fbpx Skip to main content
Category

Childhood Cancer

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.

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!

 

 

 

 

Advancing Science Together

As you read this, CURE’s Peer Review Committee is evaluating 44 research proposals from scientists at 27 institutions who are seeking funding. Based on their feedback, we will select the life-saving research that we fund in our next award, and you can have a direct impact on the process.

These proposals have the potential to significantly improve treatments for pediatric cancers where current options are not adequate and, if funded, to be in clinical testing or treatment phases within 2-3 years.

The committee is reviewing cutting-edge research and will score proposals the researchers hope will lead to better treatments for cancers that affect children. These proposals include new methods to fight the most common cancers like leukemia and lymphoma. They also seek to advance science that will impact children diagnosed with the hardest to treat brain tumors, sarcomas, and metastatic disease.

These proposals have come in from leading research institutions across the country.

Each submission is being reviewed by two committee members who have specific knowledge and interest in the cancer type of the proposal. In May, we will host a meeting during which every submission will be discussed by the entire committee. Members will have the opportunity to ask questions and vote to accept or change the overall score. These final scores will be ranked and presented to CURE’s Board of Directors on June 21, and final funding decisions will be made.

This is where you come in. Before the funding decisions are made in June, you can increase the amount of funding available for these projects by renewing your gift by May 31. Additionally, because of a $100,000 matching gift from a generous donor, your impact could be doubled. This is a chance for you to make a direct impact on the way we treat childhood cancer.

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.

Part of our Family

Hotel Equities is a hospitality management firm that manages several hotels in Georgia. The company is a faith-based organization whose core values center around twelve statements espousing kindness, integrity, and professional conduct. Hotel Equities believes in supporting local charitable organizations and years ago became a sponsor of Lauren’s Run and CURE Childhood Cancer Annual Picnic.

This relationship grew as CURE realized the need to start a lodging program that could provide hotel stays for families who must travel long distances for treatment. Hotel Equities quickly agreed to support this endeavor and introduced CURE to the management of the Residence Inn, which is situated near Children’s Healthcare of Atlanta. This program became increasingly important during the pandemic as long-term stay facilities were forced to close.

Susan Zuppardo, Calvin Easter, and Rosa Ventura

“Because of our location, we are typically full,” said Susan Zuppardo, Regional Director of Sales for Hotel Equities. “But we always make room for a CURE family. And when a cancer patient stays for an extended period, the staff gets excited about the opportunity to give them a safe haven during a difficult time!”

While the hotel staff is committed to treating every guest like family, two little girls stand out. Raegan and Charli both suffered from the same rare brain cancer, and their families traveled to Atlanta for long-term treatment.

“These two girls and their families were amazing,” Susan said. “Even though their children were very sick, they always smiled and talked to everyone. Charli liked to have her car decorated, so we went and got special markers so we could draw on her windows.”

Raegan

Raegan and her family stayed at the Residence Inn for 12 weeks while she endured very difficult treatment. The entire staff worked hard to make the hotel a home away from home for them. Calvin, the hotel’s Chief Engineer, took ownership of being their personal shuttle service to and from treatment. There were days when he worked late, staying until he got the call to pick them up. Rosa, the property’s Executive Housekeeper, understood the anxiety of a cancer patient during COVID-19. So she always made sure everything was extra clean in their rooms. The love and care the family received at the hotel spread out even further.

“I followed their story on Facebook and talked about them to my family all the time,” Susan said. “When my sister in Connecticut heard Raegan loved unicorns, she ordered a special book for her. My mother came to visit and was heartbroken because Raegan wasn’t able to bring very many toys from home. So she went out and bought a kitchen playset for her to play with during her three-month stay.”

Both girls eventually succumbed to their disease, but the friendships built during their stays have endured.

“I’ve kept the pictures they drew me and get choked up sometimes when I look at them,”

said Susan. “They became a part of our family.” The sentiment goes both ways. Raegan’s parents, Marc and Andrea, said, “Susan and crew made the Residence Inn feel like home. What stood out was that they were genuine – no fake smiles or forced ‘How is Raegan doing?’ questions. They were genuinely concerned. They went above and beyond for us because that’s the kind of people they are. We are better people for knowing them.”

We are honored to be partners in philanthropy with such a generous company. Hotel Equities has become a very important part of how we ease the burdens of families fighting cancer.

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.

 

Protecting your Health: Immunizations in Cancer Survivors

By Karen Effinger, MD, MS | Children’s Healthcare of Atlanta

 

Vaccines have become a hot topic with the introduction of the new COVID-19 immunizations. News cycles are filled with information about vaccination rates and the hope these vaccines promise. However, for many people, along with hope comes fear. While the COVID-19 vaccines are new, questions about immunizations are not. Survivors and their families often have questions during and after cancer therapy. It’s always important to talk to your oncologist or pediatrician if you have questions about vaccines.

