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Childhood Cancer

Raegan’s Playground

Raegan lived life on her own terms. She was sweet and spunky and loved unicorns. Her parents never knew how much of a fighter she was until she had to be.

She was thriving in kindergarten when she began suffering from minor illnesses that wouldn’t go away. After shuffling back and forth to appointments and different kinds of testing, Raegan was finally diagnosed with a pediatric brain tumor called DIPG.

“To say your life can change in the blink of an eye, four letters, DIPG, completely devastated our family,” recalled Raegan’s father, Marc. “We had never heard of this disease, and what we learned broke our hearts.”

Marc and his wife, Andrea, would soon learn that DIPG is a rare brain cancer for which there is no known cure. As if that wasn’t bad enough, Raegan had the worst possible genetic mutation and was given a prognosis of 6-9 months. Both Marc and Andrea work in the medical field and began scouring the internet for information and potential clinical trials.

“We shut down everything,” said Marc. “Our entire focus became about saving Raegan’s life.”

They found three clinical trials at St. Jude’s in Memphis, but by the time they arrived, two of them had closed and the third had little information available. So they packed up and came to Children’s Healthcare of Atlanta, where there were open trials that looked promising. There they met CURE.

“When we first got admitted to the Aflac Cancer Center, we were given one of the CURE tote bags,” said Andrea. “We were going through so much right then that I was very touched to feel like someone was thinking of us.”

At the same time they were facing this monumental battle, friends and fire departments around the country began to “Rally for Raegan” by posting pictures of support and contributing to a fund meant to help with Raegan’s medical expenses.

The first clinical trial worked well for seven months. But in January 2020, Raegan began to show symptoms of progression. When they came back to Atlanta for radiation, the COVID-19 pandemic hit, and the family was forced to stay in a hotel for twelve weeks. During this time, Raegan started a new clinical trial funded by CURE. She continued this treatment for five months until her tumor again showed progression.

“This all showed us how much of a fighter Raegan was,” said Marc. “She had already lived way beyond her diagnosis, and her doctor said, ‘I can tell you what we expect, but this is Raegan we’re talking about.’”

Sweet Raegan passed away at home during a tropical storm on November 8, 2020. She outlived her original diagnosis by nearly a year. And, oh how she lived.

“Raegan never stopped smiling and laughing,” said Marc. “She turned everything into her playground. The trials we went through weren’t failures because they bought us time to be with her, and every moment was precious.”

Marc and Andrea returned to Atlanta recently to pay it forward for the support they received during Raegan’s treatment.

They wanted to pay it forward to the organizations that cared for them during Raegan’s treatment. So they split the remaining funds between CURE, the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta, and the Winship Cancer Institute where she received radiation. Despite losing Raegan, they are dedicated to advancing research that will lead to cures for children with cancer.

After their experience, Andrea shared advice for parents of newly diagnosed children.

“When your child is diagnosed, it knocks the air out of you,” she said. “Once you catch your breath, start doing your own research. There may be other options out there and new treatments on the horizon. I have no regrets. The trials gave us 18 good months, much of which we wouldn’t have had. Keep fighting every day.”

Keeping up with Zoe

Last year, Courtney Thomas sat snuggling her two-year-old daughter, Zoe, in her lap. As she rubbed Zoe’s neck, she felt an odd swelling. As a pediatric nurse, she knew something was wrong.

“My radar was already up because she was fatigued and had been fighting an ear infection,” Courtney said. “A few days later, my husband noticed tiny bruises on her collar bone. We took her to her pediatrician the next day.”

Bloodwork confirmed what Courtney had begun to fear. Zoe had leukemia. Ironically, Zoe became a patient in the very hospital where Courtney works as a nurse. Her initial hospital stay lasted 19 days. While they were inpatient, the COVID-19 pandemic began to rage.

“Her whole treatment has been during the pandemic, and it adds a layer of worry,” said Courtney. “During one of her hospital stays, I was seven months pregnant. At the time, only one parent could stay with her. It’s tough to be that pregnant and alone while trying to entertain and care for a sick toddler. Being away from home so much has been difficult for her and her older brother, Arlen.”

Courtney has since delivered a healthy little boy, and Zoe is thrilled to be a big sister. Zoe is now in the maintenance portion of her treatment. She takes oral chemo pills nightly and goes in once a month for a chemo infusion. But Zoe’s treatments often make her immunocompromised, and with COVID still around, life has yet to return to normal.

