Category

Childhood Cancer

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

Three Brothers Winning the Fight Thanks to Early Diagnosis

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.

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.”

A Legacy of Compassion

If you waved at Michael Mugrage, it’s doubtful you would have received a wave in return. More than likely, you’d have gotten a warm smile and one of his signature shakas – a hand gesture residents of Hawaii use to convey the Aloha spirit. It is a sign of friendship, compassion, and respect. Michael was born in Hawaii and spent his first twelve years there before moving to Bluffton, South Carolina.

In Bluffton, Michael grew to become a typical high school teenager. He liked playing Xbox, loved football (he’s a huge fan of Joe Montana and the San Francisco 49ers), was looking forward to getting his driver’s license, and was taking classes to pursue a future career in law enforcement. But he was getting thin, and he started complaining of severe leg pain, abdominal pain, and headaches. A doctor said these were just growing pains, but just days later, Michael was in urgent care with a collapsed lung.

Two hospital transfers via ambulance in a matter of hours and several tests later, he received devastating news. On Halloween 2017, Michael and his mother, Jessica, were told that he most likely had cancer. He had a large mass and would need surgery for a biopsy. The result came back as high-risk (stage 4) alveolar rhabdomyosarcoma (ARMS), an aggressive soft tissue cancer. Although they were fairly new to Bluffton at the time of the devastating diagnosis, their neighbors rallied to their side. The high school principal, teachers, classmates, and several police officers stopped in to visit. Early on, Captain Joe Babkiewicz of the Bluffton Police Department and Michael formed a strong friendship based on their passion for law enforcement and football. Recognizing his qualities of courage, strength, and compassion, Captain Babkiewicz made Michael an honorary Bluffton police officer and designated him a “True Hero.”

Michael endured months of high-intensity chemotherapy treatments, surgery to remove the mass, and the lifetime amount of radiation to his lung and abdomen. For a while, the treatment seemed to work, and Michael was counting down his remaining treatments with hopes of remission and returning to high school. Unfortunately, nine months into treatment, the cancer returned with a vengeance and Michael was given days to live.

Proving his status as a hero, Michael accepted his fate and asked to enroll in a trial to help other children, even after being told it would not help him. He was scheduled for an appointment, but his health deteriorated quickly, leaving him unable to travel for the trial. Michael passed away on August 28, 2018 at the age of 16.

When Michael knew his time on earth was coming to an end, he again showed the compassion for which he had been commended. He told his friends and family that his desire was to see an end to pediatric cancer so that children diagnosed after him would have hope of a long life. In response, his mother and brother, Matthew, have created Michael’s Fund 4 a CURE, a new Named Fund of CURE Childhood Cancer. The primary purpose of the fund is to invest in precision medicine – which brings personalized medicine to children with cancer. It is his family’s desire that Michael’s legacy of compassion will lead to a day of new hope for children diagnosed with cancer.

Click the button below to visit the Named Fund honoring Michael.

Climb to a Million

Although it was one of the hottest days of the year, the 4th annual Lendmark Climb to a Million went off without a hitch. Even the heat didn’t deter hundreds of employees, friends, and family members from walking, running, and climbing at the Oconee County High School track.

The event was inspired by Chip Madren, and was held on the 9th anniversary of his brain tumor diagnosis. Bobby Aiken, CEO of Lendmark Financial, has been friends with Chip’s father since childhood and created the Climb to a Million as a way to combine his love of stadium running with a fundraiser that would engaging his company’s employees, partners, and vendors in the fight against childhood cancer.

Events, fundraisers, and smaller climbs were held throughout the country by Lendmark employees. Through their combined efforts, the Climb to a Million raised an amazing $552,000 to advance CURE’s Precision Medicine Initiative. This pushes the total amount to $1.8 million and helps CURE move the needle in bringing advanced treatment options to children fighting cancer.

“We are inspired by Lendmark and their incredible commitment to make a difference in the lives of children with cancer,” said CURE’s Executive Director, Kristin Connor. “They saw a problem and set out to fix it in a creative and fun way. Their energy and passion is contagious!”

Read more about Lendmark on their website

Lendmark CEO, Bobby Aiken and Chip Madren before the Climb

A Return to School

When your child receives a diagnosis of cancer, a return to school can happen at any time during the year and can become either a welcome return to normalcy or a cause of stress. Both responses are normal. Some children welcome going back to school. For them it may symbolize that they have a future and they are finally “normal” again. Other children may struggle with anxiety. They may be concerned about whether others will accept them, tease them, or ask tough questions.

In order to prepare for this return to school, families should:

PLAN AHEAD

Far in advance, communicate with your child’s care team about possible time frames for a return to the classroom. Find out what they typically recommend to aid with school re-entry. For example, they may suggest your child return to school for only half-days at first until he builds up his strength.

