A Rain on Parched Hearts

Anna Hanger was an extraordinary young woman, wise beyond her years and generous beyond words. In June 2003, Anna was diagnosed with a brain tumor. Her treatment was long and hard, and she suffered many complications which caused her to be hospitalized for the better part of a year. While she achieved remission in 2004, it was short lived, and her cancer returned just months later. Doctors told her family there was no further treatment for Anna and urged her parents to quickly take a Make-A-Wish trip due to Anna’s poor prognosis and their concern that her quality of life would begin to decline quickly.

Anna and her parents did take a “final” trip. Anna was scheduled to have surgery two days after they returned. Prior to surgery Anna had an MRI. With tears in her eyes, Anna’s doctor shared the incredible results: Anna’s tumor was shrinking. Anna’s tumor continued to shrink over the next year. Although she remained cancer-free for many years, Anna faced several challenges in her young life.

No one would have blamed Anna if she became sad and angry as a result of her limitations and very serious challenges caused by the brain cancer and treatment. But that just wasn’t Anna. From the time she was diagnosed and received an outpouring of love and support, including gifts and cards from family and friends, Anna became very aware of the other children at the hospital who were not getting the same kind of support. It touched Anna deeply and was very hard for her to accept. In spite of the fact that Anna was almost completely deaf, had severe scoliosis from radiation treatments, significant balance issues, loss of feeling on one side of her face, and many other permanent disabilities, she became obsessed with finding a way to help the other children with cancer. The idea of Anna’s Angel Fund was born.

When people asked what they could do for her or what gifts they could bring her, Anna suggested they make a donation to her Angel Fund instead.

The Angel Fund gave Anna a way to help the children who touched her heart and also became something positive for her to focus on while facing her own battles every day. Anna maintained this fund for years, and of course, she insisted that all of her financial aid and gifts be made anonymously. Over the years, Anna raised and gave away more than $600,000 to children and families whose lives had been devastated by pediatric cancer. Anna found joy every day in making her gift of life count for other children. The fund was eventually retired, but Anna never stopped caring about and working to make life better for children with cancer.

“Through the generosity of its supporters, Anna’s Angel Fund will be a much-needed rain on their terribly parched hearts.”

In June 2019, Anna’s cancer returned, and she passed away in August 2020. Her parents, Larry and Lisa, recently faced their first Thanksgiving without their precious daughter. They drew on her grateful spirit and generous heart to get through.

“Throughout Anna’s life, and especially during her battle with cancer, we’ve expressed just how precious it has been to embrace gratitude,” Lisa shared. “Even now as we face the hardest days of our lives and struggle to learn to live without Anna, gratitude and grace sustain us.”

It is in that same spirit that her family has revived Anna’s Angel Fund as a Named Fund of CURE. All funds received will be directed towards CURE’s patient and family support programs.

“Reviving Anna’s Angel Fund is what Anna would want,” Lisa said. “Donations to the fund are directed toward CURE’s patient and family support programs because families fighting cancer are trapped in thoughts of mounting bills, loneliness, and fear of what the future holds. Through the generosity of its supporters, Anna’s Angel Fund will be a much-needed rain on their terribly parched hearts. In that way, our sweet Anna will still be making life better for children with cancer and their families.”

A gift to Anna’s Angel Fund will help to continue her legacy of caring for and helping families of children with cancer.

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Cancer for Christmas

My wife sat at her laptop furiously compiling the lists for our four girls. She checked it once, then again while travelling to website after website scouring the internet for the best price and delivery. Items were added to baskets and carts checked out at such a frantic pace that I literally felt a warmth emanate from the credit card in my back pocket. Shopping at a fever pitch – Christmas delivered in two days or less. Not like most years, where she disappears for hours on end to find the perfect gift at the mall. She didn’t have time for that because we got cancer for Christmas.

We didn’t ask for it. It wasn’t circled in a catalog or written in red crayon. No one sat on Santa’s lap and begged for it. No, cancer just showed up unannounced and took our year away. So rather than spending quality time with each of the girls to weigh their enormous wants against our limited budget as in years past, my wife spent Saturday morning hunting and pecking under great duress. Do they have the right size? Will it be delivered on time? Is that really something she will use, or should we just give her cash?