“We are incredibly thankful for friends delivering meals and helping us around the house,” said Courtney. “But the isolation has been hard. We miss being able to go to church and visit with friends, and sometimes we feel isolated or even forgotten.”

While the pandemic has caused Courtney and her husband, T.J., to feel alone at times, they met a new friend in the hospital who has made a big difference. Courtney said:

“CURE has been here for us from the very beginning. As soon as we were diagnosed, we were given a CURE tote which included basic toiletries, which was appreciated since we weren’t admitted until after 8 pm. We also realized very quickly what an enormous blessing the Open Arms meals are. Having food served to us took away a great deal of stress because it was one less thing to worry about.”

“CURE has also been a huge support for us out of the hospital as well. The Quiet Heroes event came right after we had gotten back home from the hospital and was such an uplifting and encouraging experience for us both. I began to realize that we are not alone – we are now a part of a huge tribe of people, parents who love their children fiercely and will all fight for these kids and support one another together.”

Lastly, we have been so thankful for the counseling services CURE offers. CURE found a counseling group that has experience helping families going through childhood cancer and covered the cost of our counseling sessions. We have been able to take advantage of these services to be sure we are processing and handling the stress and change well and openly communicating about how we are feeling and know that how we are feeling is okay!”

All of this support has meant so much to them that, even though Zoe is still in treatment, the Thomas family has sponsored Open Arms meals for families of hospitalized kids. And as for Zoe, she is feeling much better and is back to singing, dancing, and trying to keep up with Arlen. It’s been a year since her diagnosis, and her treatment will continue until June 2022. While that seems like a long time, the entire family has learned that mixed in with the tough days will be some really good days.

Getting Khairi Back on the Field

Khairi loves baseball. He doesn’t even mind the bumps and bruises that result from playing hard. But when he was four years old, something odd happened. He got hit in the eye with a ball, and his mother, Michella, expected swelling immediately. But it didn’t come. In fact, it was days before the shiner appeared, and it lasted for nearly a month.

Unbeknownst to Michella, the reason Khairi’s eye didn’t swell was because his platelet count was dangerously low. Soon after that incident, he began to lose weight and got several unexplained fevers. The second time Michella had to leave work to get him from school, she took him to the hospital for evaluation.

“The nurse took a blood sample,” Michella recalled. “Then she came back and took another. After a few hours and two more samples, I knew something was wrong.”

Michella’s family has a history of lupus, so she imagined this might be the cause. But when a team of six doctors, including an oncologist, came into the room, her world was shattered.

“They told me Khairi had leukemia,” she said quietly. “It’s a lot to hear that your baby has cancer when you’re all by yourself. I had to leave the room so I wouldn’t break down in front of my four-year-old.”

Soon Khairi was whisked away for blood transfusions to get his white blood cell count down, followed by surgery to place a port for chemotherapy. In a few days they learned that Khairi had acute myeloid leukemia (AML). His plan included seven rounds of intense chemo, with a break to recover in between each round. But it took Khairi’s body a long time to recover every time, and he rarely got to stay at home more than a few days.

Fortunately, Khairi was cancer-free after his final treatment and got to ring the bell at the hospital, a special tradition at the end of treatment. Michella had been forced to take a leave of absence from work, so they went home to rebuild their lives and get back to normal. But normal was short-lived. After a routine follow-up visit months later, Khairi’s doctor called them with the devastating news that the cancer was back.

“I was so angry,” Michella said. “I went back to work and thought we were finished. I never had one thought that this would come back and had let my guard down. When I got that call, I was lost.”

With just five days left in his first grade school year and a few baseball games left in the season, Michella let Khairi enjoy his school awards ceremony. Then she took him to the hospital where he began the process of a bone marrow transplant. The transplant went well, but Khairi reacted to the pain medication and was rushed to intensive care.  After he recovered and went home, he had some issues with graft versus host disease – a condition where the new bone marrow cells attack the recipient. But Khairi is strong and is pushing through it all.

“He’s finally doing pretty well,” Michella said. “Khairi has a long way to go, but we keep working through it all for each other.”

Khairi takes eighteen medications a day and is isolated because his immune system is so compromised. His transplant was a year ago, and he hopes to be back on the diamond playing baseball again soon. And with everything he’s been through, he will definitely be the strongest kid on the field.

