Childhood Cancer Awareness Month

How far can you run? Could you run a 10k or half marathon or do you only consider taking flight if someone is chasing you? About 0.17% of Americans run marathons in a year and 96% of Americans think they are crazy. What does that say about a man who is running a 100-mile trail race?

His name is John French and he’s been running for a while. In fact, he’s completed a few ultra-marathons, but never anything this long. On November 7 and 8, John will be running the Pinhoti 100, which is a point-to-point endurance run in eastern Alabama. While the length of the run seems preposterous enough, it also isn’t flat. In fact, the course has an elevation gain of more than 16,000 feet including a climb of 1575 feet from miles 35 to 41!

You might think that John’s lost his mind, but there is a special reason he entered the race.

John started dating a young lady named Kathy Sasser in February of 2014. Later that same year, his mother in Scotland was diagnosed with breast cancer and Kathy’s son, Hayden was diagnosed with a brain tumor. Together they navigated supporting their families on two continents.

“For months during the beginning of our relationship we were oceans apart,” recalled Kathy. “A lot of our dates entailed him picking me up at the front door of Children’s Healthcare of Atlanta and running out for a quick dinner while a nurse stayed with Hayden.”

Hayden was in the 7^th grade when he began to have trouble using his right hand and arm. A scan at the emergency room found a softball-size tumor pressing against his brain. While the size and location were troublesome, he began the fight with a very optimistic attitude. Over the next two years, Hayden endured 3 surgeries, 33 rounds of radiation, and 6 months of weekly chemo. Through it all, Hayden kept his wicked sense of humor. He hosted pizza and Xbox parties in his room at CHOA, cracked jokes with nurses, and dyed his hair blue when it grew back.

“A blue-haired kid in a wheelchair attracts a lot of attention,” Kathy said. “People came out of the woodwork to make Hayden’s life remarkable.”

But all of that wasn’t enough. The year 2016 was a very difficult one as John lost his mother in February and Hayden passed away in December. He was only 15 years old.

CURE was with Kathy and Hayden during their fight to deliver a toiletry kit when they’d forgotten a toothbrush, offer games to help with boredom, and share a much-needed meal. CURE also funds research that will lead to better treatments for kids like Hayden. So while running 100 miles is a great accomplishment, John isn’t doing it for himself.

“The race takes place November 7 – which is the day after what should have been Hayden’s 19th birthday,” John said. “When doing a race like this, there will be times when I have doubts as to the whether I can complete it or why I even signed up for this. I carry a bag of ‘whys’ with me which I dig into during moments of doubt. Hayden and Kathy are in my bag of ‘whys.’”

John and Kathy have set up a fundraiser to benefit CURE in Hayden’s memory. Please join us in cheering John on and consider joining his fight to help children fighting cancer.

Do you ever wonder if as one person, you can really make a difference?  Anna Tobolski felt that way as she looked for a way to honor her niece, Emma. Here is Emma’s story in her aunt’s words:

Emma was born in 2004. She had strawberry blonde hair, and the biggest blue eyes; as she got older, those very eyes would give her away when she was being mischievous. At 12, she was learning French and already studying for the SAT – she wanted to be a lawyer when she grew up. Emma was awarded a full scholarship to a private girls’ school in England. They were just getting settled over there, when Emma fell one day and hurt her hip. She kept complaining of pain, but the doctors kept assuring my sister that it was just soreness from her fall and would eventually get better.

After several months of increasing pain, the doctors finally conceded to giving her an MRI – and discovered the cancerous tumor on her hip. Five days later, after emergency chemo, we were invited into a small room with her doctors – that conference will forever be ingrained in my memory.

We were told the tumor had begun in her pelvic area, and had already metastasized to both hips, femurs, spine and colon. It was stage 4 multifocal osteosarcoma – bone cancer of the worst kind in the worst place. The words uttered were completely incomprehensible…

“Palliative not curative, there is no treatment, months at best”

How could a healthy-looking child with a hip complaint be months from dying? In a total of four short months, she went from an advanced healthy student to losing all independence – she lost the ability to walk, then sit up, then arm movement. She lost her vision, and the ability to talk to us – we couldn’t touch or hold her because the pain in her bones was too great, so sweet head rubs became our coveted interaction.

