Brain Tumor Survivors
In 2006, CNI celebrated with its
Third Annual Long Term Survivor's Party. Invitations were
extended to over 50 survivors of high-grade brain
and spinal tumors who are three years or more out from diagnosis,
all treated by CNI. Party attendees ranged from 3 to 16 years of
survival. Read the news story.
We are pleased to introduce you to a few of our high-grade
brain tumor survivors:
 Charlie Wolf
On June 3, 2002, I arrived at work at 7:00 a.m. and got a cup
of coffee and waited for my assistant. It didn't take long for
her to arrive. I asked her to come over to my office to talk about
a training class that I taught over the weekend. As we began to
discuss it, she started laughing at me since I was talking gibberish.
I tried to say something again and again but all that came out
was gibberish. I could understand her, but she could not understand
me. I called my wife, but I still didn't know how I was able to
call her. I was in a building just across the parking lot from
hers. By the time she got there, I was having tunnel vision. She
took me to our car and headed to the hospital, about 15 minutes
from work. I had to work hard to keep conscious on the way and
then I had a grand mal seizure as soon as I was in the Emergency
Room.
They told me I had a brain tumor. At the time I really didn't
understand what that meant, but the doctors decided they wanted
to do a biopsy. After the biopsy results were in, we went to Dr.
Arenson's office and he explained that I had a glioblastoma multiforme
Grade IV—the most aggressive type of brain tumor. The statistics
only gave me six months to live. They also said that only 1-2%
of people with the disease would survive one year. One the way
home we came up with our motto, "Damn the statistics, I have a
life to live." We were going to fight the disease as long as we
could. It was kind of like the Rocky movies. I had a few
wins and a few losses, but I was going to keep fighting as long
as I was still here.
It was my family and friends who gave me the reason to fight.
They give me the strength to keep pushing. They helped me get back
up after being knocked down. I have had an awake craniotomy, a
second craniotomy, chemo, radiation, a bone marrow transplant,
multiple sinus infections, 35 blood transfusions, and a gamma knife
surgery following the return of my brain tumor. I have questioned
myself many times as to why I go through pain, chemo and other
things, but there are reasons to continue to fight. I am a four-and-a-half
year survivor and have seen my grandson born and have seen him
play soccer as a 3-year old. I have seen my 9-year old granddaughter
figure skating. I have seen my youngest graduate from high school,
now a senior at the Colorado School of Mines, and my other two
daughters graduate from the University of Colorado. This is the
reason you all want to fight as long as you can.
Charlie has written two books about his brain tumor journey. Visit
his author website.
 Beth
Sherman
When she was first diagnosed in 2000 with a very
aggressive brain tumor, she was told to put her affairs in order
- she had three months to live. Beth and her husband, Bill,
were in shock. Beth had been experiencing bad headaches, but
nothing could have prepared them for this.
Beth came across the CNI web site while searching
for information about brain tumors. She read about survivor,
Cynthia Kuntz (see the story below about Cynthia) and it gave her
new hope. "I decided that I wanted my story on the CNI web
page too," she said. "That was my dream." Later when
she met Cynthia, spoke to her, and touched her, it allowed Beth
to believe that survival was actually possible. Bill started
believing too. "No matter what the odds are," he said, "somebody
wins the lottery. Why not you?"
During the next 12 months, Beth had three surgeries,
radiation, several chemotherapy "cocktails", and photodynamic therapy
(PDT). In April 2002, Beth won the lottery. Dr. Ed Arenson,
Medical Director of the CNI Center for Brain & Spinal Tumors,
looked at her latest MRI. "This is as close to a miracle as
I have ever seen," he told her.
It is now three years from her diagnosis and
Beth says things are looking pretty good. She is humbled by
the support of so many others and is grateful to everyone on the
CNI Team, especially her neurosurgeon, Jeff Masciopinto. "He
was very eager to get into my head!" Beth laughs.