What Amaiyah Is Wishing For

Until early this year, Amaiyah had always led a very active life. She enjoyed hanging out with her three sisters, drawing, and praise-dancing at church. But in February she stopped acting like a typical seven-year-old. She slept more than normal, had little appetite, and got tired very quickly. Her mother took her to their pediatrician, who drew blood and diagnosed Amaiyah with mononucleosis. The doctor recommended that they schedule a follow-up visit in a month if she wasn’t feeling better. But Amaiyah continued to slow down and her symptoms only got worse. So in March, her parents took her straight to the emergency room.

When they arrived, Amaiyah’s blood sugar was at a level considered very dangerous, and she began going through an adrenal crisis. These symptoms indicated problems with the endocrine system, which is controlled by the pituitary gland. She was admitted to the hospital to stabilize her condition while doctors performed further testing.

The next day, the world began to shut down as COVID-19 took hold.

Imagine dealing with a sick child in the midst of a once-in-a-lifetime pandemic, with quarantines and social distancing. While Amaiyah’s family searched for answers, they worried that Amaiyah would be exposed to COVID-19 at the hospital and doctors’ offices they were visiting. They wondered how to keep her three sisters safe, as well.

After a week in the hospital, Amaiyah’s family got devastating news.

“The doctor finally came back and said she had a tumor pressing on her optic nerve,” said Amaiyah’s mother, Tequila. “The doctors informed us that she would need surgery in the near future, and they sent us home with medication to replace the function of the pituitary gland.”

Amaiyah’s surgery to remove the tumor took place on June 18. The tumor was wrapped around her pituitary gland, which regulates many of the body’s functions including blood sugar levels. A slice of the tumor was sent off to determine the type of cancer, and soon her family learned that she was fighting a malignant pure germinoma, a type of brain tumor that responds well to chemotherapy and radiation. After recovering from the surgery, Amaiyah had her port placed and began chemotherapy to shrink what remained of the tumor before moving on to radiation therapy.

“After her first chemo treatment, she did better than I expected,” said Tequila. “She was even able to eat afterward. But the chemo treatments have gotten progressively worse for her and recovery time takes longer.”

Knowing that the chemo would result in Amaiyah losing her hair, her mother, father, aunt, and even her grandmother shaved their heads in support. While the chemotherapy wasn’t easy, she knocked it out with only a few side effects. When she was with younger patients in the clinic, Amaiyah would even offer advice – telling them to remain still while receiving their treatment so the process would go faster.

Amaiyah’s next phase of treatment involved daily radiation at the Emory Proton Therapy Center in Atlanta. Proton therapy differs from standard radiation by delivering a beam of radiation that stops at the tumor instead of spreading beyond it like traditional radiation therapy, thereby reducing damage to healthy tissue. On the way to her appointments, she got a surprise when she saw herself on a CURE billboard.

“The first time we saw her face on the billboard, she almost missed it,” said Tequila. “We had to pull over and wait for the billboard to show her again. She was so excited to see herself up there!”

The proton therapy was a welcome relief from chemo and has been much easier to handle. Her energy level has been good, and Amaiyah’s family hopes to hear the words “No Evidence of Disease” very soon. Amaiyah is looking forward to being finished with treatment just in time to celebrate Christmas with her family. Being healthy again will be the best gift of all.

CURE is dedicated to conquering childhood cancer through funding targeted research while supporting patients and their families. Your gift of any amount will fund research that will allow kids like Amaiyah to live out her dreams.

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Brothers Fight Pediatric Cancer with Gold Bows

When Zach and Ryan Snipes lived in Savannah, they learned a little about CURE when they saw gold bows on mailboxes during September’s Childhood Cancer Awareness Month. A few years ago, they moved to Atlanta and, lo and behold, they saw gold bows again! Being inquisitive, Zach decided to learn a little more about CURE and the gold bows. What he discovered lit a fire to be a part of the program.

“Cancer has affected some of my relatives,” Zach explained. “It seems like there’s not a lot a kid my age can do to help. But when I saw how simple it would be to sell gold bows in my area and make a difference for kids fighting cancer, I volunteered to be a neighborhood captain.”