At some point during the madness, I asked her what she wanted for Christmas. She paused to consider. Her eyes got red and her mouth failed her. She didn’t answer, but I knew. I knew what she wanted the second I asked the question. It was the only thing either of us wanted.

We wanted our baby to stop hurting. We wanted her to stop having to face treatments that made her sick and waste away. We wanted her legs to work. We wanted her hair to grow back so people wouldn’t stare at her.

We wanted to give cancer back!

But giving cancer back wasn’t an option for us that year, so we worked hard to navigate cancer treatment and the holidays together. Did you get cancer for Christmas? From our experience, here are five things you can do to make your family’s holiday season as bright as possible.

  • Keep as many holiday traditions as you can. Much-loved traditions remind us of better times when the current situation is not the way we would want it.
  • Take cues from your little patient. If they are ready to celebrate, celebrate hard. If they need to rest, accommodate that.
  • Find a balance. Your other children are hurting too, but they need and deserve to have as much normalcy as they can. It is a tough and stressful job to find a balance that allows everyone to have the best holiday possible. But it can be done.
  • Be open and get input. If you can find out what is most important to each family member, no one has to lose the things they love best about the holidays.
  • Find joy wherever you can. Whether in the giving of special gifts or time spent together, there is always joy to be found if you seek it out.

Dealing with a cancer diagnosis during December certainly puts a damper on holiday spirit. But it doesn’t have to end it altogether. Although it may seem impossible, if you are intentional, you and your family can still have a wonderful holiday.

Catie’s Fund

Making a Difference Through Community

Effingham County resident, Catie Wilkins was diagnosed with an aggressive brain tumor on her first birthday. Catie fearlessly fought her cancer, but the chemotherapy compromised her immune system so severely that she succumbed to a common virus before she reached her fifth birthday. In response to this tragedy, a special community has formed that is making a meaningful impact in the fight against pediatric cancer.

Effingham County sits on the Savannah River and while it has grown, it still boasts the small-town feel of its agricultural heritage. It is a place the Wilkins family is proud to call home. In the aftermath of their tragic loss, they knew Catie would want them to help other families, so they founded a Named Fund at CURE in her honor.

“Catie’s treatment was hampered by a lack of available options,” Jenny said. “There has been little research in treating childhood cancers, and our family felt that this needed to change.”

Their community embraced Catie’s Fund from the beginning. This year, the fund surpassed an incredible milestone by raising more than $2 million since its inception. This wouldn’t have been possible without people like James Carlson.

James owns Carlson & Company, and while he has no direct tie to childhood cancer, he has seen local families struggle while going through treatment. He and his company are actively involved in the Catie’s Gathering dinners, the primary fundraisers for Catie’s Fund, and donate event space, tents, and food.

“I’ve watched Catie’s Gathering evolve from hostesses using paper plates and plastic forks to using fine china and silverware,” James laughed. “I’m proud to be a part because of the impact it allows CURE to have in our community.”

The schools in Effingham County have been a huge part of the success of Catie’s Fund. The leadership at Springfield Elementary School wanted to impress upon their students the value of making a difference.

“We had a student who fought cancer, and we wanted to give the kids ways to help,” said teacher, Allison Brand. “Through dress-down days, coin drives, and other fundraisers, we’ve been able to contribute a lot of money. It’s great to see the kids really get into helping other kids.”

Apryl Lee attended a Catie’s Gathering event and felt the need to pitch in. Apryl founded a local SLAM (Sweat Like A Mother) group. This is a community of mothers and their children with a goal of fitness and health. While they celebrate their healthy children, she has used her forum to raise awareness and money for Catie’s Fund.

“I wanted to set an example for my children,” Apryl said. “I want them to know that we do what we can, when we can, to help others.”

Being next door, adding a Catie’s Gathering dinner in Savannah was a natural progression that became a reality in 2013 when Mandy Garola attended the Effingham event while her daughter, Cora, was in treatment. Seven years later, the Savannah Catie’s Gathering continues to thrive and has been supported by individuals and businesses, such as Coastal Electric, which has become the event’s title sponsor.