She wants other people to know that they can
survive, that it is not always a death sentence. "We are changed,
but we are here. You can meet us and touch us. We will
give you hope that anything is possible. We are still an exclusive
club, but our numbers are growing. And that's really good
news!"
 Cynthia
Kuntz
As an RN in the Critical Care Unit at Swedish Medical
Center, Cynthia Kuntz knew all about brain tumors. She just never
expected to get one herself. Cynthia had seen enough patients to
know the chances of survival are not good. When you tell someone
they have a brain tumor, it's like handing them a death sentence.
In November 1997, after suffering through a series
of severe headaches she thought were migraines, she decided to visit
her primary care physician. He immediately ordered a CT scan and
an MRI. She was referred to CNI and admitted to the hospital, where
she was diagnosed with a glioblastoma multiforme grade IV - an aggressive
type of brain tumor.
"I was confident I was in good hands," Cynthia
said, " because as a nurse I had worked with many of the CNI
physicians and I knew their level of expertise."
Cynthia had surgery to remove the tumor, followed
by PDT (photodynamic therapy), chemotherapy and radiation. Although
she is not yet back to work, she belongs to a health club, where
she works out regularly, and actively volunteers her time to other
brain tumor patients and their families.
" I am a brain tumor survivor," Cynthia
says proudly. "That's a pretty exclusive club. Each month that
goes by, I feel more hopeful. I am thankful to CNI for the care
I got, and their physicians were wonderful about keeping me informed.
The PDT saved my life! Now I have a chance to help other patients
focus on the positive."
"The Brain Tumor Program at CNI gives patients
with GBM a new hope and a new light on their illness. I am honored
to work with such an excellent Team to promote PDT and the rest
of the Brain Tumor Program."
This week, October 30, 1999, I am so thankful to be
able to celebrate the two year anniversary of remission from glioblastoma
multiforme Grade IV. I am forever grateful to the Lord for his healing
from this tragic diagnosis, also the whole Team at CNI for their
expertise and compassion.
Update: In October 2006, Cynthia celebrated
her 9-year anniversary tumor free!
 Kim Merlo
Kim Merlo is a survivor of a glioblastoma multiforme brain tumor.
Sarah Spencer is the daughter of Michael and Nancy Tomicich. Michael
lost his battle with brain cancer 2 years ago. What brought these
two young women together is a love of running.
Before Kim was diagnosed with her tumor in April 2001, she
was a marathon runner who had qualified for the Boston Marathon.
The dreams of running that race had to be put on hold while she
fought for her life. She won that battle, but vision and memory
deficits prevented her from continuing her love of running. In
steps Sarah Spencer.
In the Spring of 2005 Sarah had come to devote much of her time
and fund raising efforts to the CNI Center for Brain & Spinal
Tumors. In June she rode in the Elephant Rocky Cycling Festival
raising funds for brain tumor research. Recently she was asked to
head up the development committee for the program; a position she
gladly accepted. In addition Sarah is also a runner. When asked
if she'd like to help Kim get back into running, she gladly accepted
that role as well.
Kim and Sarah started running about 2 months ago, the first time
since Kim was diagnosed. Sarah tried to meet Kim once a week or
so to jog. The first outing ended after only a few hundred yards,
but soon Kim was able to do 2 miles without stopping. What an accomplishment!
On Sunday, August 28th, Sarah, her mom, Nancy, and Kim ran the
9th Annual Race for Research 5K Fun Run/Walk at Washington Park
in memory of Michelle Plachy-Rubin, a young woman who lost her fight
in 1998. Kim was able to do the entire 5K in 46 minutes. This was
the farthest Kim had run since becoming ill more than 4 years ago.
We applaud Kim's accomplishment, we cheer Sarah's dedication and
we look forward to even greater things from both these young women.
Read an article about Kim in the March/April 2006 issue of Colorado
Runner Magazine.