Zach is a senior at Milton High School and Ryan just started his sophomore year at Blessed Trinity. Together, they championed the gold bow program last year and sold 44 bows! This year, as the letter they sent to their community indicated, cancer got more personal.

This year, our challenge to Go Gold is more personal. Our grandfather was diagnosed with stage IV pancreatic cancer in May and a close family friend will begin his fight with colon cancer this week. And lastly, we fight for Jackson Bastow, a two-year-old family friend who was diagnosed with neuroblastoma just two weeks ago. Cancer didn’t stop during COVID-19, in fact, it has rocked our community.

Zach and Ryan distributed the flyer around their neighborhood with instructions on how to purchase. The bows cost $25 each and the brothers have sold 76 so far this year! That means they’ve raised $1900 to fight childhood cancer!

“We’ve always wanted to help out with cancer charities because of our family,” Zach said. “But this year we really wanted to go the extra mile for Jackson.”

CURE’s goal this year is to sell 7500 bows which would raise $187,000. To put that in perspective, that amount of money raised could:

  • help 187 families struggling with rent or mortgage payments during the pandemic
  • fund genetic tested for 37 children whose treatment has failed
  • completely fund promising research that could lead us closer to a cure

When this was explained to Zach, he sat back and said, “Wow, we are making a difference!”

Zach plans to study medicine next year in college. He isn’t sure he wants to be a doctor but loves science and wants to find a career where he can help people every day. Fortunately, Ryan is ready to step into the family business and continue their work as a gold bow captain when his brother leaves. These two really are making a difference and most assuredly will continue to do so.

To learn more about the Gold Bow Program, please visit curegoldbows.org.

Karalyn’s Fight

Karalyn loves to draw and play soccer. On August 23, 2018, she left for school a healthy 10-year-old. But when she got off the bus, her life changed dramatically.

“I was waiting for her and she came bounding to me saying, ‘Mama, I’ve got something on my neck’,” recalled her mother, Jennifer. “What she showed me was a lump the size of a walnut. I tried not to panic, but I knew we needed to get her to a doctor.”

Her pediatrician started an antibiotic. But Jennifer took Karalyn to the emergency room for another opinion. The hospital sent her home with a different antibiotic. Two days later, the lump was even more swollen, so they went back to the hospital where where a biopsy was performed. On September 11 the surgeon called her to relay devastating news: Karalyn had Hodgkin’s lymphoma. The cancer was on both sides of her neck and her sternum.

“Karalyn had two very close relatives who had recently die of cancer,” Jennifer said. “Because of that, her only association with cancer was death, and we didn’t want her thinking that way. So we told her she had lymphoma but didn’t tell that was cancer.”

The family celebrated her 11th birthday early so that she could enjoy it before chemotherapy started.

Jennifer said that Karalyn processes things better if she knows what to expect. If she knows what is about to happen, she can prepare herself and handle it better. But unfortunately, a cancer diagnosis can make an ordered life jumbled, leading to uncertainty and anxiety.

Karalyn’s oncologist said she appeared to be an open and shut case. She would have three rounds of chemotherapy and then another scan. At that point, a vast majority of children are cancer-free. But this was not the case for Karalyn. She endured two more rounds of chemo and was supposed to start 12 weeks of radiation. But she did not qualify for proton beam radiation and the side effects of general radiation to the chest cavity can be so severe that her medical team did not want to proceed. Her next scan indicated that the tumors were gone, and even though two of her lymph nodes were considered abnormal, Karalyn was in remission. One year and a day after she was diagnosed, Karalyn was cancer-free.

“Somewhere along the way, she figured out that lymphoma was cancer,” Jennifer said. “Her response was to say, ‘I know that God gave me cancer so that he could bring our family closer together.’”

Karalyn was so strong during her treatment that she only missed one soccer game the entire time. Although the happy girl who found the lump on her neck is back, the experience has changed her. She checks herself for lumps constantly and will run to her mother if she feels anything.

“There isn’t a day goes by that I don’t look at Karalyn and become filled with both pride and fear all at the same time,” said Jennifer. “So proud of the battle she fought and won, yet so fearful of what could be in her future.”

Karalyn is eight months cancer-free, but has had some troubling symptoms lately that led to new scans. While both mother and daughter are anxious, they continue to be hopeful that their fight is finished.

 

Click HERE to see the children participating in CURE’s Kids Conquer Cancer One Day at a Time.

