Every day in the United States, nearly 13 youngsters are diagnosed with one of the deadliest forms of childhood cancer. These children are PBTF Stars, and their inspiring stories are our Starlights.
Grayson Anderson wants to be a “brain doctor” when he grows up, says his mother, Paula. The 7-year-old from Alabama already knows what it’s like to work with doctors and nurses, thanks to his experience with a juvenile pilocytic astrocytoma.
After being diagnosed at age 2, Grayson went through brain surgery and therapy He received his first clean MRI scan about two years ago and continues to take anti-seizure medication.
Now in first grade, Grayson enjoys sports and playing with his three brothers. One day he hopes to play football for the University of Alabama.
“Until this happened to him, I had no idea,” Paula says. “Now, I try to raise as much awareness as I can.” She even has a gray ribbon tattooed on her wrist as a permanent reminder of the cause.
Lila Howington’s days are filled with going to kindergarten, playing soccer, riding her scooter and reading her “Fancy Nancy” books.
The healthy 6-year-old doesn’t remember the surgery, chemotherapy and stem cell transplants she encountered as an infant, says her mother, Annie.
Lila’s health battle began on a family trip from New York to North Carolina when she was 3 months old. She became sick in the car. When her condition didn’t improve after several days, her parents took her to the emergency room. An MRI revealed a golf ball-sized brain tumor.
Feeling comforted with family close by and trusting the medical team who had helped Lila, her family chose to relocate to the Tar Heel State. “A four-day trip turned into six years,” Annie says.
Today, Lila is brain tumor-free.
“She went through something so tough,” Annie says. “She’s really lucky to be here. She’s special.”
Kurt Bourne’s family had a nickname for him – the “mighty deer hunter.”
“He thought he could call deer,” says his mom, Leigh. “He would sit in a deer stand and yell for deer. I would try not to laugh, but he was just so hilarious in his sincerity.”
When Kurt wasn’t traipsing through the woods, the Mississippi native spent his free time playing baseball, fishing and riding four-wheelers.
“He followed in his daddy’s footsteps,” Leigh says.
But he began to have trouble with his favorite activities when he was diagnosed with an anaplastic astrocytoma in 2009. Kurt passed away three months later at age 11.
Leigh says she wants to stress the importance of raising awareness about the disease. “Our kids are our future,” she says.
On any given day, Helena Whitfield can be found swimming, riding her scooter or playing with friends. But the 10-year-old Canadian’s schedule also includes doctors’ appointments and therapies to treat the medulloblastoma she was diagnosed with four years ago.
Helena has battled through surgery, radiation, chemotherapy and numerous hospital stays. “She was a trooper [through treatment],” says her mother, Biserka Maradin-Whitfield. “She was amazing.”
Helena’s family considers her one of the “lucky ones,” but the thought of a recurrence lurks.
“No matter what I was doing, the fear was always there,” Biserka said. “When I would get ready to go to bed, the nightmares would always come.”
Before her daughter’s diagnosis, Biserka didn’t think about pediatric cancer. Now, she’s helping to raise awareness and hopes others will take note.
You can be a part of the fight to cure the kids. Learn how at curethekids.org.
Gavin Carroll was 6 years old when he first experienced symptoms of a brain tumor.
He encountered numbness and nausea, and had his first seizure on Christmas morning, says his mother, Stacy Minnis.
When the family learned that Gavin had a fibrillary astrocytoma, Stacy says that her first thoughts were, “Where do we go, what do we do, what are my options?”
Her once-active elementary school student now struggled with paralysis on the right side of his body, which sidelined him from his favorite sport – riding his dirt bike.
“When you’re told he may never walk or talk again – it’s hard to put that into words,” Stacy says. Gavin’s surgery was successful. The 11-year-old is now tumor-free and is back on his dirt bike in Tennessee. He’s even playing basketball and baseball.
“It’s very important to us [to raise awareness] because we were so uneducated about it,” Stacy says.
Catherine is in a fight for her life.
The 18-year-old and her mother, Patricia, are working with doctors from around the country to combat Catherine’s Grade IV glioblastoma.
Doctors diagnosed the New England resident at 17. She has endured three surgeries and radiation, and is currently on chemotherapy.
Patricia quit her job to become her daughter’s full-time caregiver, and hasn’t left her side yet. “We’re very hopeful,” Patricia says. “We’re looking for that miracle. We’re looking for cutting-edge therapy.”
Before her diagnosis, Catherine played field hockey and excelled in school, and she continues to focus on daily activities despite her health issues. She works part-time, enjoys going to concerts and hopes to attend college this fall.
Gregory Balestrero distinctly remembers the teenager he met at a Pediatric Brain Tumor Foundation Ride for Kids event in 2011.
The high school student, who was among six brain tumor survivors in attendance that day, had all A’s in math despite visual impairments.