Thanks to the efforts of friends like Jody Polk, the Catie’s Fund community spread even further. Jody’s daughter, Anna Hays, is a leukemia survivor, and five years ago, Jody brought a Catie’s Gathering dinner to Statesboro. After the death of a local child, Morgan Frison, Jody spoke of what motivates her.

“Morgan’s life held such beautiful potential,” Jody said. “Morgan and children like her are the reason that I will continue to raise funds for CURE and push for less harsh treatments created specifically for children.”

Likewise, longtime friend of the Wilkins family, Angel Shurling, started a Catie’s Gathering event in her hometown of Bryan County four years ago.

“There were two children in our community who were diagnosed with cancer,” Angel said. “Every heart was open to them, and people wanted to make a difference. Catie’s Gathering gave them that chance.”

Thanks to their amazing and ever-growing community, the Wilkins family, Catie’s Fund, and all those involved are making a huge difference in the lives of children fighting cancer today and those yet to be diagnosed. It has become a beautiful legacy for a little girl taken too soon.

To learn more about Catie’s Fund and Catie’s Gathering events

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Giving Back

Andy and Jana Dufresne didn’t feel like they belonged in the emergency room. On that chilly December evening, the hospital was packed with children who were obviously sick while their son, Watson, only had a rash and a low-grade fever. But their pediatrician had sent them, and so they waited their turn to be seen. The news that soon came their way was shocking.

“The nurse drew blood from Watson, and an hour later the doctor came back with a diagnosis of leukemia!” Andy recalled. “Watson’s symptoms were so mild that we never even considered cancer. But there we were discussing treatments and outcomes. What we thought was a rash were actually tiny bruises.”

Watson had acute lymphoblastic leukemia, which is the most common childhood cancer and the most treatable. Since it was a Friday when he was diagnosed, Watson was scheduled for port placement surgery the following Monday morning. That day would also start a chemotherapy regimen that would last more than three years. For young parents, it was a daunting prospect.

“We started to doubt ourselves as parents,” Andy said. “We wondered if there was something in our house or if we had done something to bring this on.”

Andy and Jana felt compelled to enroll Watson in a study that would compare the standard treatment to a more aggressive one. Their hope was that doctors could learn ways to improve outcomes for children yet to be diagnosed. Watson was randomized into the standard group, and he took the physical brunt of treatment while his parents struggled with the emotional side of it.

“We had great family support and were embraced by organizations like CURE which are there to help,” Andy shared. “But it was difficult to watch him go through so much. Watson wasn’t able to leave the house for the first nine months, and his treatment totally dominated his life. In fact, when his brother was born, Watson asked what was wrong with him because his brother didn’t have a port.”

It has been ten years since that fateful day in the hospital, and Watson is doing great. His family stayed away from things related to cancer for a time but began to feel they have a responsibility to other children and families facing childhood cancer. Through various efforts, they began fundraising for CURE and recently found a new way to engage.

“We love that CURE is focused on children and balances their efforts between funding research to eradicate cancer and caring for families,” Andy said. “I happened to be on the website and saw the page about the Young Professional Leadership Council. I thought it looked like the perfect thing for me.”

The Young Professional Leadership Council (YPLC) is a group of dynamic and emerging leaders in the Atlanta community with a passion for advancing CURE’s mission. Council members meet monthly and support CURE through various volunteer opportunities and their annual fundraising event, Spring Fever.

“I never want to lose sight of what Watson went through,” Andy said. “The YPLC allows me to work with like-minded individuals who are socially-active and charitable. I feel obligated to help based on our experience, but the YPLC lets me serve out of a passion for the cause.”

Andy has recently joined CURE’s Board of Directors and we appreciate his dedication and willingness to serve in that capacity.

How to Keep a Routine with a Child in Treatment

By Mariah Dantzler, MS

It is important to understand that it may be inconvenient or nearly impossible to keep a routine while a family member is undergoing cancer treatment. But we know that rhythm and routine create feelings of safety and security. The following tips may help your efforts to create a routine within your family during this time.

When a child is first diagnosed with cancer, the parents’ focus is inevitably on getting their child the care and treatment they need. This focus continues through treatment and can last months or even years. Parents also do everything they can to ensure the rest of the family is cared for. However, due to doctor’s visits, hospital stays, and inevitable emergencies, things that had been normal in family life may fall to the wayside as the child in treatment needs to take priority. In order to acknowledge the shift in priorities while protecting the rhythm of the family, consider the following:

 

    • Identify 3-5 lifelines. Lifelines can be close friends, family, or members within your community who will rally around you and take on any task thrown their way. These are people who will help with transportation needs, laundry, lawn care, or whatever needs to be done.

 

    • Create a family mission statement, crest, or logo. You can often refer to this with your family in times of stress or hurt to bond together.

 

    • Try to keep siblings on their schedules as much as possible. For instance, keep them on their sports teams, in their favorite activities, and allow them to continue to have play dates. Rely on your lifelines to work out logistics.

 

    • Dedicate a time each month to have uninterrupted family fun time.

 

    • Keep bedtimes the same.

 

    • Make a chart of things that may change during this time, also noting what will still stay the same. This allows children to anticipate and prepare for inevitable change – but still feel confident they can rely on some things to remain the same.

 

    • Try to honor choices and individual preferences for children in the family in the areas they can control. Allowing them to choose such things as the clothes they wear, the snack they eat, or the television show they watch increases their feelings of having some healthy control of their lives.

 

    • Play with your children whenever you can. Younger children rarely discuss their problems openly, but they tend to show you how they are feeling through play and activity.

 

    • Encourage your kids to still have fun when they can. They need to know it is still okay to experience joy even during this challenging situation.

 

Coping with cancer is never an easy task, especially when a child is the one who is suffering. Just remember, your whole family is in this together, and all of your children need your attention more than anything else. Cleaning and laundry can wait! Love on them, spend time with them, and give all of them hugs just because.

 

Mariah Dantzler, MS is an Associate Professional Counselor who works with children and their families at the Summit Counseling Center, located in Johns Creek, Georgia.

The Ripple Effect

What if you could take your money and double or maybe even triple it? Investors are looking for that kind of return every day. One such man, Dr. George MacMaster, was pondering how to do this, too. But his quest for profit was never for his own financial gain.

Dr. MacMaster (or Dr. Mac, as he is affectionately known) married his high school sweetheart, went to dental school, then settled in the small, lazy town of Alpharetta to start his pediatric dentistry practice. He founded Alpharetta Children’s Dentistry in 1989. At that time, he had no way of knowing the population boom that would soon spring up around him.

“When we started our practice, the exit of 400 was a stop sign,” he laughed. “Old Milton Parkway was one lane in each direction.”

Alpharetta is now one of the largest and wealthiest cities in Georgia. As the city grew, Dr. Mac’s family and practice did also. He and his wife have three adult children, and the practice now has four pediatric dentists and an orthodontist. Years ago, he began looking for a cause that he, his family, and his practice could support. Through a friend whose wife was a pediatric oncology nurse, he found out about CURE.

“I wanted to find a good cause that everyone could get behind,” Dr. Mac said. “If children with cancer don’t move you, then nothing else will!”

But Dr. Mac wanted to do much more than simply write a check. He wanted to invest his money to have a greater impact, while ensuring no overhead cost to CURE. So he began having meetings with his staff where they considered how to accomplish that, considering ideas like a charity race or concert. They finally settled on a coin drive because it offered many possibilities – and Coins4CURE was born.

“First of all, we’re not even asking for a buck,” mused Dr. Mac. “Change is disposable these days, and we like to say that we don’t want your quiet money, just the noisy kind. Secondly, we really like the idea of kids helping kids and we felt like we could start our program in schools.”

The ripple effect of the creation of Coins4CURE has been enormous. Since 2014, 250 schools, businesses, and organizations have raised more than $358,000 – one coin at a time. Dr. Mac’s initial investment has yielded incredible returns, and he offers some advice for those considering something similar.

“It’s a simple formula for us,” he explained.

“Cash plus effort multiplies impact. We provide the tools to raise money, but it also requires a highly motivated person at each location to take the ball and run with it. We just have to find those people. I have not been personally affected by childhood cancer, but this is the right thing to do.”

We applaud Dr. Mac and his team for their hard work. Their efforts have advanced research and brought tangible help and comfort to children fighting cancer and their families. They’ve also created a model that others can follow to create a ripple effect of their own.

 

A CURE-funded Study Moves to Clinical Trial

Acute myeloid leukemia (AML) is a devastating and aggressive blood cancer that affects nearly 500 children in the United States every year. AML symptoms develop so rapidly that most children feel well just weeks before diagnosis. Despite intensive research over the last 50 years, there are still only a few drugs available to treat this disease, and the survival rate is only 50%. The treatment for AML entails extremely high, toxic doses of chemotherapy. Side effects of chemotherapy include profound impairments to immune function, cardiac toxicity which can lead to heart damage, and kidney and liver dysfunction that can cause permanent, profound disability or death. In fact, current AML drug dosages put children’s organs and immune systems under so much stress that nearly 10% of AML patients die from complications of treatment rather than the disease.

Dr. Alexandra Stevens

While we can temporarily control and improve the symptoms of AML so that it becomes undetectable in the blood, the disease returns with a vengeance in nearly 50% of children. When AML recurs, it is often resistant to the few drugs effective against it, making second remissions and cures particularly challenging. To improve survival of this aggressive cancer, it is critical that scientists identify more effective, better-tolerated drugs with fewer side effects that can be safely incorporated into existing treatment regimens.

While reviewing scientific literature, Dr. Alexandra Stevens of Texas Children’s Hospital read about an antibiotic drug called atovaquone that killed a blood cancer found in adults. In reading how the drug worked, Dr. Stevens believed it would be effective against pediatric AML cells. Dr. Stevens found this drug to be particularly attractive for several reasons:

  • It is already FDA-approved and has known dosing recommendations for pediatric patients;
  • It has no appreciably serious side effects, which makes it ideal to combine with intensive AML therapy; and
  • It is already used to prevent a type of pneumonia, known as PJP pneumonia, that children with AML are at risk of acquiring and treated for prophylactically as a matter of course. This means that incorporating atovaquone into existing AML treatment should be seamless; physicians could simply use atovaquone for PJP prevention so that children could also reap the drug’s potential anti-leukemia benefits in addition to warding off PJP pneumonia.

Dr. Stevens began conducting studies testing atovaquone on pediatric AML cells in the lab, eliciting promising results: this well-tolerated drug performed as well in petri dishes as did the toxic chemotherapy that forms the current basis of pediatric AML therapy.

In response, Dr. Stevens’ team immediately began preclinical studies to confirm that incorporating atovaquone into AML treatment regimens would be safe and effective. In two short years, the team opened a limited-institution trial to identify potential issues with co-administering atovaquone with standard, upfront AML chemotherapy.

The preclinical work was recently published, and the clinical trial has already achieved more than 70% enrollment. Importantly, the next Children’s Oncology Group trial for pediatric AML will collect data on which patients receive atovaquone for PJP prophylaxis and enable researchers to use that data to help determine whether atovaquone reduces the frequency of relapse in a real-world setting.

“Our research team looks forward to continuing their work to learn how best to harness atovaquone’s effects,” said Dr. Stevens. “With the instrumental support of CURE Childhood Cancer, we hope to improve outcomes in patients with pediatric AML.”

 

Get Out and Move! A Survivor’s Guide to Exercise

Karen E. Effinger, MD, MS

We all know that physical activity and exercise are good for our health, but it’s especially important for childhood cancer survivors. Research has shown that adult survivors of childhood cancer who get regular vigorous exercise have better long-term health and live longer than those who don’t. Some survivors are at risk for heart disease, and studies have shown that these survivors can decrease their risk by performing aerobic exercise. Aerobic exercise, also known as “cardio,” includes activities like walking fast, dancing, swimming, running, and cycling. Studies have also shown that physical activity helps mood, concentration and memory in all survivors.

The American Cancer Society and American Heart Association provide age-based recommendations for physical activity.

