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When Schuylar was a junior in high school, she had a health scare that threatened to derail her future. But this recent college graduate wouldn’t let anything stand in her way, including a fight with cancer.

One night, Schuylar turned her head and her mother noticed a bump on her neck. Since it didn’t hurt, they didn’t think much of it until later in the year she began to feel sluggish and fatigued. Her doctor thought it might be her wisdom teeth coming in, but her mother felt like something else was to blame and pushed for more tests. She was right. A biopsy revealed that Schuylar had Hodgkin’s lymphoma, and the bump on her neck was a swollen lymph node.

“I remember the hospital elevator doors opened and I saw the sign that said, Aflac Cancer and Blood Disorder Center,” Schuylar recalled. “I turned to my mom and said, ‘why are we here?’ I cried when they told me.”

Schuylar began the standard protocol which consisted of four rounds of chemotherapy and lasted over three months. She planned to shave her head, but when she went to the beautician, all of her hair fell out in the sink.

“It didn’t really settle in that I had cancer until I lost my hair,” she said. “I was just going through the motions until I was bald. I know three months of treatment isn’t a long time, but it felt like forever to me. I was assigned a homebound teacher for school and I really pushed myself too hard because I didn’t want to feel weak or incapable.”

Schuylar had bouts with nausea and bone pain during her treatment. She also got to go to Camp Sunshine, which was a wonderful break where she could be with people who understood what was going on with her.

Her treatment ended early in her senior year and her hair started to come back. Because she missed so many days, her grades suffered. But everyone at Luella High in Locust Grove worked with her and she got back on track. Schuylar was adamant about graduating with her class in 2014 – and she did!

“I had some tough moments after treatment was over,” she said. “My school’s principal, Harry Kustik, was a great help to me and my family during the whole thing. He asked me to come and share my story with his soccer team and it really helped me to talk to those girls about overcoming cancer.”

After high school, Schuylar began college at Georgia Southern University, but returned home too attend college in the local area. While at home, Schuylar and her mother connected with newly diagnosed patients as a way to encourage them. She has continued to express a desire to share her story and serve as a visual of hope for families in the fight against cancer.

Her cancer experience pushed her to work toward a degree in healthcare. She began in nursing, but decided that wasn’t the path for her and attained a Bachelor of Health Science from Clayton State University. Two internships and several volunteer hours helped her to decide she would like to work at a place like the CDC where she can review and implement public health programs.

Schuylar is nearly seven years cancer-free and knows that while it was difficult, her cancer journey also helped her in many ways.

“My cancer experience made me stronger and set my focus,” she said. “I want to encourage people who are going through treatment to not let a cancer diagnosis hold them back. On the other hand, sitting down to take a breath doesn’t make you weak. I should have rested more. I got caught up in wanting to be the old me all the time. But after it was over, I came out of it as a better me!”

When Carter was 18 months old, he began to get skinnier. Because he was very active and the time was right for him to start losing baby fat, no one thought much of it. But as he grew taller, his mother, Erin, became concerned. No matter how much he ate, he still lost weight.

“He was eating like a horse and you could see his ribs,” she recalled. “About a month after his well check-up, I stopped in at the pediatrician’s office and asked them to weigh him. He had lost a pound in that month!”

The doctor shared her concern. Carter weighed 18 pounds and a healthy child his age should weigh around 25. Over the next few months Carter would visit several specialists and have tests for disorders such as celiac disease and cystic fibrosis. He began to lose strength and his typically active pace began to slow dramatically. When test after test came back negative, he was admitted to the hospital where an endocrinologist discovered he had diencephalic syndrome – a disorder that speeds up the metabolism.

“What we didn’t know was that the syndrome they found is usually caused by a tumor,” said Erin. “They did a CT scan and sat us down to tell us he had brain tumor. Being told that your child has a tumor was the scariest thing I’ve ever heard.”

Carter underwent a biopsy that revealed it to be a pilocytic astrocytoma – a slow-growing, benign tumor. His doctors did not feel it was worth the risk of brain surgery to try to remove it, so they decided to monitor it instead. But what was supposed to be a slow-growing tumor grew larger in just a few months. So a surgery was scheduled to remove as much as possible.

“The surgery lasted twelve hours,” Erin said. “It was excruciating. Other parents came and went from the waiting room all day while we sat there until they finally came out and told us that the surgery was finished.”