With all of that in mind, it would be easy to imagine that Emma grew bitter or angry about the cards she had been dealt but that wasn’t the case. Despite her suffering, her amazing strength always shined through…the days before her death, she was wearing her favorite t-shirt: the front says “Blessed” and the back read Ps. 31:25 “She is clothed in dignity and strength.” That was our Emma.

We lost her on June 28th, 2017, just four months after her diagnosis.

As she grieved the loss of her niece, Anna knew she needed to do something to honor Emma’s memory but wondered if her efforts would really make a meaningful difference.

Last September, Anna decided to bring CURE’s Gold Bow mailbox campaign to Dawsonville. The campaign is simple – large gold bows are purchased by neighborhoods and business owners and are placed on mailboxes to help spread awareness and raise money to fund critical research for children fighting cancer.

Anna sent out an email to the homeowners in her neighborhood and solicited local businesses to put the bows out. She even ordered extras for places like city hall and the local public schools to display. Her goal was to sell 100 bows and, consequently, show that Dawsonville cares about children with cancer. Anna surpassed her goal, selling 175 mailbox bows by the time she was through.

“Sometimes I wondered if all the time spent on this campaign would really make a difference – what can a gold bow really do?” Anna said. “But I came to realize that if a gold bow makes an impact on one person it was totally worth every tear and minute spent. In the grand scheme 175 bows isn’t a lot, but it’s a great start and I know I can do even better next year.”

Anna’s efforts absolutely have an impact. Combined with others across the state, mailbox bows raised more than $70,000 in 2018.

“With the money raised through gold bow sales, we were able to pay for 14 children who had relapsed to undergo genetic testing in hopes of identifying drugs that would work for them,” explained Kristin Connor, CURE’s Executive Director. “Without this, these children would have had very few options available to them. Do efforts to sell gold bows make a difference? Ask those 14 children and their families!”

Ralph Black knows a thing or two about washing cars. He also knows about pediatric cancer because he’s been there with his son, Trey. Trey was born with a rare genetic disorder called MSUD, which inhibits his body’s ability to process proteins. The first year of Trey’s life was filled with doctors, hospitals, and more than a couple brushes with death.

But as things finally began to stabilize, Trey was diagnosed with leukemia. Because he was the first known case of a child having MSUD and cancer, doctors didn’t know exactly how to treat him.

“There was a balancing act,” Ralph said. “He had a terrible reaction to chemo at the start, and we thought we were going to lose him. Slowly, the doctors figured out how to give him enough chemo to treat the cancer without it being too much for his system. But we stayed in the hospital for four long months in the beginning.”

Trey finally got to remission and slowly started to grow up and get healthy. But his treatment has led to challenges. Their family’s experience with cancer would impact Ralph as he built his car wash.

“I always wanted to give back, and CURE was the perfect way,” explained Ralph. “We were there. We know how hard childhood cancer is on a family. While finding a cure for the disease is critical, helping families is important
to us, and CURE does that.”

Grand Slam Car Wash in Cumming donates a portion of the proceeds of their Tomahawk Lava Shield Wash  to CURE. They have also sponsored CURE events and will Go Gold with CURE in September. They encourage other businesses to get on board this September and share this important issue – children fighting cancer – with customers and employees. It’s good for business, and it’s good for kids with cancer.

If you would like more information about how your business can make a difference for kids fighting cancer, you can email Hannah McIntosh or fill out the form below. We would love to work with you.

All over the country, hundreds of businesses and schools host Gold Out events, spirit nights, denim days, percentage nights, and many other fundraisers to support CURE in September. It’s never too early to start planning a September fundraiser. CURE’s commitment to our community is to help you publicize your event to maximize its impact. If you would like more information or have an idea you would like to pursue, please contact us through the form below: