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A Million Reasons to Hope

Lake, Mary Elizabeth, and Melissa met while fighting acute myeloid leukemia (AML). Although they were different ages, they formed a unique and special bond. So did their families. The three fought the disease bravely, but each ultimately passed away just months apart. As their families grieved their loss, their shared tragedy strengthened the bond between them.

The Paris, Thompson, and Depa families

Melissa’s family already had a Named Fund with CURE Childhood Cancer aimed at advancing research into cures for AML. They invited Lake and Mary Elizabeth’s families to join them and changed the name of the fund from the Melissa Strong Fund to United for a CURE. They were, in fact, united in their hope for better outcomes for children forced to fight AML in the future. And they worked hard to raise money by selling gold bows and garden flags, washing cars, hosting golf tournaments, and creating carnivals, among other things. Their shared sweat and tears have now taken their fundraising efforts across the $1,000,000 mark, and the investment in research is becoming a source of hope for children with AML.

United for a CURE began funding Target Pediatric AML, which is the work of Dr. Soheil Meschinchi at Seattle Children’s Hospital. Through genetic testing, Target Pediatric AML’s aim is to identify common genetic changes in children with AML and target those mutations with existing drugs delivered in the right combinations.

“This is all about understanding the enemy at a deeper level and finding ways to apply that knowledge to destroy it,” said Julie Guillot, childhood cancer advocate and co-founder of Target Pediatric AML. “The data we’ve been able to build since the project started is like a snowball getting bigger as it rolls downhill. CURE and United for a CURE were the project’s largest private funders, and it is now a large international clinical trial that will benefit children and adults worldwide. Those three children really set the snowball on its way.”

Sophia

Recently, Dr. Meschinchi made a discovery that exemplifies the hope that the collection of this data can provide. There is an AML subtype that only occurs in infants and toddlers and has a very poor prognosis. As he poured over the data acquired on this subtype, Dr. Meschinchi noticed a cell cluster and drilled into it to find what was over-expressed in the cell. As he looked more into that cell cluster, he realized the same cluster exists in certain types of ovarian cancer. Fortunately, a drug is currently in clinical trials that is proving very effective against the form of ovarian cancer with the cell cluster.

This proved a timely discovery for a little girl named Sophia, who was fighting this particular AML subtype. In January, Sophia’s cancer elevated to 95% in her bone marrow – meaning that she only had 5% marrow in her bones. The rest was cancer! Dr. Meschinchi was able to get approval from the FDA and pharmaceutical manufacturer to give the ovarian cancer drug to Sophia. After only two infusions, the cancer cells in her marrow were reduced from 95% to only 1%. With her bone marrow nearly free of cancer, she was able to receive a bone marrow transplant at the end of April. Today, she is cancer-free.

Love for Lake, Mary Elizabeth, and Melissa led their families to raise money in the hope of finding a cure, and now a little girl is in remission because of their effort. And that hope is building as discoveries continue to grow.

“This project is searching for individual therapies for every child to improve their chance of survival,” said Joe Depa, Melissa’s father. “It’s too late for Lake, Mary Elizabeth, and Melissa. But we hope someday their names are attached to a cure for AML so that other children win their fight.”

Shelby’s Mission

When Shelby Howerton was three years old, she dressed as her favorite princess for Halloween. While Cinderella didn’t stay out until the stroke of midnight, she did come home with very sore legs. Her parents assumed she had shin splints because of all the walking she did to collect candy. But her legs continued to hurt long after Halloween. When she developed a persistent fever, her mother took her to the emergency room, where she was diagnosed with leukemia.

At the time, the standard treatment for leukemia lasted three years. Shelby’s doctors decided she was a good fit for a clinical trial that was shorter but more intense. She was supposed to finish in two years. But she contracted parvovirus when she was immunocompromised, which extended her treatment by six months. The trial worked, and she has been cancer-free ever since.

Shelby and her twin brother, Caleb

Today Shelby is healthy and happy. She can run a mile in under six minutes, and later this month, she will graduate from Milton High School. But she never forgot the days she fought cancer. In fact, that experience has shaped her in many ways.