 

 

 

Staying Put

Why one mom chose hospital over home

Hyrum is a fighter. He is three years old and has Downs syndrome, epilepsy, and was recently diagnosed with leukemia. But he doesn’t let anything bring him down. Hyrum is a perky ray of sunshine who loves his family, meeting people while cruising the hospital floor, and oh, how he loves to sing.

“Music is his balm,” said his mother, April. “When a song comes on, he lights up completely. He isn’t extremely verbal, so music is how he communicates.”

Diagnosed with leukemia in October, Hyrum reached remission quickly but is currently in a very difficult portion of his treatment called delayed intensification. This eight-week phase is important in preventing leukemia from returning later in his life. And while her medical team has told April there was a chance she and Hyrum could go home for a week in the middle, because of COVID-19, she asked if they could stay.

“Hyrum has had health complications most of his life and is no stranger to respiratory distress,” April explained. “Most people would be praying they could go home for a week. But his little body can’t tolerate any respiratory problems. I can’t risk his life to be social, so we asked to stay here.”

Hyrum’s home is a busy place with a large family of nine, and he loves every minute of it. When he got sick, his older sisters who dote on him created his #hopeforHyrum hashtag that got him some attention from one of his favorite actors, Dwayne Johnson. Of course, Hyrum knows him only as Maui in the movie Moana – which he loves because of the music. While he misses home, April knows this is the right place for him during the pandemic.

“Being on this floor is our safety bubble,” April said. “I’ve barely left the room in three weeks and we won’t leave the floor until we go home. I don’t want to go to the cafeteria and potentially bring germs back to him. So the boxed lunch deliveries from CURE are a godsend to us right now.”

Fortunately, her doctors agree that Hyrum should stay put. Since he isn’t the typical leukemia patient, they won’t treat him like one – especially with his risk of complications from COVID-19 being so high. And how is the isolation treating April?

“I put on a brave face because Hyrum needs to know that I’m steady for him,” April said. “But there is an isolation that doesn’t leave. There is a sense of security that this virus has taken away because it has removed the ability to have all of the emotional, spiritual, and physical support we need. Facetime is not the same as getting a hug or seeing my kids in person.”

Right now, Hyrum is handling the isolation fairly well. Hospitals have been a major part of his young life and he’s used to being there. His birthday is on June 1, and everyone’s goal is to finish this portion of his treatment and get him well enough that he can celebrate being four at home.

Coronavirus: What Childhood Cancer Parents Need to Know

By now, we’ve all become familiar with the signs and symptoms of COVID-19, as well as the steps the average person should take to help prevent the spread of the disease. Since the population that CURE serves is among the most vulnerable, we have compiled advice for parents who have children fighting cancer.

Many chemotherapy medications and targeted therapies used during a child’s cancer treatment can cause neutropenia, or depletion of the immune system’s white blood cells that fight infection. Because children with a weakened immune system may be unable to fight off the virus, parents should take steps to protect their children.

Experts recommend that everyone take common-sense precautions to prevent transmission of the new coronavirus. These precautions are nearly the same as the steps cancer parents take during flu season or when their child is neutropenic. Your medical team may offer other suggestions. As the situation is fluid, pay attention to emails and all other communications from your hospital.

If your child has prescription medications, try have a supply to last at least a couple of weeks and preferably a few months. The Food and Drug Administration is keeping track of medication shortages that may result from the epidemic. According to a recent statement, only one unspecified drug is now in short supply. No biological agents, such monoclonal antibodies or gene therapies, are made in China for the U.S. market, and there are no shortages. While it might be difficult due to insurance restrictions, try to get a 3-month supply or at the very least, renew your child’s prescriptions as soon as you are able.

 

Should I travel?

Most experts are encouraging cancer patients to stay off cruise ships and postpone air travel that isn’t directly related to their treatment. You should obviously follow the CDC’s travel recommendations – which are listed and updated here. When in doubt, ask your child’s oncologist.

What about school?

While the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta is not recommending children stay home from school or avoid school group activities at this time, they understand that you know best. If you choose to keep your child home from school, they will support you by providing medical documentation that may be required by your school system. The same situation should apply at your treating hospital. You can read their full recommendations here.

What if a family member develops symptoms? 

