Cancer and Courage

Teen’s generous spirit lives on through brain donation

A guitar signed by U2 is now on permanent display at C.S. Mott Children's Hospital in Ann Arbor in honor of 15-year-old Laurence Carolin, who had a rare brain cancer. He donated his brain for research.

A guitar signed by U2 is now on permanent display at C.S. Mott Children’s Hospital in Ann Arbor in honor of 15-year-old Laurence Carolin, who had a rare brain cancer. He donated his brain for research. / KATHLEEN GALLIGAN/Detroit Free Press
Laurence Carolin died in 2010.

Laurence Carolin died in 2010.
Neuro-oncologist Patricia Robertson and Lisa Carolin, Laurence Carolin's mother, take in the U2-signed guitar. Carolin said her son "asked himself what he was going to do to make a difference and thought about organ donation." Laurence had hoped to meet U2, but when that wasn't possible, he asked the Make-A-Wish Foundation to donate $5,000 to the United Nations Foundation.

Neuro-oncologist Patricia Robertson and Lisa Carolin, Laurence Carolin’s mother, take in the U2-signed guitar. Carolin said her son “asked himself what he was going to do to make a difference and thought about organ donation.” Laurence had hoped to meet U2, but when that wasn’t possible, he asked the Make-A-Wish Foundation to donate $5,000 to the United Nations Foundation. / KATHLEEN GALLIGAN/Detroit Free Press

Laurence Carolin always knew he wanted to help people — whether raising money to feed the hungry or to buy mosquito nets to combat malaria in Africa.

So when the 15-year-old from Scio Township found out he was terminally ill with brain cancer, he wanted to make sure his life made a difference.

Laurence, who died in January 2010, decided to donate his brain to the University of Michigan in hopes of helping others who suffer from the rare disease.

On Wednesday, a Gibson Les Paul guitar signed by the band U2 was unveiled on the third floor of C.S. Mott Children’s Hospital in Ann Arbor to honor Laurence — the first youth to donate his or her brain to the university’s research program.

“He asked himself what he was going to do to make a difference and thought about organ donation,” said Lisa Carolin, Laurence’s mother.

When Laurence found out he couldn’t donate his organs to other patients, he asked his mom whether the university could use them for research.

“He drew up the paperwork, and we both signed it,” Carolin said. “I was really proud and excited, and I thought it was brilliant because people can make so much of a difference with their bodies.”

Laurence’s journey wasn’t easy, his mother said.

Before his diagnosis, he experienced extreme depression and had suicidal thoughts, Carolin said.

“He was always exuberant, happy and outgoing,” Carolin said. “For two weeks, he had extreme depression and physical symptoms, including balance issues.”

He learned he had a rare form of brain cancer — glioblastoma multiforme — soon after seeing doctors in December 2007, Carolin said.

The experience, she said, was bittersweet.

“He was smiling and said, ‘I know what’s wrong with me,’ ” Carolin said. “I don’t think he looked at it as a terminal diagnosis.”

Laurence began raising money to fight global poverty shortly afterward.

He hoped to meet U2 through the Make-A-Wish Foundation but found out he couldn’t.

Instead, Laurence had the foundation make a $5,000 donation to the United Nations Foundation, which works with U2’s charitable organization, One.

The nonprofit group does not accept donations directly, Carolin said.

“He could have used the money solely for his gratification,” said Dr. Hugh Garton, a pediatric neurosurgeon at Mott. “But he wanted to raise community awareness.”

Laurence donated another $30,000 as part of his own fund-raising campaign.

“He was always of that mind-set,” Carolin said about her son’s desire to help others.

The band learned about Laurence’s efforts and signed his guitar after a concert in fall 2009 at Soldier Field in Chicago. It will remain on permanent display at Mott.

In addition, Laurence’s legacy continues at Dexter High School through a student branch of the One organization.

Students create posters and sell bracelets to raise awareness for poverty, malaria and HIV and AIDS in Africa.

Each year, students from Mill Creek Middle School in Dexter, where Laurence attended, also participate in an essay contest in hopes of winning a $500 scholarship that can be used to donate to charity, for college or both.

Contest participants are asked how they would make a difference in the world, and the essay that most represents Laurence is chosen.

Besides raising money for charity, Laurence, who was adopted from South Korea, also celebrated Airplane Day — known as the day an adopted child from overseas flies home with his or her new parent.

The day is celebrated like a birthday. For the last few years, Laurence’s family and friends have used the day to raise awareness for his causes.

Next year, the event will be held Feb. 2 at the Foggy Bottom Coffee House in Dexter.

“Laurence had the most amazing sense of humor through the whole thing, when it’s so easy to get sad,” said Donna Turner, a family friend.

“He taught me that bad things can happen every day, but you can choose if can’t overcome them or if you can overcome them and make a difference.”

Contact Melanie Scott Dorse

 

http://www.freep.com/article/20121220/NEWS05/312200222/Teen-s-generous-spirit-lives-on-through-brain-donation

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The Fight Against Cancer is not the Only Battle Patients Face

Fundraiser will help father with brain cancer

Published: Wednesday, December 12, 2012 at 17:13 PM.

Steve Meyers says his son has been through a lot, and he is clearly not exaggerating.

Scott Alan Meyers was diagnosed in early 2006 with an anaplastic astrocytoma brain tumor. Meyers, now 39, is taking expensive chemotherapy medication at home as he continues fighting the brain cancer.