When she was in middle school, her sister, Faith, started a CURE Club at Milton High School. She also became very active in the Health Occupational Students of America (HOSA) club. Faith was instrumental in the club’s push to collect toys and toiletry items for children currently battling cancer. When Faith graduated, Shelby stepped right in and continued the effort.

“We start collecting after winter break and continue until the semester ends,” Shelby explained. “Then I bring everything to CURE on Christmas Eve. Raising awareness for childhood cancer and bringing in donations is the absolute least I can do to help children with cancer.”

Shelby has plans to do much more. After graduation, she will begin her studies at Georgia Tech in the fall, majoring in neuroscience. Her goal is to become a pediatric oncologist, just like the doctors who treated her.

“Whenever I thought about a career path, my head jumped immediately to being in the hospital,” Shelby said. “There is a difference between telling your story and doing something about it. I feel like I need to do something to help kids.”

Shelby has already done so much. She has already handed off the leadership of the CURE Club at Milton High School to a new officer. Not surprisingly, she made sure to get a commitment that the toy donations will continue after she is gone.

Congratulations, Shelby. We appreciate how much you’ve done to encourage children with cancer, and we look forward to seeing all you do to care for them in the future.

Carrying Hope

Trenton Kindred will carry an extra bit of hope when he walks across the graduation stage in his scarlet cap and gown. Not only hope for his future that was once in doubt, but he also carries a special hope for others that he and his family have nurtured since 2006.

When Trenton was only one year old, he was diagnosed with stage four neuroblastoma. His parents, Greg and Ginger, had to watch as their baby began a very harsh treatment and all its horrible side effects. They were told he had a 20% chance of survival and a 70% chance of relapse. Before reaching his 25th month, Trenton endured five rounds of intense chemo, two bone marrow transplants, 21 days of being put to sleep during radiation treatments, several surgeries, 27 port line infections, and six months of oral chemo.

Through it all, Trenton fought back. His determination and love of life helped him get through these rigorous challenges. In 2006, Trenton was declared cancer-free.

“Trenton’s experience has shown us the huge need for less-toxic cancer treatments specifically tailored to kids and their growing bodies,” Ginger said. “Our family hopes that in the future, no other family will ever hear the heart-sinking words ‘Your child has cancer.’ But if that does happen, there will be hope – a hope of a cure and less toxic treatments tailored to kids that will allow them to be kids that grow into healthy adults.”

Not ones to sit idly by and let others do the work, the Kindred family started the Trenton W. Kindred Research Fund, a named fund at CURE. The purpose of the fund is to support childhood cancer research. The Kindreds and their supporters are committed to advancing better treatment for neuroblastoma and, ultimately, to find a cure for this aggressive disease. To date, the fund has raised $303,465 to fight childhood cancer! That is a lot of hope that Trenton and his family have provided to other children in the fight.

And Trenton? He’s doing great these days. After graduating with honors, he will head to Oglethorpe University in the fall, where he will study Business Administration and Economics. He’s not 100% sure where that will lead but is hoping to further his education in law school as a corporate or commercial real estate lawyer.

“He continues to amaze us with his infectious humor, shyness, and love for life,” said Ginger. “He’s an old soul, and he is fearless. But he is also reserved and has a soft soul that we think comes from staring into the darkest of places at such a young age. He is truly a miracle, and our family lives each day not taking anything for granted.”

Nicholas’s Bright Future

Later this month, Nicholas Childers will walk with his fellow seniors as they graduate from St. Andrews School. By all accounts, his future certainly looks bright. Most people who see him in his blue cap and gown will never know that there was a time when his future was in doubt. But even at his young age, Nicholas has fought a battle that most can’t fathom.

In 2015, ten-year-old Nicholas began experiencing persistent nausea and fever. His parents were told it was a virus. But after it wouldn’t go away after two months, they knew it was something more. On April 3, blood work revealed that Nicholas had B-cell high-risk acute lymphoblastic leukemia.

“Nicholas responded well to treatment in the beginning,” shared his mother, Cheryl. “But things went downhill fast. The nausea was relentless. He had pancreatitis from one chemo and had to have his gallbladder removed. Then he had an anaphylactic reaction to another drug. It was awful.”