“Your family is important and you don’t want to avoid them, but if someone in your household gets sick, use some social distancing,” said Dr. Steve Pergam, infectious disease expert at the Fred Hutchinson Cancer Research Center. “Wear gloves, have them sleep in a different room if you can, make sure you wipe down areas with some sort of bleach wipes and keep washing your hands regularly. That’s really important.”

It’s also crucial not to bring a sick family member into your cancer treatment center.

“We need less people who are ill, not more,” Pergam said. “You don’t want someone going in with you even if they only have minor symptoms.”

Finally, he said it’s important to bring just one caregiver with you to treatment, not your entire family.

Should cancer patients (and survivors) avoid public transportation and events?

Pergam said people currently in treatment should avoid taking public buses or trains if at all possible. But he also acknowledged not every family can afford Lyft or Uber or some other rideshare service.

“Talk to your care team about what options exist to support you getting there without taking public transportation,” Pergam said. “Some hospital systems have services set up for patients.”

If you have no choice but to use the bus or a train, take precautions and distance yourself from others.

“Protect yourself,” Pergam said. “Sit in the back of the bus or other areas with less exposures and if you see someone who seems ill, coughing, move away.”

Pergam said cancer patients a few years out of treatment “should be OK,” but whenever possible should also avoid crowded buses or trains.

“If you have to get on a bus, practice distancing,” he said. “Or stay home if you can. It increases your risk when you are in public spaces.”

As for other public gathering places, Pergam again advised caution. Instead of going out to a movie, watch something at home instead, he said. Get take-out or delivery from your favorite restaurant instead of showing up in person. Or cook at home. Many grocery stores offer delivery service. You can even ask your pastor if they can set up a computer so you can go to “virtual church.”

“This doesn’t mean you have to be a hermit, just limit close interactions, particularly in public spaces,” he said.

Read the entire article here.

 

It is important during this time to stay in communication with your cancer team and keep up to date on new developments. Talk to them if you have questions or concerns, especially if you have new symptoms or were recently exposed to someone who is ill. While this could be a prolonged process, the best thing you can do is to monitor your child’s health and protect your family.

The following sources were used to compile this article. All are being updated frequently – bookmark them and refer to them as often as necessary.

Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta: COVID-19 and Oncology/Immunosuppression

Diane Maples, Fred Hutch Cancer Research Center:  Coronavirus: What Cancer Patients Need to Know 

Liz Highleyman, Cancer Health: What People With Cancer Need to Know About the New Coronavirus

Miram Falco, American Cancer Society: Common Questions About the New Coronavirus Outbreak

The Rush Brothers

While childhood cancers are rare, Tristen’s parents knew he had a better than average chance to be diagnosed with cancer. His mother, Angie, is a retinoblastoma survivor, and doctors had told her that there was a chance of passing the disease to her children.

Retinoblastoma is a cancer of the eye that most commonly effects young children. About 250 to 300 children in the United States are found to have retinoblastoma each year. Approximately 1/3 of those cases involve a specific genetic mutation and are considered hereditary. If one parent carries the mutated gene, each child has a 50 percent chance of inheriting that gene.

So when her first son was born, doctors immediately checked for the disease.

“Tristen was born early and spent about four weeks in the neonatal intensive care unit,” his father, Aaron said. “At three weeks, they found the tumor and started chemotherapy immediately.”

Their second son, Caison, was also born early and diagnosed with the same cancer at two days old. Because the cancer was detected early, both boys responded well to treatment. They haven’t had any new tumors in a long time, and they are watched closely by the doctors to ensure cancer doesn’t return.

“Angie’s treatment in the 80’s was much harsher than what the boys received,” Aaron explained. “She was older when they found the tumor, so it had also progressed further. They used intense radiation and cryotherapy which killed the cancer. But unfortunately, she wasn’t able to keep her eye.”

When their third son came along, they thought they had beat the odds. Just like his brothers, Carter was evaluated soon after his birth to see if he had any tumors. But unlike his brothers, doctors found no signs of cancer. But because of his genetics, Carter was monitored closely, and a tumor was found when he was six months old.

Like his brothers, the cancer was diagnosed so early that his prognosis is very good. Aaron says he hopes to use their story to raise awareness of childhood cancer.

“No one can imagine a family with three children who have cancer,” he said. “But knowing their genetics and their early diagnosis has been key in fighting the disease and preserving their vision.”

