Children Archives - Page 2 of 4 - CURE Childhood Cancer

Mark Myers In Childhood Cancer, Children, Precision Medicine, Research

It’s in the Genes

Ally has been through a lot in her eleven years. When she was two years old, she fell off a stool while playing with her brother. A large bruise appeared on her stomach almost immediately, and her parents took her to their local hospital. After blood work, they learned that Ally had B-cell acute lymphoblastic leukemia. “We were told that within days, she would have had uncontrollable bleeding without treatment,” said Ally’s mother, Amber. “Her body was working so hard to fight the cancer that her heart would have given out. It is hard to be glad for your child to fall, but that fall saved her life.”

Ally received her first dose of chemotherapy within 16 hours of diagnosis. Over the two years of treatment that followed, Ally struggled with almost every possible side effect. She suffered three life-threatening infections, temporarily lost the ability to walk, and struggled to rebuild her immune system after every round of chemo.

“We were given a bleak prospect of survival during her second fight with an infection,” shared Amber. “We prayed for a miracle and finally got one when her body started to respond to antibiotics.”

Her treatment finally ended on August 24, 2018, but her battle was far from over because her immune system did not recover as expected. Even years later, her doctors were concerned because she was still living with depleted immune function. In 2022, they decided to do genetic sequencing on Ally and her family to see if a disorder was causing her immune system deficiency. What the sequencing uncovered has lifelong implications for Ally and her family.

“My nephew was diagnosed with leukemia after Ally,” said Amber. “So I expected that if there was an inherited genetic trait linked to her cancer or her body’s response to treatment, it would be on my side. We found out that the opposite was true.”

Ally shares a genetic condition called Lynch syndrome with her father, Justin. This condition increases the risk of many kinds of cancer, including colon cancer, endometrial cancer, and other types. Knowing this will allow Justin and Ally to be monitored for early signs of cancer, giving treatment a greater chance of success. Ally sees a doctor with expertise in genetic conditions every year, and her parents are updated on new testing and protocols. Ally is doing great today. She is in her first year of middle school and enjoys competing in pageants. Her parents are grateful for her health and credit CURE’s investment in precision medicine as a big part of it.

“I have a friend who just went through breast cancer treatment, and her genetic testing cost $4,000 out of pocket,” Amber said. “The cost of repeated gene sequencing for us would have been staggering. But it didn’t cost us a dime because of CURE’s funding. We wouldn’t have known about the syndrome without it. With this knowledge, we can be prepared and should be able to detect any cancer in Ally or Justin early.”

Mark Myers In Childhood Cancer, Children, Precision Medicine, Research

We Finally Have Hope

young boy named Easton, a recipient of personalized cancer medicine

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.”

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Mark Myers In Children, Uncategorized

Pirate Tales and Prosthetics: Alaina’s Unstoppable Sense of Humor

It doesn’t take very much time spent with Alaina to realize that she is hilarious. She is a joker who radiates positivity and has a sunny disposition despite going through a very difficult year.

Alaina started having severe knee pain early in the summer. Within a few days, it hurt so bad that she couldn’t walk. Her parents took her to the emergency room, where soon she was diagnosed with a bone cancer called osteosarcoma. The treatment plan consisted of eight rounds of chemotherapy to shrink the tumor, followed by amputation, and then eight more rounds of chemo to prevent the cancer from returning.

The amputation Alaina had is called rotationplasty – a unique surgery where the knee is removed and the ankle is rotated and reattached to the thigh to serve as a knee. Once fitted with a prosthetic, this new “knee” offers the broadest range of motion. During the operation, surgeons removed most of her femur but were able to save the tibia, and most importantly, they removed the entire tumor.

Alaina’s mom, Mary, recently shared, “So far in our cancer journey, we have had hard times and good times. We have had good days and days where we have slept all day. Days we have met some amazing people and days when we have learned so much. We have laughed, we have cried, we have even asked why. But we know with God’s help that she will ring that bell!”

Alaina has such a positive attitude and is determined to walk as soon as possible. There are milestones of flexibility she has to reach to get her prosthetic. Although physical therapy is grueling, Alaina is working hard and is far ahead of schedule. She wants to get out of her wheelchair and learn to walk with a prosthetic.

In the meantime, she works on pranks to play on people. Her newest party trick is to bring her foot to her mouth – she says that surprises everyone the first time. She also loves showing people her scar and creates stories about how she got it. Sometimes, she will say she was the victim of a shark attack or that she’s a pirate. With Halloween coming up, none of her family or friends would be surprised to see her dress up like a pirate. But with her sunny demeanor, she will likely be the smiliest pirate to roam the seven seas!

Mark Myers In Childhood Cancer, Children, Named Funds

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.”

Mark Myers In Childhood Cancer, Children

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.

Mark Myers In Childhood Cancer Awareness Month, Children, Named Funds

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 25^th 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.”

Mark Myers In Childhood Cancer, Children

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!

Mark Myers In Children, Events, Uncategorized

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!

Mark Myers In Childhood Cancer, Children

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, contact David Stokes at [email protected].

Mark Myers In Childhood Cancer, Children, CURE Childhood Cancer

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.”