Today’s treatment for leukemia lasts approximately three years. Nicholas reached remission in the first month. But a year later, the side effects were still affecting him, and the anti-nausea medications were not helping. So his doctors decided to stop his medications for a week to let his body recoup. His next spinal tap revealed that Nicholas had relapsed.

“At this point, Nicholas needed a bone marrow transplant,” Cheryl said. “We had everyone tested, and no one was a match. Fortunately, a perfect match was found in a woman in England. She went through the donation procedure, and Nicholas had the transplant in April 2017.”

While the transplant was difficult for him, he was declared cancer-free the following month and finished treatment in December. He hasn’t looked back.

Nicholas loves animals and talked about going to veterinary school after college. But he shadowed a friend in a veterinary clinic and decided that line of work wasn’t for him.

“After that experience, he was able to shadow our dentist and has really enjoyed it,” Cheryl said. “So he will be studying biomedical sciences at the school of Health Professions at The University of Alabama at Birmingham and plans on becoming a dentist! He’s very excited about it.”

At CURE, we love seeing kids persevere through their struggles and have the opportunity to live out their dreams. We will be cheering Nicholas on as he graduates and moves on to college!

 

 

 

 

Zoe Means Life

Parents of newly diagnosed cancer patients typically have plenty of opportunities to talk to other parents who are also fighting childhood cancer. But the last two years have been anything but typical.

As a pediatric nurse, Courtney Thomas noticed her daughter’s symptoms quickly. After a visit to the doctor, Zoe was diagnosed with leukemia in February 2020, just as the world shut down.

“The pandemic started during her treatment, which added complications,” said Courtney. “But it also prevents us from getting to know other families. The family room has been closed, and most parents stay in their room during treatment. We have felt very isolated at times. It would be nice to connect with other families who understand what we are going through.”

Additionally, events that usually bring the childhood cancer community together have been canceled or held virtually. The Thomas family participated in 2021’s virtual Lauren’s Run and had a great time walking a 2k on the Silver Comet Trail (even after Zoe fell asleep.) This year, they are very much looking forward to the in-person Lauren’s Run & Picnic.

“Zoe’s name is Greek, and it means ‘life,’” explained Courtney. “So our team name is Zoe Means Life, and we are super excited to celebrate the day with CURE’s staff and other cancer families!”

A month before Zoe was diagnosed, her father, T.J., started a new job with Wren Solutions. Even though he was a brand-new employee, the company has backed him and his family in every way possible.

“The people at Wren were great from the start,” Courtney said. “He was always going to work from home. But many times, he had to work odd hours while we juggled treatment with our other two kids. They have been wonderful.”

Wren Solutions has also stepped up to support T.J. and his family by becoming a Gold Sponsor for Lauren’s Run & Picnic.

“Finding a cure for childhood cancer is an important cause for us now,” Courtney said. “It means a lot to us for them to not only support us during treatment but to stay behind us by investing in the cause that is near to our family’s hearts.”

Treatment for leukemia is very long, but Zoe is getting close to the end. She has one more spinal tap and will take her last oral chemo in June. She has done well with treatment and looking forward to ringing the bell that signifies its end. She would also love to see you at Lauren’s Run & Picnic.

Lauren’s Run & Picnic is Atlanta’s favorite day of family fun. The event has raised more than $4.8 million to fight childhood cancer over the years. But it’s not just a run. After the race, there is an over-the-top picnic filled with games, prizes, elaborate face painting, inflatables, music and dancing, arts and crafts, a full lunch, and much more. Learn more and register at laurensrun.org. Zoe will see you there!

Paying it Forward

In late 2001, the Roberts family lived in England and planned a big weekend to celebrate their son Chad’s third birthday. They hoped to visit both London and Paris. But before they could get away, Chad developed a fever that wouldn’t break. So rather than enjoying a family vacation, they spent the day in the hospital where doctors informed them Chad had leukemia.

“I remember looking over when they drew his blood, and it looked pink because of all the white blood cells,” Chad’s father, Mike, recalled. “The next morning, we were told he had acute lymphoblastic leukemia.”

Further testing revealed that Chad was actually suffering from a different kind of leukemia, chronic myeloid leukemia (CML), which is very rare in children. The first task was to get his white blood cell count down so that he could travel home to the United States for treatment. This was only weeks after the September 11 bombing, so travel itself was no easy task. The family had to stay in England for another 45 days, but his counts finally allowed them to fly home.

