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Childhood Cancer

Cap, Gown, and Cancer

CURE Crew offers Savannah area high school juniors and seniors the opportunity to support CURE through fundraising, volunteering, advocacy, and awareness of pediatric cancer. Every year, it is difficult to say goodbye to the graduates. This year is especially hard because three of our graduates are childhood cancer survivors themselves.

In 2008, 2-year-old Cora Garola was diagnosed with acute lymphoblastic leukemia. After several weeks of persistent ear infections and low-grade fevers, Cora’s pediatrician did bloodwork that revealed an elevated white blood cell count that ultimately led to the leukemia diagnosis. Although Cora’s diagnosis carries the highest percentage for success, her treatment called for three years of chemotherapy, high-dose steroids, quarterly spinal chemotherapy injections, and multiple bone marrow biopsies.

Cora lived out her preschool years on chemotherapy. Thankfully, she successfully completed treatment and has gone on to experience minimal late effects of the harsh treatments she endured as a young child. She barely remembers her cancer experience now.

Cora has been on CURE Crew for two years, but since her mother is the Vice President of CURE, she’s been volunteering for a long time. Her favorite experience has been at the Holiday Party.

“I love helping with other events, but the Holiday Party is special to me because we get to interact so closely with the children and families,” Cora shared. “Last year, my friends and I dressed up, and the kids loved it.”

Cora is graduating from Savannah Country Day School. She is going to Georgia Southern and majoring in psychology. She doesn’t have a career in mind quite yet but knows she has plenty of time to figure it out.

Mason Riegner was diagnosed with a soft tissue cancer called rhabdomyosarcoma at the tender age of four. The tumor was on the right side of his face. During his treatment, he entered foster care. While he didn’t understand enough to be anxious about the treatment, going through it alone made it a challenging experience. Unfortunately, Mason relapsed when he was eight years old and had to have his jawbone removed. He has been cancer-free since.

He has also gained a large family. When he was ten years old, his pediatrician adopted him. He has four brothers, three sisters, and one half-sister. Since his mother is a doctor, she has been pivotal in helping with his post-cancer treatment and the reconstruction of his face.

“With no jawbone, my face is off-centered,” said Mason. “I’ve had three surgeries to try to fix it over the years, including adding an artificial jawbone taken from my fibula.”

Despite all of his setbacks, Mason radiates positivity. He has enjoyed working with the CURE Crew and is very diligent about helping wherever needed. He will graduate in May from Calvary Day School and plans to attend Georgia Southern University, where he will study to become either a child life specialist or a physical therapist specializing in children’s therapy.

At the end of 2017, Lily Stucky had been sick and had some visible knots on her neck. When a rare dusting of snow fell in Savannah, Lily didn’t have the energy to go outside to play. Her mother thought she was faking to stay home from school. But a fever took her to the local emergency room, where doctors discovered Lily had leukemia.

She started chemotherapy right away and was plagued by “rare” side effects.  She lost weight on steroids, suffered from neuropathy in her feet and hands, and spent a month in intensive care because of brain swelling. Fortunately, Lily went into remission very early and stayed there, although the harsh side effects of treatment continued.

Lily has served on CURE Crew for two years and volunteers an hour a week at the CURE office through one of her classes. She will graduate from St. Vincent Academy and attend Georgia Southern University in the fall. When she was in treatment, healthcare workers had a significant impact on her. So, she plans on becoming a physician’s assistant.

“I like volunteering for CURE and knowing that I’m helping an organization that helped me,” Lily said.

There are so many graduates who have been through more than twelve years of school. Let’s congratulate these three and many others who have been forced to beat cancer before grabbing their diploma.

We Finally Have Hope

Easton has been fighting cancer for most of his twelve years. When he was 21 months old, he was constantly sick. His pediatrician noticed that his sickness was abnormal – he vomited more frequently in the mornings and while sitting in his car seat. A scan revealed a large tumor on Easton’s brain stem near the area that controls swallowing and nausea.

“The fact that Easton would get sick after being in his car seat made our pediatrician suspicious,” recalled his mother, Jill. “If the car seat hadn’t put pressure on the tumor, it might have taken longer to find.”

Easton had surgery to remove as much of the tumor as possible, followed by eight weeks of proton radiation in Jacksonville, Florida. His family was thrilled when a follow-up scan showed no presence of the tumor.

“We thought it was over,” said Jill. “We were told that if we had five years of clear scans, we wouldn’t have to worry about it again. Easton had four years of clear scans. But the cancer came back during the fifth year.”