The Rush brothers underscore the connection between information and outcome. At CURE, we are laser-focused on improving outcomes for children fighting cancer. Because of their genetic makeup, the Rush’s medical team knew to check for cancer at its earliest stages.

Most childhood cancers are the result of genetic changes that happen early in the child’s life, sometimes even before birth. The typical childhood cancer diagnosis comes as a result of symptoms such as pain, swelling, or bruising, and almost always takes longer to discover than it did in the case of the Rush brothers. But if doctors had access to genetic information in the early stages, treatment paths may change and outcomes could improve.

“The way that we treat most childhood cancers now is by brute force,” explained Dr. Daniel Wechsler, Director of Pediatric Oncology at Children’s Healthcare of Atlanta. “We use drugs that have significant side effects. If we knew what particular drugs a child’s tumor was going to be responsive to, then we could use fewer drugs and get better outcomes.”

That is the premise of CURE’s Precision Medicine Initiative. By analyzing a child’s DNA, doctors are often able to discover genetic markers that help them tailor the perfect treatment to that child. This type of discovery is standard protocol for many adult cancers. But currently, only children with relapsed or high-risk tumors have their genes sequenced. Often, this is too late.

We believe that all children should receive the very best treatments available, and that begins by arming doctors with information. To that end, our goal is to make genetic discovery and genetic sequencing the first step in every child’s treatment.

Take the next step to support research that will help save kids with cancer… kids like Tristen, Caison, and Carter.

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Timothy’s Road to Health

Timothy is the kind of boy who would never let a little stomachache slow him down. A sports enthusiast, you could often find him with a ball in his hand – usually a baseball or football. But toward the end of 2017, a persistent stomach pain started to take its toll. As the pain’s severity increased, his mother, Sloan, began looking for answers.

“We began at our pediatrician and then progressed to a pediatric gastroenterologist,” Sloan recalled. “After about three months of trying things that didn’t help, the doctor ordered a sonogram.”

The sonogram revealed a tumor near his stomach and liver. Timothy was immediately prepped for a biopsy where the tumor was identified as neuroblastoma – a childhood cancer that develops from immature nerve cells found in several areas of the body. The diagnosis was a surprise because Timothy was eleven years old, and neuroblastoma most commonly affects children five or younger.

After the biopsy confirmed the results, Timothy had another surgery to add his port and started his first round of rigorous chemotherapy that was to last five months. While the treatment did wonders to shrink the tumor, it also ravaged his body at the same time.

“Timothy went from a healthy boy to a state of malnourishment,” Sloan said. “He was so sick that he got down to 48 pounds, and we had to have a g-tube placed to give him nutrition.”

The next phase of treatment was removal surgery. The chemo had worked to shrink the tumor, and during a seven-hour operation, doctors took out all they could. Because the tumor was wrapped around two major arteries, the surgeon was unable to remove it completely. Once he recovered, Timothy had a stem cell transplant followed by radiation, and then immunotherapy, which is a type of cancer treatment that boosts the body’s natural defenses to fight cancer.

The immunotherapy was particularly harsh on Timothy, and he spent weeks at a time in the pediatric intensive care unit. Through all of the difficult treatments, separation from friends and family, and time away from home, he never complained. Despite missing many days of school, he worked hard and was able to finish the sixth grade with all A’s!

Timothy has been declared No Evidence of Disease (or NED) for ten months. He isn’t quite finished with his treatment. In order to prevent a relapse, he is enrolled in a clinical trial and takes three pills twice daily. He will continue that regimen for another year and a half.

“All-in-all, Timothy is doing great,” said Sloan. “His weight is up to 80 pounds, and he’s looking forward to playing baseball again in the spring. We aren’t sure about football, but we’ll decide on that later. For now, we are just thrilled that he’s healthy again.”

Timothy’s family has expressed gratitude to CURE for helping them deal with the challenges of treatment. The hospital where he received the majority of his treatment was 80 miles from his home, and his stem cell transplant was 300 miles away. CURE was able to help ease the financial burdens of the travel through our family emergency fund – part of which helps with gas and other travel-related expenses.

“We want to make sure the high cost of transporting a child to treatment doesn’t take a toll on a family’s finances,” said Lisa Branch, CURE’s Director of Patient and Family Services.  “CURE is happy to be able to help families like Timothy’s in this way, because a long stretch of highway should never be a barrier to a child’s health.”

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