Preschoolers (ages 3-5)

  • 3 hours of active play per day
  • Replace sitting activities with play

Kids/Teens (ages 6-17)

  • 60 minutes per day of moderate to vigorous physical activity
  • Vigorous activity at least 3 days per week
  • Muscle and bone-strengthening activities at least 3 days per week

Adults (age 18+)

  • 150 minutes per week (30 minutes, 5 days per week) of moderate physical activity or 75 minutes of vigorous activity or a combination of both
  • Muscle and bone-strengthening activities at least 2 days per week
  • Spend less time sitting

Survivors should follow these guidelines in order to improve their overall health. Strength training should include all muscle groups and should not exceed 2-3 times per week. For survivors who received treatment that may impact their heart, weightlifting should be limited. Survivors at risk for heart disease who would like to perform more intense exercise should be evaluated by a cardiologist first.

Tips for increasing exercise include:

  • Start out slow – don’t try activities that are too hard or not interesting
  • Pick activities you like
  • Find a friend or family member to do activities with
  • Alternate exercises to work different muscles
  • Instead of the elevator, take the stairs
  • Walk down the hall or march in place when a commercial comes on tv
  • Turn the screen into an exercise machine through exercise or activity videos
  • Take a brain break before homework to help with focus
  • Remember: Some is better than none!

Research has shown that active kids, teens, and young adults have better quality of life, heart health, lung health, bone health, attention, memory, school performance, and sleep. Exercise also decreases risk for chronic medical conditions (like diabetes, high blood pressure and high cholesterol), obesity, anxiety, depression, and fatigue. Survivors are encouraged to get as much physical activity as possible.

 

Giving Cancer the BOOT… Army Style

Chief Warrant Officer 2 Noah Garner is a helicopter pilot in the United States Army. He entered the service in as an infantryman, then became a sniper and served in combat duty. After he rotated home, he made the decision to pursue aviation and hasn’t looked back. While his military career has taken many twists and turns over the past twelve years, the last three have been particularly turbulent because his youngest daughter, Chloe, was diagnosed with a brain tumor.

In 2017, Chloe had a slight head tilt and Noah and his wife, Annie, noticed her eye was shaking. They took Chloe to the base physician, who said she didn’t feel prepared to diagnose the issue and sent them to the hospital.

“We were supposed to be there for a quick 30-minute MRI,” recalled Annie. “But that turned into five hours. When the doctor finished, he came in and said she had a tumor.”

Further testing would reveal that her tumor was an optical glioma, and because of its type and location, it is rare for such a tumor to be surgically removed. Most of the time, the goal is to stabilize the tumor to prevent growth. Her doctors began to closely monitor Chloe’s tumor, and after nearly a year it was declared stable. Unfortunately, tumor growth was evident at a scan four months later, and even more in the next scan. So Chloe began a chemotherapy regimen designed to shrink it. Being separated during her treatment proved to be difficult for Noah.

“That was tough, especially during long rotations of nine months,” Noah said. “We relied on the internet to Facetime each other and send Marco Polo videos. I would get up very early in the morning so I could spend time with them before they went to bed.”

Noah was serving in Europe at the time. When they got the bad news of tumor growth, the commander of his unit was very supportive and worked to get him home as soon as possible.

The new chemo yielded frustrating results. Chloe’s tumor continued to be erratic – it would be stable at one scan and show growth the next. After another year, her medical team put Chloe on a new chemo called Avastin. And it worked!

For the first time, Noah and Annie heard the words, “Significant tumor reduction.” Noah was out of the country at the time, but the family celebrated this victory long distance!

Chloe recently finished her treatment. While she is feeling good, her vision has been affected. She has optic nerve damage from the tumor and her vision isn’t 20/20. But right now, she’s back to dancing and enjoying her favorite movie, Frozen. Her mother describes her as feisty and stubborn – traits that helped carry her through her long and difficult treatment.

On November 2, Chloe rang the bell to signify that she’s finished with cancer. This was something Noah would never miss. While his duty will force him to return to the base quickly, Noah drove up from Savannah to celebrate with his baby. Together they gave cancer the boot – Army style!

On Veteran’s Day, CURE would like to thank Noah and all those who serve and have served.

Hayden’s Hundred

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 7th 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.