Easton started treatment all over again in 2017 and experienced horrible side effects from the chemotherapy and radiation. Because the tumor grows around the area of the brain that controls swallowing, he has always had challenges eating. The awful mouth sores from his chemo caused him to be on a mostly liquid diet, and he had trouble maintaining weight.

In May 2022, Easton underwent a very risky surgery to try and remove the last part of the tumor. The surgery was unsuccessful. As he started recovering, Easton fell out of bed in the middle of the night. His parents rushed him to the emergency room, where doctors found that Easton’s brain was having a reaction to the glue that was used on his skull after surgery. He would need another risky brain surgery.

“This time, I felt like it was getting away from us and it was the beginning of the end,” said Jill. “He had been on some form of treatment for five years, and the tumor always found its way around it.”

But thanks to funding from CURE Childhood Cancer, Easton’s doctors have a new tool in their toolbox. CURE’s funds would pay for Easton’s tumor to be genetically mapped to see if his cancer involved any genetic mutations that could be targeted.

The genetic mapping revealed that a protein was feeding Easton’s tumor, causing it to grow. Doctors found an open clinical trial using a chemotherapy to inhibit this specific protein to prevent further tumor growth. Easton was immediately enrolled in the trial, and the results have been astounding. After four months, a scan showed that the inside of Easton’s tumor appeared to be dying. Three months later, the tumor is much smaller and is collapsing in on itself.

“The best news is that the tumor is dying. But also, he has no side effects. He can do the things a twelve-year-old should do while on this treatment,” shared Jill. “We’re still early in the process, but it has saved his life – at least at this point. I finally have hope for the first time in years. We are so encouraged and thankful to his doctors and to CURE for investing in precision medicine.”

Take the next step to support research that will help save kids with cancer… kids like Easton.

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10 Ways to Help Children Fighting Cancer During the Holidays

The holidays are a time of generosity and goodwill. As you can imagine, trying to celebrate the holidays while managing their fight against childhood cancer can be overwhelming. During this season of giving, there are simple ways you can make the season a little brighter for children fighting cancer and their families.

  1. Many families must travel long distances for treatment – often multiple times a week. To help defray some of the cost, CURE provides gas cards in $50 increments to places like QT, Racetrack, Kroger, and Walmart.
  1. Get your company, friends, neighbors, or church together to begin a project by assembling meal bags, snack bags, toiletry bags, or boredom buster bags. These are critical to families who have long or unexpected hospital stays. Click HERE for more information and examples. Our supplies of each vary, so please email Nicolaus Griffin at [email protected] before starting your project to find the greatest area of need.
  1. A recent study indicates that 20-25% of children experience food insecurity during their cancer treatment, and this insecurity can lead to poorer outcomes. Your company or organization can make a difference and provide a meal to children with cancer and their families through CURE’s Open Arms Meal Program. These meals help alleviate the stress and cost of meals for family members during hospital stays while meeting nutritional needs. Click HERE to learn more about sponsoring a meal.
  1. If you have a favorite restaurant and business, encourage them to host a percentage night during the holiday where a portion of the proceeds from your purchase will benefit CURE.

5. Start a Holiday Facebook Fundraiser. This is a great way to share our cause with your friends and family while raising essential funds to help. Click HERE to set yours up.

  1. Visit the CURE Store. We’ve got several products to fend off the cold, like our zip-up sweatshirt and the CURE / Love Your Melon beanie. By buying and wearing CURE products, you are helping us to conquer childhood cancer while sharing the mission at the same time. Shop Now!
  1. Host your own hot chocolate stand, chili cookoff, or other events in your neighborhood. The sky is the limit to what you can do. You can do it all yourself or use our handy DIY Fundraising site! Click HERE to get started.
  1. If you like to exercise, encourage the owner of your gym or fitness studio to host a “give-back holiday class” where the proceeds raised for the class go towards our mission.
  1. Your school or business can host an “ugly sweater fundraiser day” where students, teachers, or colleagues donate $1 or $5 to wear their sweaters that day. You could even make it a competition between grades or departments!
  1. Host a neighborhood movie night with classic holiday movies like Elf, It’s a Wonderful Life, or A Christmas Story. There’s no shortage of holiday music and movies to listen to and watch. Your friend’s ticket to attend is a donation to CURE.

Of course, these are just some of the things you can do for children with cancer and their families. Your only limit is your imagination! If you need any help or direction, please reach out – we would love to talk to you. Please email Kristen Rudio at [email protected].

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.

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.