The surgeon said he was happy with the results. He was able to remove roughly 40% of the tumor and within a week, Carter was walking, smiling, and playing at home. But his battle was far from over. A follow-up MRI showed that the tumor had spread down his spine.

“That was a defeating moment,” said Erin. “He’d been through so much already and this type of tumor isn’t supposed to grow or spread.”

Carter stayed at home for a month to let his body heal and then began chemotherapy which made him very sick. After seven rounds, he developed a brain bleed that forced surgeons to put in a shunt to relieve pressure should it happen again. Since that time, his parents have taken him from his home in Savannah to Atlanta and Washington DC for treatment. He has been on clinical trials, and currently receives a combination of three chemo drugs every week.

“Stability is the best-case scenario,” explained Erin. “We desperately wanted it to shrink and were disappointed time after time. At this point his tumor has been stable for almost nine months. Now that we’ve adjusted our expectations, we are happy with that result!”

And Carter is finally doing well. He is back to being very active and has even gained weight! He loves Mickey Mouse and following his older brother, Cade, all over the place. His family feels that it’s important to share his cancer journey and when he slows down, Carter will almost always smile for the camera.

“We want to share Carter’s journey for two reasons,” said Erin. “We want others to know the realities of what childhood cancer families deal with. We also hope that Carter’s joy throughout his treatment will brighten someone’s day.”

A fall that never seemed to get better started seven-year-old Landon off on a journey that took an unexpected turn.

“He just slipped and fell,” recalled his mother, Jessica. “It didn’t seem like much. But he hurt his back and it never got better. When he refused to go up stairs and was screaming in pain, we took him to get an X-ray.”

The X-ray didn’t reveal any broken bones, but later an MRI would show that Landon had leukemia. That was two years ago and because Landon would be immunocompromised during his treatment, his family had to learn all about handwashing, surface cleaning, and social distancing.

Some of the basic recommendations to keep leukemia patients safe from germs include:

• frequent dusting and vacuuming
• weekly cleaning of kitchen and bathroom sinks, tubs, shower area, and toilets with a cleaner that kills mildew.
• All kitchen appliances, including the inside of the refrigerator and counter tops, should be thoroughly cleaned with a commercial cleaning soap or solution.
• Air conditioning filters should be removed and cleaned or replaced monthly.

“We are constantly cleaning our house,” Jessica explained. “Landon’s treatment is three years – and he is immunocompromised that entire time!”

Landon reached remission in thirty days and his treatment has gone according to plan. The cold and flu season usually puts him on a health rollercoaster. He has been in admitted to the hospital a few times in the spring seasons and typically rebounds by summer. He was enjoying soccer this year and was very disappointed that the COVID-19 pandemic forced its cancellation, but he understands that he needs to stay well.

“Landon is why I social distance,” said Jessica. “Because of his cancer, he’s been forced to be in quarantine and at times he has had to stay away from friends and family. If he can do it for three years, we can all do it for a few weeks.”

The COVID-19 pandemic has forced all of us to step back and make hard choices. But what would you do if your child was in treatment for cancer and you worked in a hospital that was starting to admit patients suffering from the virus? That’s the decision the Walker family had to make.

Payton, or Pjo, as he likes to be called, is a whirlwind of action and fun. He could often be found climbing up a tree in his yard until a cancer diagnosis slowed him down. In April 2019, seven-year-old Pjo was diagnosed with neuroblastoma, a childhood cancer of the nervous system. He started aggressive chemotherapy right away and had surgery to remove the large mass. His treatment path has been difficult, but he has maintained a positive attitude through the whole thing.

Pjo was all set to be the face of CURE Madness before the NCAA tournament was cancelled. Now he is the face of the balancing act between cancer treatment and COVID-19. His father, Payton, is a plumber, and his current job site is at Grady Hospital. Because Pjo is immunocompromised and completely vulnerable to the virus, his family was forced to make a very hard choice.

“This was a real reality check,” said Pjo’s mother, Deidra. “We were both really hoping they would shut the job site down, but they didn’t. We are at a place where we cannot take any chances. So Payton is taking a layoff.”

Even in the best of times, many families struggle financially during childhood cancer treatment. Between increased medical expenses, frequent travel costs, and loss of time at work to be a caregiver, finances can quickly become strained. The pandemic has forced a new, even tougher reality for some parents of children fighting cancer. During treatment, cancer patients are so vulnerable that they would have no way to fight off such a strong virus, and difficult decisions have to be made. Decisions of life over livelihood.