Scott Vickroy
 I
found the CNI Center for Brain & Spinal Tumors Team in
February 1999, nearly four months after I was first diagnosed with
a low-grade gemistocytic astrocytoma. I had already undergone one
surgery (without significant tumor resection) and standard radiation,
only to discover that my tumor had doubled in size, suggesting a
higher-grade tumor. The original doctors were reserved about my
prognosis, thought another surgery was too risky, and suggested
only standard chemotherapy.
Luckily, we found Dr. Arenson and the CNI Center for Brain &
Spinal Tumors Team. Dr. Arenson gave us hope for a cure -- not just
standard treatment to prolong life, but the optimism, experience
and passionate belief that grade II/III astrocytomas could be cured
if treated early and aggressively.
We decided to put our trust in the CNI Center for Brain & Spinal
Tumors, not only because it meant undergoing treatment in our home
town, but because CNI's aggressive treatment plan included the cutting-edge
clinical trial of photodynamic therapy (PDT). In addition, the surgical
team would include Dr. Jay Schneiders, the CNI neuropsychologist
we already knew, who would literally hold my hand and talk to me
through the awake portion of surgery to help ensure my speech, vision,
motor skills and cognitive function would remain intact. In March
1999, I underwent my second surgery -- an awake craniotomy using
3D imaging, the Wand, and photodynamic therapy. Dr. Timothy Fullagar
accomplished a 99% tumor resection without any loss of function.
During the summer of 1999, I also underwent two rounds of chemotherapy
then high-dose chemo and a stem cell rescue. Follow-up MRI's have
been very promising, showing no active tumor.
No two brain tumor patients, or brain tumors, are exactly alike
-- and so a unique treatment path must be tailored to each person.
With the CNI Center for Brain & Spinal Tumors Team, I have been
treated respectfully as an individual. At each step, the doctors
have supported my decisions and my decision-making process.
Update: In 2006, Scott celebrated his 8th anniversary
tumor free.
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From Our Patients
“The personnel are always friendly, very concerned about
being timely, very caring. You made a very trying experience, the
best it could be.”
“...it's clear to me why Dr. Elliot and Arenson are regarded
as two of the very best in their fields and we are extremely grateful
to be receiving their care.”
“I have been very satisfied with the care in
this office.”
“Everyone at the CNI clinic were very supportive of everything
that's going on in the scary times. Everyone here feels like family
and I love it. I wouldn't choose a different place to go. Dr. Arenson
and Mary are the very best. This place is great!!! Thank you!”
“Praise God and the Great Physician for guiding
me to this wonderful team of men and women of faith, expertise,
humility and, ready to be led by the Great Physician. Being a patient
here enhances and increases my faith along with an ever present
peace of mind and positive attitude. I know I will be completely
healed!!”
“We have had a wonderful experience with this office. We
feel blessed to have found this kind of care.”
“At a difficult time in our lives, the service, compassion,
understanding and willingness to help has been truly a gift. We
don't know what we would do without them.”
“CNI has raised the bar for what we expect from the medical
profession. Thank you!”
“I have been so amazingly happy with my care.
I came here after having seen another oncologist who started me
on PCV and he gave me such little hope. When I came here, Dr. Arenson
gave me the right kind of chemo for my tumor and the hope
that has helped bring me to the place I am now. I have a wonderful
outlook on life now and the hope and faith I so desperately
needed. I believe the chemo I have been receiving is much
more appropriate for my type of tumor.”
“The gratitude we feel cannot be expressed by words—only
through our hearts would I be able to express how we feel. God bless
all of you!”
“Other doctors seemed locked into “standard”
procedure and the fact that their stats say most people are going
to die in X amount of time, and then subconsciously or not they
limit every patient's survival time to those stats. Here with you
it is totally the opposite. Every patient is unique, there is no
“standard” procedure, and stats are used to look at
the severity of the tumor but not as a limitation of survivability.
Thank you for being who you are!”
“Doing great things to help lots of people, and everytime
we come in, reach for phone, have a problem, your service, input
and solutions have been beyond satisfaction. You guys are
great!” |
