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CNI Center for Brain & Spinal Tumors
Patient Stories
Testimonials
Larry and Carol Chapman
It was less than five years ago that Larry and Carol Chapman first heard of Colorado Neurological Institute. Their nephew, James, and his wife, Shawna, had turned to the organization when James discovered that a brain tumor that had been in remission for more than a decade had not responded to treatment he had received the previous year in Loma Linda, California. Due to the high grade and aggressive nature of the tumor, James had few options available to slow its progress. But under the care of a specialized team led by Dr. Edward Arenson at CNI’s Center for Brain and Spinal Tumors, James was able to share a few more months with his wife and two sons before he passed away in 2005.
While devastated by the loss of their nephew, Larry and Carol felt a deep gratitude to CNI for the quality of care and support they had provided to James and Shawna throughout his illness. But they never imagined they might one day need that care for themselves. But that day came less than two short years later. In July 2007, Larry and Carol had packed up their RV to head out for a vacation to Alaska from their home in Casper, Wyoming. The trip was encouraged by their doctor, who had recently diagnosed Larry with depression following the onset of various symptoms such as recurring headaches and difficulties with speech and coherence.
Just before arriving in Tok, Alaska, however, Larry began suffering severe disorientation and confusion. He was flown to Anchorage, where the doctors diagnosed the cause: a brain tumor. “At the time I recall thinking that it just couldn’t be possible,” Carol explains. “How could the same thing that took our nephew be happening to Larry. It just didn’t seem real.” Without hesitation, Carol called Shawna’s mother to get the name of the doctors who had treated James at CNI. By 8pm that same day, Larry had been flown to CNI and within 24 hours, had undergone a biopsy and a plan for his treatment was started.
“It all happened so quickly, but the entire team at CNI let me know what was happening every step of the way”. Dr. Arenson explained that the tumor couldn’t be removed because of its location and size—that it was a serious problem,” Carol recalls. “He was very honest and straightforward with me, but still hopeful.”
In fact, Carol and Larry learned that only about 12 percent of people with Larry’s type of un-removed tumor become long-term survivors. But they were determined to be among that percentage. Over the next several months, in fact, Larry underwent 33 radiation treatments as well as chemotherapy. Throughout this exhausting and physically depleting regimen, Larry and Carol found great comfort and strength in the compassion and support of the CNI team, particularly Mary Pierick, RN, Wade Jensen, CNI Chaplin and Cynthia Kuntz, volunteer and former Hope Award winner.
“Every day Mary greeted us with a smile,” Carol recalls. “She was always upbeat and encouraging. And she always made herself available to us, even giving us her cell phone number to reach her anytime, day or night.”
Throughout his treatment, Larry did experience setbacks, including complications with blood clots and severe balance issues that ultimately required him to spend time in a rehabilitation facility. At one point, he recalls starting to give up, even declining to participate in his therapy sessions. “Carol saw what was happening and she confronted me,” he explains. “She said, ‘Either we’re gonna figure something out, or we’re done.’ It woke me up to what I was doing. And I told her, ‘Well that would be the dumbest thing I ever did if I were to give up.’ It was a turning point for me.”
Equally determined to see Larry succeed, Dr. Arenson explored every avenue of viable treatment, including an innovative use of medication that was just starting to be used for brain tumors. “He used all the tools in his toolbox,” Carol explains. “He was willing to look beyond standard protocols to find the right combination of treatments that would work for Larry.”
The innovative use of medication created a new challenge for the Chapmans, however, in terms of their insurance coverage. The off-label usage was deemed “experimental,” despite the findings and advocacy of the Wyoming Insurance Commission. Carol ultimately took the issue to the state legislature and local media, which conducted interviews with both the Chapmans and Dr. Arenson. The Chapmans were able to reverse their insurance company’s decision. Their efforts did help with the passage of new legislation protecting the rights of insured in Wyoming—so other facing similar challenges in the future can get the coverage they need.
In June 2008, during a routine MRI, Larry and Carol were given the news they’d been praying for: the tumor was gone. It was confirmed in two subsequent MRIs, after which Dr. Arenson explained that he believed Larry would be a long-term survivor. “I thought, ‘We have a future again,’” Carol recalls. “I knew that sometimes the tumors come back, but both Larry and I felt strongly that he was going to be ok. And we have Dr. Arenson, Mary and the entire team to thank for that.”
Back at home in Wyoming, the Chapmans have adapted to a new routine and pace to their lives, but still enjoy many familiar joys, like visiting friends and neighbors, taking in the beauty of the great outdoors that surround their home and keeping up with their sheltie, Ollie and corgie, Smarty Pants. With Carol’s help, Larry also continues to work toward recovery every day. Through ongoing therapy, he is learning to retrain parts of his brain that were destroyed by the tumor. And, while his progress is sometimes slow, Larry and Carol recognize that he has made tremendous improvements since the journey began. She notes that he’s also changed in certain ways, as well. As Larry admits with a smile, “I hug people a lot more than I used to.”
They also have devoted their efforts toward achieving a new goal: helping others living with neurological illness. In 2008, they provided a gift of remarkable magnitude and generosity—an endowed chair to support the mission and efforts of CNI’s Center for Brain and Spinal Tumors. Through this gift, the couple will provide perpetual funding to support the work of CNI for generations to come.
“We realized that if you don’t have a CNI, people like us in the Rocky Mountain Region would have to go far away from home to get that level and quality of care,” Carol explains. “We want everyone to have a Dr. Arenson to turn to—someone who treats the whole person.”
The generosity of the Chapman’s gift is demonstrated even further by their unprecedented decision to name the chair after Dr. Arenson and nurse Mary Pierick. Specifically, the chair is entitled The Edward B. Arenson M.D. and Mary Pierick R.N. Endowed Chair for neuro-Oncology. “We’re just normal people,” Larry explains. “Dr. Arenson, Mary and the entire team over there—they put their hearts and souls into helping patients like me every day. We wanted to show our appreciation and also help others. Life’s just too short not to do that.”
CNI would like to express our sincere gratitude and appreciation to Larry and Carol Chapman for entrusting us with the responsibility of their generous gift. We pledge to utilize it wisely to perpetually support the mission and efforts of the Brain and Spinal Tumor Center at CNI.
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John P.
“It takes a lot to impress me, and now I am impressed.”
John P., a patient of the Center for Brain & Spinal Tumors, after seeing his MRI results following treatment at the Center.
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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."
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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.
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