But Deidra doesn’t doubt their decision one bit.

“Pjo’s body has been through so much in the past a year,” explained Deirda. “It would be irresponsible of us to continue to expose him. If everyone does their part and stays home, maybe we can stop this virus and Payton can go back to work.”

Pjo is starting a new form of treatment called immunotherapy that hopefully will finish off his cancer for good. He will be severely immunocompromised for months to come, but his whole family will do whatever it takes to keep him safe. Their difficult decision proves that.

Fiona has been swimming for a very long time. She would be the first to tell you that she isn’t the fastest swimmer in the pool. But she just might be the one with the most heart.

“Swimming is a big part of who I am,” Fiona said. “It’s always been my favorite sport, and I’ve made a lot of friends through neighborhood swim teams and now high school.”

Another big part of Fiona’s persona was forged as a cancer survivor. At the tender age of two, Fiona had a sickness that wouldn’t go away. Her parents took her to her pediatrician several times until a blood test confirmed that she had leukemia. She spent the next two years in treatment. Since she was so young, she has very few memories of her cancer journey.

“We have a few pictures of me in treatment,” she explained. “Since I don’t really remember it, it feels weird to think that baldness and needles were a significant part of my childhood.”

Fiona reached remission quickly and hasn’t looked back. She has an annual appointment at the survivor’s clinic, and due to the toxicity of the treatment that healed her, she has to have an echocardiogram every other year to monitor her heart function.

As she has gotten older, Fiona has developed a passion for giving back to good causes. She particularly wanted to do something on her own that would help other kids forced to fight cancer. Early last year, an idea began germinating in her head to use swimming to raise money for CURE. With her family’s support, she took the idea to her coach at Lakeside High School who was immediately on board.

Her idea was very simply to get the team together to swim laps while music played in the background. Some of her teammates asked their friends and family for a pledge per lap, but most of the students collected money for the cause beforehand and brought it in. By the time they were out of the pool and toweling off, Fiona and her friends had raised almost $4000 to fight cancer.

“It was challenging to organize at times,” Fiona admitted. “But I’m super-excited about the turnout, the support we got from neighbors and the school, and the amount of money we raised. It was a very rewarding experience.”

Fiona is already planning on doing it again next year. She’s also in the early stages of planning for a career. As a high school junior, she has plenty of time to decide. But right now, she is leaning toward studying to become a child life specialist.

“Their job is so special,” she said. “I really want to help children cope with their hospital experience since others did that for me.”

Whatever she decides to do, she is sure to be successful if she carries the same passion and dedication she’s shown in the pool into her career.

 

 

 

Jessie had been sick for weeks and had been taken to visit her doctor several times. After the pediatrician couldn’t identify the problem, he ordered a blood test. But the machine couldn’t read the results because her white blood cell counts were too high to register. That earned Jessie a quick trip to the emergency room where she was diagnosed with leukemia.

Because she was 11 years old, her disease was considered high risk from the start. She began months of chemo that put her in remission almost immediately. At that time, another test revealed that she would almost certainly relapse at some point in her life because of a specific chromosome for which she tested positive. This news forced her to undergo the rigors of a bone marrow transplant.

“Our insurance company forced us to go to Minnesota for the transplant,” Jessie recalled. “My donor was someone unrelated to me who matched my bone marrow, but not my blood type. So I went north with O+ blood and came back to Georgia with A+!”

Jessie has had no evidence of disease since her treatment ended.

♥

Twelve days after Jessie’s diagnosis, another family was hearing the same dreaded words, “your child has cancer.”

♥

Joe was an active 13-year-old who had been slowed down by knee pain. When the pain became intolerable, he was taken to the doctor who suspected growing pains to be the culprit. Rest and ice did nothing to soothe him, and a subsequent trip the hospital revealed a tumor in his knee.

A biopsy showed the tumor to be Ewing sarcoma, a rare type of childhood cancer that occurs in bones or in the soft tissue around the bones. Joe’s family had treatment decisions to make, and rather than amputation, they chose to undergo a limb salvage procedure which entailed removing the disease and reconstructing the knee. While it was successful, the incision became infected and left little room for keeping his leg.

“I remember the doctor came in with bad news,” Joe said. “He told my parents, ‘I can save his leg, or I can save his life.’ In the end, we didn’t have much of a choice.”

Joe had his leg amputated above the knee. He made a full recovery and although treatment was very difficult, he has remained cancer-free since.