Vaccines are generally safe. However, people with a weakened immune system can get sick from live virus vaccines. Guidelines say to avoid live virus vaccines during cancer therapy and for at least three months after chemotherapy and two years after a bone marrow transplant (BMT). If patients remain on immune suppression due to graft-versus-host disease or after a solid organ transplant, they typically are not given live vaccines.

Other non-live vaccines are safe, even for patients receiving cancer therapy. However, the immune system may not react the same and give lifelong protection if people are receiving cancer therapy. For this reason, we typically do not give vaccines to patients receiving cancer therapy except for the flu vaccine. Because cancer patients can become very sick from the flu and may respond to the vaccine, we recommend the flu vaccine every year even during treatment.

It is important for cancer survivors to catch-up on missed vaccines after they complete their therapy. Survivors should ask their oncologists when it is safe to restart immunizations (usually 3-6 months after chemotherapy.) For survivors who underwent a BMT, immunity from prior vaccines is typically lost. Therefore, vaccines need to be repeated. The BMT team gives families instructions about when it is safe to start this process based on national guidelines.

The approved COVID-19 vaccines have been found to be safe in adults and have been recommended by the American Society of Clinical Oncology. There is no preference for specific vaccines. However, survivors with an allergy to PEG-asparaginase should not receive the Pfizer or Moderna vaccines due to concerns for allergic reactions. The Johnson & Johnson vaccine does not contain PEG and should be safe. Patients should talk to their oncologist or pediatrician for more information.

While all vaccines are important, the HPV (human papillomavirus) vaccine is one of the few vaccines that prevents cancer. HPV is a virus associated cervical, anal, and oropharyngeal (mouth/throat) cancers and genital warts. Most people will be exposed to HPV at some point in their lives; however, many people will clear the virus without developing cancer. Recent studies have shown that childhood cancer survivors are at increased risk for developing cancer from HPV compared to those who did not have childhood cancer. For this reason, we strongly recommend that survivors receive this vaccine, and the Children’s Oncology Group includes HPV vaccination in their guidelines for survivorship care. Vaccination can start as early as nine years of age and is recommended through 26 years of age. If survivors have questions about any vaccinations, they should talk to their primary care provider or oncologist.

 

Karen Effinger, MD, MS

Dr. Effinger specializes in pediatric oncology survivorship, and in the late effects of childhood cancer and stem cell transplantation.

Madison Has a Purpose

Her voice is soulful, powerful, and angelic. When you hear Madison sing, you would never believe a voice like that could come out of a petite 21-year-old. You would also be surprised to know that five years ago, doctors found a tumor the size of a golf ball on her brain.

Her cancer fight started with a headache that came and went for three weeks. At the time, Madison was balancing life as a high school cheerleader and member of the golf team while maintaining a very high grade point average. She and her mother, Jennifer, were walking into a store when Madison stumbled and complained of a horrible headache.

“I asked if her headache was back,” Jennifer said. “She told me it had never completely gone away. I didn’t think much of it until she got sick the next morning.”

As a doctor of physical therapy, Jennifer knows more about the body than the average parent. The symptoms together had her worried, so she took Madison to the emergency room.

“I didn’t tell her because I didn’t want her to panic, but I felt like a brain tumor was a possibility and wanted to have them rule it out,” Jennifer recalled. “As we drove, her right arm started to go numb, and when we got there, her right leg became unusable.”

The emergency room staff rushed her to get a CT scan, and the doctor brought the news almost immediately. Madison had a tumor called anaplastic ependymoma on the left side of her brain. She was immediately flown by helicopter from Braselton to Children’s Healthcare of Atlanta. Because this type of tumor grows rapidly, Madison had surgery to remove it three days later.

An analysis of the tumor found it to be grade 3, meaning it is malignant and carries a 30% chance of recurrence. After healing from surgery, Madison had proton radiation for eight weeks. She will have to have regular MRIs of her brain and spinal cord for the rest of her life, but fortunately, her scans have been clear for five years.

“Madison has both physical and emotional scars,” Jennifer said. “Her treatment left her with PTSD, trauma, anxiety, and hallucinations caused by medication. Because of this, she wasn’t able to sleep alone until she got an emotional support dog named Toby. But our family believes we go through experiences such as this for a purpose, and Madison is finding hers.”

In fact, Madison founded a nonprofit called Purpose. Her goal is to comfort children in treatment by sending them a nightlight, a note of encouragement, and a stuffed dog that looks like her labradoodle. She is also finding purpose in her budding music career.

Madison has written 13 songs, including one entitled Superman, which is about being diagnosed with a brain tumor. While she sometimes finds this song disturbing to play because it brings back the trauma of her experience, she does want to tell her story to raise awareness and funds to help kids going through treatment.

“I won’t say God gave me cancer for a reason,” Madison said. “But I will say God brought me through cancer being mostly whole in a way that many children aren’t. I have a purpose.”

Madison is uniquely talented, and the world is starting to take notice. You can listen to her sing on Instagram. Big things are ahead for this amazing young lady.

X