DISCUSS SCHOOL RE-ENTRY WITH YOUR CHILD’S SCHOOL

Once you have a date and a strong understanding of your child’s needs, reach out to the principal of your child’s school. Ask to speak to your child’s teachers, the school nurse, and/or the school counselor/psychologist, and anyone else involved in helping your child reestablish a school routine. Be sure they understand your child’s cancer experience and treatment, discuss your child’s physical, emotional and academic limitations and discuss how the  school  will educate other children in your child’s class/grade to prepare them for your child’s return.

PLAN A SCHOOL VISIT

Depending on the length of time your child has been absent and the physical changes she has experienced, it may be helpful to plan a visit to the classroom before your child returns to school. After the teachers/counselors have prepared students for your child’s return, consider whether it would be helpful to visit and read a book about cancer, play a game and/or bring a treat for students in your child’s classroom.

MAKE SURE THE SCHOOL IS PREPARED

Provide the school with your child’s medications along with instructions for their administration. Include medications your child must avoid. Give the school a list of potential problems to watch for and when to contact you. Make sure the school has current and updated emergency contact information and instructions. Request a 504 plan for special accommodations if appropriate. And finally, ask that the school treat your child as normally as possible except for areas of special need.

PREPARE YOURSELF FOR YOUR CHILD’S RETURN TO SCHOOL

It is important to recognize that your child’s return to school may be as hard, if not harder, on you than it is on your child. Worry about infections, falling behind in school work and being teased by other children can all cause anxiety in parents. If you are having a hard time managing your emotions, if you are feeling overwhelmed and irritable, and/or if you are crying often, you may benefit from speaking with a counselor about ways to improve and manage your anxiety and fears.

PREPARE YOUR CHILD FOR QUESTIONS FROM OTHER STUDENTS

Children will manage better if they know what to expect. Let them know that other children may not know much about cancer and may ask questions like “can I catch cancer from you?” Coach your child on how he would like to answer questions. Also, let your child know that he does not have to answer every question and can refer questions to the teacher.

MONITOR YOUR CHILD’S ACADEMIC CAPABILITES

If your child is struggling to catch up or keep up at school upon returning, quickly request a meeting with the teacher to discuss the appropriateness of a 504 or Individual Educational Plan (IEP). Children can exhibit a lack of focus, a decrease in the ability to remember and difficulty completing tasks after cancer treatment. They may struggle in social situations with friends and/or develop learning disabilities. A 504 or IEP plan is negotiated by parents and teachers to set appropriate educational goals for a child with physical, emotional, or learning struggles. Such a plan can make school more successful for your child.

 

Remember that returning to school, although potentially hard for both you and your child, is a step towards recovery. It is a chance for your child to return to a normal life and may help to reestablish a sense of hope for everyone.

 

By Carleen Newsome, LPC, CPCS, ACS

 

Here Comes Braylynn

If you hear a squeaking sound, it might be Braylynn headed your way! Thanks to her favorite pair of shoes, her nurses all know when she’s coming and get ready with arms wide open.

The fact is, sweet Braylynn has spent way too much time in the hospital. Since her diagnosis in 2017, she has learned to walk in the hospital, met her baby brother in the hospital, and grown up around needles, tubes, and nurses. She will turn two in August and has spent an unbelievable 245 days in the hospital.

Once she learned to walk, seeing her toddle up and down the hospital halls became a common sight.

It started with a runny nose and fever that wouldn’t go away. Her mother took her to the pediatrician in Hazelhurst. He felt swollen lymph nodes at the base of her skull and knew immediately something was very wrong. His experience told him it was leukemia, and a blood test confirmed it.

“After he told me she had cancer, I couldn’t get my mom or husband on the phone,” said Braylynn’s mother, Drew. “I panicked because we don’t have any cancer in my family history, and I didn’t even know kids could get cancer. All I could think was that I might lose my baby.”

As her family learned of the diagnosis and began arriving at the hospital, Drew was able to collect herself for the long ride to Savannah where Braylynn would be treated. There they would learn that Braylynn had infantile leukemia with a mutation that made it high risk. In fact, it was the hospital’s first case in seven years.

Braylynn began treatment right away. She reached remission quickly, and fortunately, there was an open clinical trial designed specifically for her cancer’s mutation. She began the trial drug, and after just four rounds the trial chemo worked to reduce the effect of the mutation.

The side effects were brutal though. Braylynn had severe mouth sores and a diaper rash bad enough that the hospital’s burn unit evaluated her and brought a cream to sooth the rash. Because she was so young, the chemo was always hard on her, which is why she spent so many days inpatient. She is finished with that now and takes an oral chemo that doesn’t seem to bother her.

Since she is at home more often, Braylynn can enjoy being outside, her dogs, and her little brother, Luke.

“Luke is her world,” Drew said. “He was born while she was in treatment and every day she was there, he was too because I wouldn’t leave either one of them. It’s hard to keep a toddler happy while they are confined to a room. That’s why she spent so much time roaming the halls with the nurses. She loves those nurses.”

Due to her treatment, Braylynn’s speech is somewhat delayed but she is catching up now. Drew doesn’t know exactly when Braylynn’s treatment will end, but she is confident Braylynn will keep running and squeaking until she can say goodbye to the hospital for good.

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