♥

Joe and Jessie were treated at the same hospital and at the same time but somehow didn’t meet during their treatment. They first met at summer camp a few years later as teenagers. Both enjoy sports and outdoor activities, so they always seemed to run into each other on the fields or shooting range. They wouldn’t become more than passing acquaintances until much later, however.

Jessie arrived on the University of West Georgia campus knowing a few people from high school and one friend from their camp. That friend reconnected her to Joe, who happened to be a sophomore at UWG. They became friends in college, but romance was yet to bloom. Jessie graduated in 2005 and moved to Newnan to begin a career. Five years later, a surprise Facebook message changed her life.

“I hadn’t seen Joe in years, but he must have noticed that I’d moved nearby,” Jessie said. “He messaged me and said, ‘what are you doing in Newnan?’”

As fate would have it, Joe lived nearby. They agreed to get together and soon were dating. After an 18-month courtship, cancer survivors Joe and Jessie Tallant walked down the aisle as man and wife. They will celebrate their tenth anniversary in August.

Although both have been cancer-free for many years, they haven’t been free from the cancer treatment they received. The radiation and chemotherapy that saved their lives left them both with fertility challenges to overcome. After going through an embryo adoption process, Jessie gave birth to twins, Buck and Ellie in 2017. It’s a busy, hectic life, but Jessie wouldn’t change it for the world.

“Cancer isn’t fair and has left a footprint on everyone involved. But if it wasn’t for cancer, I wouldn’t have met Joe or had the twins,” Jessie added. “This isn’t the story either of us would have written for our lives… but it’s turning out to be a good one.”

Building a legacy is a painstaking process that takes dedication, consistency, and time to accomplish. If a person meets an untimely death, that process is interrupted… or in the case of Sam Robb, it is picked up and carried by his family. By creating The Sam Robb Fund at CURE, the Robb family has ensured that Sam’s spirit and determination live on. Thanks to their tireless efforts, the Sam Robb Fund recently surpassed $1 million raised to fight childhood cancer in Sam’s memory. Although they have done the heavy lifting, the family credits many people for what has been accomplished.

“We are blessed with remarkable friends who consistently turn out and support the events enabling us to keep Sam’s spirit alive… and never forgotten,” said Sam’s father (also named Sam.) “We hope our efforts make a difference with future doctors and family support dealing with the impacts of childhood cancer.”

It all started with Sam.

Sam was larger than life. As a sophomore in high school, he stood six feet five inches and weighed two hundred twenty-five pounds. He was a gifted athlete with a gregarious personality. When he was diagnosed with osteosarcoma, Sam tackled treatment just like he would an opponent on the field. Unfortunately, four years after treatment ended, he noticed that he got winded during exercise. Doctors discovered that Sam had relapsed with a tumor on his lung. Never one to give up, Sam created the mantra, “Fightin’ till the last breath!”

A number of nationally renowned doctors felt the surgery to remove the tumor was life-threatening. Refusing to live in fear, Sam sought out several opinions until he found a brave surgeon who agreed to go for the “long ball” and remove the tumor and a lung. Sam died during surgery.

Soon after his death, his family formed The Sam Robb Fund in an effort to cement his legacy and continue his tenacious fight against childhood cancer. Their original desire was two-fold: to fund a future oncologist’s fellowship training at the Emory School of Medicine (now named the Sam Robb Fellow), and to support CURE’s Open Arms Meal Program. In 2018, Sam’s family identified an area of great need and decided to move part of their fundraising efforts toward healing the emotional and psychosocial needs of patients and families in and after treatment through CURE’s Counseling Program.

They continue to be committed to training fellows. In fact, 2019 saw the naming of the sixth Sam Robb Fellow, Dr. Juhi Jain. Former Sam Robb Fellows work in pediatric oncology in Dallas, Pittsburgh, Colorado,and Florida, as well as Atlanta. The funding provided by the Sam Robb Fund allows doctors working on their specialty to focus on their medical training without the burden of raising money.

 

The Sam Robb Fund raises money through various annual events – events that Sam would have enjoyed. Getting past the $1 million milestone is a testimony to the commitment and dedication of his family, friends, community, and volunteers who have poured their time and talent into building his legacy. And Sam’s legacy will continue to have an impact on children fighting cancer for a long time to come.

“13 years is a long time, and in today’s fast-paced world, it is easy for people to forget,” said Annamarie Robb, Sam’s mother. “Although we as a family don’t… and never will.”