A benefit to help with medical expenses is planned for 5 p.m. Saturday. It will be at the old Eli Whitney Fire Department at 3917 E. Greensboro-Chapel Hill Road in southern Alamance County.

The fundraiser will include $8 dinner plates with barbecue chicken, slaw, baked beans, roll and a drink. Eat-in and take-out orders will be taken.

A silent auction will include gift baskets and gift cards to area businesses.

“I just picked up three autographed shirts signed by Roy Williams,” Steve Meyers said.

Other opportunities to help Meyers will include a bake sale, and a sale of crafts and products such as Mary Kay and Avon cosmetics. Donations to help Meyers and his family will be accepted.

Scott is married to Bridget Meyers and is the father of three sons — Tyler, 17, Brandon, 14 and Dylan, 11.

A flier advertising the event says Meyers has been through radiation, chemotherapy and other treatments.

“Due to his physical deterioration, he is no longer able to operate a motor vehicle and is no longer able to work,” the flier says. He is on disability and expects to soon lose his medical insurance.

“It’s really tough,” Steve Meyers said. “He’s had three or four major surgeries,” and cancer treatments have resulted in serious side effects.

Meyers said people who want to come earlier than 5 p.m. Saturday are welcome to do that. He expects family and friends will be there beginning about 1 p.m. Besides serving as a fundraiser, he said, the event is meant to allow people to meet Scott Meyers and his family and to enjoy holiday fellowship.

Anyone who has questions or who would like to make a donation is asked to call Steve Meyers at 336-512-7007.

 

http://www.thetimesnews.com/news/top-news/fundraiser-will-help-father-with-brain-cancer-1.63877

Catherine Ivy On the December Cover of Frontdoors Magazine

TRAGEDY TO HOPE

Tragedy has its way of reminding us that no day is ever promised.  Oftentimes it changes usforever.  For some, it becomes life’s beneficence.

Ben and Catherine Ivy, two very smart, successful financial planners, were the perfect couple. They were healthy, happy and in love.  They recognized life’s blessings and wanted to find a way to give back to others.

In August 2005, after a hiking trip, the decision became very clear when Ben sought medical care for an unexpected numb thumb.  The MRI revealed an aggressive brain tumor called glioblastoma multiforme (GBM). The doctor told him he had less than 18 months to live.

It became painfully obvious what they would spend their efforts doing.

“His quality of life was taken so fast,” Catherine recalls.

The two began forming the Ben and Catherine Ivy Foundation to fund patient focused research on gliomas. While the ultimate goal is to cure brain cancer, the immediate focus is to double the life expectancy of patients within the next seven years.

“It was kind of ironic that Ben was diagnosed with a disease of the brain because that was his gift,” she says after describing him as a “charismatic” and “extraordinarily intelligent” man.

Four months later, he was gone and Catherine was left to carry out a difficult mission and a painful loss.

Catherine began traveling around the United States to all the major hospitals and the Pacific Northwest to scope out research options.  While in Seattle, she met Neurosurgeon Gregory Foltz. The two had a common passion to fuel brain cancer research and treatment. They then formed the Ben and Catherine Ivy Brain Tumor Center at Swedish Medical Center in Seattle.

“If a person is diagnosed with a brain tumor in Seattle, they now have so many more options locally. It makes a big difference being close to home,” Catherine relates.

The purview of the privately funded Ben and Catherine Ivy Foundation supports risky, out-of-the-box research of merit. “There is a lot more to learn about this disease, but I feel like the needle is moving,” Catherine says.

The foundation’s research remains focused on areas of genetic screening as well as vaccine related studies.

Currently, the foundation works with Translational Genomics Research Institute (TGen), a nonprofit biomedical research institute in Arizona that’s working to understand the genetics of the disease as well as translating those findings into treatment options.

“I am really trying to leverage and work with TGen, while trying to involve Barrow and Mayo,” Catherine says. “There’s tremendous opportunity for the state of Arizona and for the patient.”

TGen’s project deals with personalized medicine and the study of genetic makeup to discover why two percent of patients are living longer than others.

The foundation’s goal is to find ways to get the patient to live longer in order to better understand the illness. “The brain can be complicated and can have so many more additional challenges than other organs. You can’t remove your brain to study it like you can some other organs,” she compares.

“I need measurable goals that are realistic and achievable.” she says. Science is an art and grey is very uncomfortable.”

The Ben and Catherine Ivy Foundation is now one of the largest privately funded brain cancer research foundations in the country.  The foundation works with institutions such as the University of California San Francisco, University of California Los Angeles and Stanford.

Stanford’s approach to brain tumors uses advanced imaging to flag the tumor, allowing more precise surgery.

In the meantime, the Ivy Foundation continues to seek out the finest research and scientists. Most recently, Catherine’s travels have been to Europe, to inquire if collaborative research would enhance the results for the person diagnosed with brain cancer.

While the Ivy Foundation doesn’t accept direct donations like their medical partners, Catherine acknowledges how others can help.  “I really encourage people to get involved when and if they can,” she says. “Whether it’s a walk or volunteering, it contributes.”

“Cancer affects the world, not just us. Our research is about delivering results to the patient. It’s not about them. Not me or us. We will continue our efforts no matter how long it takes to make it happen,” she says.

Connect To:

The Ben and Catherine Ivy Foundation

6710 North Scottsdale Road Suite 235

Scottsdale, AZ 85253

Phone: 480.659.9621 | Fax: 480.659.9651

http://www.ivyfoundation.org/