“They carried no sadness or resentment,” Gregory says of the Ride for Kids Stars. “These kids were overcoming such challenges.”
After the ride, Gregory and his wife, Frances Higgins, pondered ways they could help the children. “My wife and I wanted to do something more long-lasting,” Gregory says.
In 2013, the couple created a named scholarship fund at the PBTF in honor of a child they had never met – a co-worker’s friend. Julia Kivlin died from a brain tumor at 15.
“We think it’s a great way to continue to support the community,” Gregory says. “There’s a lot of work left to do.”
You too can be a leader of hope and give the gift of education. For more about creating a named scholarship, call 800-253-6530 or email firstname.lastname@example.org.
Joana McKeoun never complained about the challenges she faced, says her mother, Tina. One of those challenges was an oligoastrocytoma, diagnosed in 2008.
Through surgeries, chemotherapy and radiation, Joana continued to attend high school. She even took on extracurricular activities such as volunteering for Relay for Life and the Make-A-Wish Foundation, running cross country and track, and ballroom dancing.
She went on to study at the University of Michigan and hoped to become a journalist.
Tina says that her daughter never gave up, even when the tumor came back twice. The determined scholar refused to miss school, scheduling her treatments around her class schedule.
Days after her 21st birthday, Joana succumbed to the illness she had fought for six years. Her mother is now spreading awareness about the disease.
“It’s the worst feeling when a doctor is so helpless and they tell you there’s nothing else they can do,” Tina says. “I hope one day parents don’t have to hear that. I want to help find a cure for all children.”
Isaiah Perry is a rambunctious 2-year-old, says his mother, Shelly Laterreur.
His spunky attitude has helped him bounce back from numerous health battles.
When Isaiah was 8 months old, doctors diagnosed him with a ganglioglioma and Arnold-Chiari malformation – a defect in the cerebellum. Brain surgery was followed by occupational, physical and speech therapies, and he has routine MRIs.
Between hospital visits and doctors’ appointments, Isaiah enjoys playing with blocks, reading books and watching his favorite television show, Dora the Explorer. He’s also a big fan of Batman and Spiderman. “He’s a very happy-go-lucky kid,” Shelly says. “Nothing holds him back.”
Shelly says it is imperative that people learn about childhood brain tumors and their lasting effects on families.
“Before Isaiah was diagnosed with this, I was not aware of this disease,” she says. “It changes your life forever.”
During a routine eye exam at age 10, Alyona Juntunen covered one eye to read the letter chart. To her surprise, she could not see.
The eye exam spiraled into an MRI, a brain tumor diagnosis, six rounds of chemotherapy, brain surgery and proton radiation. As a result, Alyona has lost her pituitary gland and a significant amount of vision in one eye, but she’s cancer-free.
“She’s a fighter,” says her mother, Jayne. “[And now] she’s your typical preteen girl.” Alyona is active on the swim team and in student government at her school in Minnesota. As a student council member, she gained her school’s approval for a “Gray Day” in May to promote brain cancer awareness.
When she grows up, she wants to help other kids by becoming a child life specialist.
Matthew Williams is on a mission to collect and distribute hats to children facing hair loss as a result of cancer treatments.
In fact, his organization, Matt’s Hats, has doled out more than a thousand caps to children.
Matthew says he understands the difficulties of rediscovering yourself after treatment. At 9 years old, he was diagnosed with an ependymoma.
“I remember crying after hearing the word ‘surgery,’” Matthew says, now 16. “I had no idea how to handle being different.”
Matthew began collecting hats to hide his scar and hair loss after surgery and radiation.
Later he felt the need to help other children in similar situations. That’s when he formed Matt’s Hats and donated his own caps.
“I want to be a role model or benchmark for other people,” Matthew says. “I want to reach out to kids and show them that this isn’t the end.”
When Sandra LaLiberte found out daughter Cheyanne had a brain tumor, she thought she was in the middle of a nightmare.
Cheyanne, then 3, sat on a gurney playing with stickers when doctors broke the news to her parents, Sandra says.
“To see that little head and this huge tumor, I thought, ‘This has got to be a bad dream,’” she recalls. But Cheyanne fought back. She endured six brain surgeries to eliminate the pilocytic astrocytoma. “She’s my biggest hero,” Sandra says. “She’s never said, ‘Why me?’”
Today, Cheyanne is 15 and a freshman in high school. When she isn’t listening to her iPod or maintaining straight A’s, the Boston native is doing her part to raise awareness by selling handmade bracelets. She’s made more than 5,000 so far.
“I may have gone through a lot, but I think I'm stronger than ever,” Cheyanne says. “I'm a fighter.”
Fighters come in all sizes.
Maliyah Bolanos was just 3 months old when doctors diagnosed her with seven brain tumors and multiple spinal tumors.