When they arrived in Atlanta, preparations began for a critical bone marrow transplant. Every member of the family was tested, but surprisingly, none were a match. Fortunately, a donor was found who was a 100% match, and Chad had his transplant.

“Chad was the first bone marrow transplant recipient at Children’s Healthcare of Atlanta to get marrow from a non-related donor,” shared his mother, Bridget. “There was concern about his body accepting the marrow, but he would have died without it.”

Chad Today

Chad went home just before Christmas. A few days later, he was declared cancer-free and has been ever since. He is now 23 years old and enjoying life, working as a plumber in Flowery Branch, Georgia. Although cancer is no longer a concern, he does have some health setbacks that his family suspects might be long-term side effects from his treatment.

The Roberts family met CURE shortly after arriving at the hospital. Although their cancer story ended nearly 20 years ago, their involvement with CURE did not. They have been consistent donors since 2002 and joined our monthly donor program nearly ten years ago.

“When we first got the diagnosis, Chad was given less than a 40% chance to survive,” Mike said. “After his treatment ended, we were determined to pay it forward for other families fighting cancer. We knew we couldn’t write one big check, so monthly giving seemed like a great option. Because of CURE’s impact on us and their investment in research, we knew we wanted to partner with CURE.”

We call our monthly donor Dream Makers because every child deserves the chance to live out their dreams. Dream Makers provide a consistent and reliable source of funding. Over time, a simple monthly investment can lead to a big impact on children with cancer. If you would like to learn more about becoming a Dream Maker, visit curechildhoodcancer.org/dreammaker, or contact David Stokes at [email protected].

Nurse Nelson

She is often called “Nurse Nelson” because she will not hesitate to give instructions to her medical team. Since she is only four years old, this confidence may sound surprising. But Jeneva Nelson is the youngest of five children and is used to bossing her siblings around. At her annual visit to the pediatrician last November, her doctor pressed her stomach during the examination and felt nothing abnormal. Two weeks later, Jeneva woke up sick in the middle of the night and was in great pain in the morning. Her mother rubbed her stomach to soothe her and felt a hard knot on her right side. They went to the emergency room, where several scans, an x-ray, and an ultrasound revealed a large tumor on her kidney.

“Our doctor told us it looked like a Wilms tumor and advised us to start her on the standard treatment. That meant several rounds of chemo to shrink the tumor,” recalled Jeneva’s mother, Shauna. “But it was growing so fast that I wanted it removed. They respected my wishes and scheduled surgery a week later.”

During an eight-hour surgery, doctors removed the entire tumor and her right kidney. A biopsy confirmed it was a Wilms tumor and also showed it to have an anaplastic histology. This means that the cells’ nuclei are large and distorted, making the tumor harder to treat. Because of this finding, Jeneva had 30 weeks of chemotherapy and full stomach radiation after recovering from surgery.

“Most Wilms patients don’t have this unfavorable trait,” explained Jeneva’s father, James. “The anaplastic cells grow much faster, and there is a higher chance of recurrence after treatment is over.”

Throughout her treatment, Jeneva has been a regular fun-loving child. There are times she doesn’t feel well, but she seems to bounce right back and will give her family a thumbs-up when she’s ready to play again. Her mother describes her as resilient and strong. While they will be vigilant to monitor Jeneva after treatment, Shauna and James refuse to live in fear.

“I’m hoping and praying that this treatment works, and we have no relapses,” Shauna said. “But because of what I’ve read and been told, I won’t be surprised. That isn’t me being negative – it’s like having a spare tire in your trunk. You don’t want to have a flat, but the spare means you are prepared if it happens.”

Jeneva will have scans every three months, and her parents will be on the lookout for fevers, bumps, and any unexplained sickness. While this journey has involved many hard days, there have also been some beautiful moments.

“It’s been a sad journey, but it has also been heartwarming to receive such love from family, friends, and even strangers,” Shauna said. “CURE is an organization that has been with us from the very beginning. We have never felt that we are alone.”

Anderson’s Change of Plans

At the age of ten, Anderson had already chosen his career path. After a brief stint in the minor leagues, he planned on playing major league baseball – preferably for the Braves. He was working hard toward his goal, but after a batting session in 2013, Anderson complained of chest pain. As the pain persisted, his parents took him to the emergency room, where they thought it was likely a pulled muscle.

A few days later, he began to feel sick to his stomach. So they went to the emergency room, where a blood test revealed that Anderson had leukemia. He immediately started the standard treatment, which was scheduled to last three years.

“Anderson always took longer than average to rebound from the chemo,” said his mother, Sally. “In fact, early in his treatment, his count stayed very low, and he got a severe infection called typhlitis.”

Typhlitis is an infection of the intestine, and in Anderson’s case, it caused him all kinds of trouble. He needed emergency surgery, and his body struggled to fight off sepsis in the area. After they got that situation under control, Anderson wasn’t able to walk because the infection had moved to his upper leg.

“He was such an avid baseball player that it was awful thinking that he might never be able to play again,” Sally recalled. “It took six months for him to be able to walk on his own, and he still has a little hitch in his gait.”

While he was learning to walk again, a music therapist put a guitar in his hands. That moment changed the trajectory of his life. Anderson loved playing that guitar, and he developed a love for music that became a guiding force in his life. But his battle with cancer wasn’t over. His medical team ended his treatment early because of his dangerous sensitivity to chemotherapy.

Unfortunately, Anderson relapsed 15 months later. His doctors decided on a 2-year treatment that was slightly less toxic. He tolerated it well, but ten months after completing it, he relapsed again.

“We were shocked when they said it was back,” Sally said. “Anderson had no symptoms. He was just getting routine labs.”

In 2020, Anderson began treatment for the third time just as the pandemic swept across the world. When he reached remission, his doctors decided to start (CAR) T-cell therapy. This new form of treatment uses the patient’s own immune cells to fight cancer by changing them in the lab so they can find and destroy cancer cells. It worked perfectly for Anderson. He has been in remission since.

“We are very blessed that the T-cell therapy was available for Anderson this time,” Sally shared. “Our children deserve the very best treatments, and the only way we will get there is by funding research.”

That was a year ago. Since that time, Anderson has taken up golf, graduated high school, and focused on his love of music. In fact, he will begin his studies at Belmont University this fall, where he will study to be an audio engineer. No longer focused on baseball, Anderson plans to work in the music business – all because of a guitar handed to him during treatment.

Lily’s Long Weekend

A long weekend usually involves rest and celebration. But last Labor Day was the longest of long weekends for Lily Suddeth and her family. Lily had just started preschool weeks before, and her teachers noticed that she was quiet and didn’t like to be put down – especially after nap time. Her parents thought she simply might be adjusting to her new routine and surroundings. But when she started waking up during the night, they decided to take her to the doctor.

“At first, our pediatrician suggested she might be teething,” recalled Lily’s mother, Allison. “But her coloring was off and a blood draw showed she was severely anemic. So they sent us to the hospital for further testing.”

Because of her doctor’s sense of urgency, Lily’s parents suspected she might have COVID. But as the long weekend progressed and more tests were ordered, it became apparent that they were dealing with something else entirely. On Tuesday, Lily was diagnosed with acute lymphoblastic leukemia (ALL) and began her treatment.

“The situation was difficult because only one parent was able to be with the child in the hospital,” said Allison. “Since it was the height of the pandemic, we certainly understood the need for such rules. But my husband and I process information very differently, and it would have been helpful if both of us could have been there to support each other and ask questions.”

While they certainly had questions, this was not the first time the Suddeth family had dealt with cancer. Allison’s older brother, Daniel, was diagnosed with the same form of leukemia when he was two years old. She also has a cousin whose son recently finished his leukemia treatment and is a healthy seven-year-old. Both her mother and her cousin became invaluable resources for her in the early phase of treatment.

“I wasn’t born when Daniel was diagnosed, so I didn’t know all that went into his fight with cancer,” Allison said. “The treatment for ALL has changed since then. So it was great to have a cousin who had just been through it. Knowing both of them had survived gave us a great sense of hope and assurance that we could trust in God’s plan for Lily’s life.”

Lily reached remission after the first month of treatment, and her parents decided to enroll her in a clinical trial of a drug called Blinatumomab. This drug is usually given to patients if their cancer comes back after treatment. Studies have shown that receiving it during treatment can increase a patient’s initial survivability and prevent relapse. It proved difficult to administer to a patient so young, however.

“The medicine is typically held in a backpack and given 24 hours a day for 28 days,” Allison shared. “But Lily was too small for the backpack so she had to have a pack with a long cord. She got used to it in no time and actually came to like having mommy or daddy following her around all the time.”

Lily is doing great now. She spends most of her time trying to keep up with her older brother and sister and loves to play outside, ride her scooter, and swing. She should reach the less intensive stage of treatment before the fall so when Labor Day rolls around this year, Lily and her family can relax and enjoy the long weekend together.

 

Catherine’s Special Initiation

Catherine Williams could light up a room with her infectious smile, boundless energy, and natural leadership ability. She was an exceptional student, played varsity volleyball, and was a member of the Delta Upsilon Chapter of Kappa Kappa Gamma at University of Georgia – even though she passed away shortly after graduating from high school.

During her junior year at North Atlanta High School, Catherine began to suffer knee pain. Since she was a volleyball player, her parents thought it was a sports-related issue. As the pain increased, Catherine tried physical therapy which didn’t help. She soon had an MRI that revealed a tumor on her left knee.

“Looking back, the tumor had been there a while,” Catherine’s mother, Anne, recalled. “By the time we found out she had osteosarcoma, the cancer was metastatic and had moved to her lungs.”

Catherine Williams

This was not Anne’s first brush with cancer. When she was pregnant with Catherine, her sister passed away after a battle with breast cancer. In fact, Catherine was named after the aunt she never met.

After chemotherapy, Catherine had surgery to remove the tumor and reconstruct her knee. The reconstruction never worked, however, and doctors were later forced to amputate her leg. That surgery was followed by more chemotherapy and radiation, which also proved to be ineffective. In March of 2020, Catherine was sent home without treatment options as the pandemic started to spread across the country.

“COVID was somewhat of an equalizer for Catherine,” Anne said. “All of her friends were out having fun and she couldn’t. But when quarantines hit, everyone had to stay at home.”

While she was at home, a hospice nurse discovered that Catherine hoped to join a sorority when she got to UGA that fall. Since both Anne and her mother had been Kappas in college, the nurse reached out to the University of Georgia chapter and got a welcome response.

“We have some members of our sorority who know Catherine’s family and had been following her treatment,” said Lilia Sullivan, the Philanthropy Chairman of Georgia’s Kappa chapter. “When we got the call, we contacted Kappa headquarters immediately and got their support. This unfortunate situation became a great way for the community to come together for Catherine.”

Lilia and Saville Sullivan

Lilia knows about the need for support for children with cancer. When she was sixteen, she was diagnosed with a brain tumor. Shockingly, three weeks later, her older sister, Saville, was diagnosed with a different type of brain tumor! They went through chemotherapy, radiation, and surgery together. Both sisters survived and are thriving today.

“My parents say that period in our lives was like an out-of-body experience,” Lilia recalled. “Everything we were going through was completely draining emotionally, physically, and mentally. I’m not sure how we would have done it without our faith and our family, friends, and neighbors in Albany.”

When the call went out about Catherine, local Kappas came to the William’s house, and members from all over the country attended on a Zoom connection as Catherine was initiated.

“It was a sweet and special afternoon,” said Anne. “It was also the last time Catherine was able to come downstairs.”

Catherine “Cappie” Williams died peacefully at home on June 2, 2020, after a courageous 13-month battle with osteosarcoma. She was 18 years old.

Although she was initiated into the sorority, she was unable to participate in the academic and social life that the rest of the Kappas enjoy. As Philanthropy Chairman, Lilia is determined to help build a legacy for Catherine in Athens – even though she never attended a class. To do this, the Kappa chapter is planning a run in her memory. The event is called “5k for Kappie” and will start at the Kappa house and finish at one of their favorite restaurants, Saucehouse Barbecue. The 5k will be held on Saturday, March 19, and proceeds will benefit CURE Childhood Cancer. Together, the University of Georgia chapter of Kappa Kappa Gamma is proving that sisterhood knows no bounds.

If you would like to register for the 5K for Kappy, please click here.