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 Gods 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.
We would be
happy to speak with anyone who may have questions. You may email
us at merkle@cablespeed.com.
or get our phone number from the Burzynski Clinic.
Jay, Patty
and Jason Merkle
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