Before then, Danielle and Micheal Bolanos say their daughter showed symptoms such as loss of appetite and lethargy. But she seemed to be a happy baby and loved to be held, the North Carolina couple says.
Despite surgeries and a brief period of chemotherapy, Maliyah succumbed to the disease in February, at 4 months old.
“She was a fighter, and we love and miss her more than words can explain,” Micheal says.
He is determined to increase understanding for other children and families combating brain tumors, and to inform people who are unaware of the disease.
“It is important to raise awareness so everyone knows how aggressive and deadly this disease is, it can happen to anyone,” he says. “And no one deserves to ever go through losing a child to this horrible disease.”
Lorie Boveroux and her son Matthew call themselves the “brain gang.”
Matthew underwent surgery for a brain tumor in 2011. His mom did the same less than three years later.
Lorie says she draws strength from her son. The night before her surgery, Matthew shared this advice: “You just have to sleep; the doctor does all the work, so you really don't need to be worried about anything.”
“He never flinched at the tests and other things he was forced to endure, and his spirit brings him through almost any obstacle,” Lorie says of Matthew.
Today, the Connecticut natives are doing well. They tend to joke and compare the length of their scars and rib each other about who had the most stitches. “We laugh a lot,” Lorie says. “That’s how we cope.” Matthew, 8, now helps raise awareness for the disease. He even donates a third of his allowance to the Pediatric Brain Tumor Foundation.
In his spare time, Matthew plays lacrosse, participates in 5Ks, attends Cub Scouts, sings in the church choir, takes ballet for balance and rides his bike. And when he grows up, he plans to become president of the United States.
Lorie says, “I hope he can inspire others who are struggling with their own battles.”
Amaya Robinson is an active 11 year old, says her mother, Melissa.
The Maryland preteen plays basketball and runs track, despite the fact she has fought five brain tumor recurrences.
Doctors first diagnosed Amaya with a glioblastoma multiforme tumor when she was 7.
Melissa says she knew something wasn’t quite right when her daughter began to stare blankly into the distance and started vomiting. But it was a seizure that landed Amaya in the hospital for an MRI, which revealed her tumor. “It’s been pretty rough,” Melissa says. “We are trying to be as normal as possible, but it’s hard…You don’t want to see your child go through that.”
One of the greatest challenges, Melissa says, is keeping her family motivated at all times. She also wants to generate awareness to help other families in the fight against brain tumors.
“I never really heard about someone having a brain tumor until my child was going through it,” she says. “You don’t think it would happen to you.”
Doctors gave Brody O’Donnell a 10 percent chance of survival when he was diagnosed with an atypical teratoid/rhabdoid tumor at 11 months old.
Two years later, his MRI scans are clear.
“He’s your typical little 3-year-old,” says his mom, Elizabeth. “You would never know he had a brain tumor.”
After the diagnosis, Elizabeth says her family refused to give up. Brody endured seven months of treatment that included high-dose chemotherapy and 28 sessions of radiation.
Today, Brody is out of the hospital. He plays in a children’s gym and takes music classes. “We’re just enjoying life,” Elizabeth says.
“It’s important to share your story. We’re here. There are survivors.”
You can help raise awareness by telling us your story at www.curethekids.org/family-resources/share-your-story.
Tammy Ledene thinks about her daughter, Connor, every day.
Doctors diagnosed Connor with a glioma in February 2008. Connor lost her battle with the disease about seven months later.
“No 8-year-old should ever have to find out she has cancer,” Tammy says.
Today, Tammy says she aims to spread awareness about the disease by sharing Connor’s story. “I talk about her all the time,” she says. “I was blessed with that little girl.”
Tammy says Connor showed strength and courage during her battle. In between treatments, Connor helped to spread joy through her music – playing guitar, violin and piano. Her mother says, “She handled her illness with more humility and grace than I could ever express.”
Before doctors diagnosed Brendan Hemphill with a brain tumor, he experienced flu-like symptoms, says his mom, Melissa Keen.
“He was diagnosed with a virus that was going around,” Melissa says. But when Brendan began to have frequent seizures, she knew it wasn’t just a virus.
A CT scan revealed a pineal parenchymal tumor. Since diagnosis, Brendan, age 1, has experienced paralysis, chemotherapy, recurrences and brain surgery, among other medical concerns.
“He’s a little miracle,” Melissa says. Her advice to other parents in a similar situation is to be advocates for their children.
“If we would have not been advocates for Brendan, we would have lost Brendan,” Melissa says. “You have to find that courage.”
Melissa says she shares Brendan’s story in an effort to raise awareness about the disease and the lack of funding for research.
She says, “We’re going to have to make some noise so people will listen.”
Buford Watson says his daughter Angel loved playing dolls and holding babies.
“Angel was one in a million,” he says. “She was loved by everyone who came in contact with her. Angel was indeed a perfect child.”
Doctors diagnosed Angel with a PNET brain tumor in March 2008. The first-grader succumbed to her illness in May 2011; two days shy of her 7th birthday.
“Angel was my oldest child,” Buford says. “She loved her brothers and sister and I keep going for them because I know she would want the best for her family.”
Through her battle, Buford says his daughter experienced tremors, paralysis and temporary blindness. Today, he shares her story to raise awareness for the children and families facing this disease. “There is nothing more heart wrenching than to listen to a terminal child talk about what they will do when they grow up, knowing they never will. They will never have their first love, first car and I'll never walk my daughter down the aisle. These children have their lives plucked from them and it isn't fair…. Raising awareness for these little angels could help with funding needed for research and provide a cure.”
To share your story and to help spread awareness, visit http://www.curethekids.org/family-resources/share-your-story.
Michelle Seelen says she cringes every time she hears a child complain of a headache.
Her son, Gavin, was diagnosed with a juvenile pilocytic astrocytoma at age 5. He complained of severe headaches prior to his diagnosis, Michelle says.
Aside from sensory issues involving taste and sensitivity to loud sounds, Gavin experienced few limitations as a result of surgery.
Michelle says that after Gavin’s diagnosis, it helped her family to seek out and read survivors’ stories, and to talk to other parents of brain tumor patients. Her greatest tidbit of advice is to “Stick together.”
Today, Gavin, from Alberta, Canada, enjoys playing video games and building with Legos.
He celebrated his 12th birthday this month – tumor free.
Helen Kivlin often found her daughter Julia on the phone with friends working on group homework late into the night.
Julia excelled in school and also had a knack for sports, particularly volleyball and basketball. Her ultimate goal was to attend Drexel University and become a photographer, Helen says.
Julia’s upbeat attitude and zest for life didn’t even falter when doctors diagnosed her with a brain tumor.
And support never wavered for Julia. Teammates and classmates rallied around the teen, raising money to help Julia through her treatments. And after that, they went on to raise funds for the children’s hospital where she was treated.
Despite her hard-fought journey, Julia died three days after her 15th birthday, in February 2011. But her memory lives on through a named PBTF scholarship fund created last year by donor Gregory Balestrero.
Helen thinks her daughter would be thrilled to know other brain tumor survivors now have the chance to pursue their education.
“She won’t be forgotten,” she says. “Her struggle won’t be forgotten.”
Shelby Elyse Taylor
Shelby Elyse Taylor plans to become a child life specialist.
After all, she says, child life specialists helped her get through her brain tumor diagnosis in 2005.
“They are my favorite people and I wanted to become one of them,” says the college student. Doctors diagnosed Shelby Elyse with an oligodendroglioma when she was 13. She says the diagnosis shocked her and she worried people would view her differently. But support from family and friends poured in. Her classmates sent daily get-well cards that lifted her spirits.
“Diagnosis isn’t the end,” Shelby Elyse says. “You need to fight for yourself.”
And she did just that. Nine years after her brain surgery, Shelby Elyse is 22 and her tumor is stable. She says she feels great, but does encounter migraines and becomes anxious before routine MRI scans.
“My prayer is that one day there’s a cure,” she says.
Sophie Godoy’s days are blended with physical and occupational therapy, listening to music and playing with blocks, says her mom, Suzie Navarro.
She’s a 4-year-old in the process of recovering from a brain tumor.
Sophie’s heath journey began days before she turned 1, Suzie said. The little girl experienced a month of frequent vomiting before receiving the diagnosis Suzie feared – a PNET brain tumor.
“The doctor told me, ‘Ms. Navarro, you need to sit down,’” Suzie recalls. That day, Sophie was given a 20 percent chance of survival.
“I told them, ‘First of all, her name is Sophia, she’s not a statistic,’” Suzie said. “We fight.” Sophie endured multiple surgeries and chemotherapy. She suffered a stroke and even required CPR following a PICC line surgery.
But today, Sophie has proved doubters wrong. Although she’s lost her vision, she’s recovering. “She enriches my life,” Suzie says.
Zachary Prichard plans to pursue a career with computer animation, says his mom, Tracie.
“He loves video games,” she says of her 14-year-old. “And they help his hand-eye coordination.”
That’s important for Zachary, who has battled a juvenile pilocytic astrocytoma since he was 5.
Before his diagnosis, Tracie says she felt something was not quite right. Zachary experienced right-side weakness, even falling in the middle of playing baseball games.
Doctors were able to remove 90 percent of the tumor, but Zachary still encounters weakness, headaches and occasional dizziness.
“He is such a brave boy and never complains,” Tracie says. “He always has a smile on his face.” Today, Tracie says, “He’s doing great.” Zachary, who is homeschooled, still keeps up with sports, taking on golf, karate and bowling.
His mom’s advice to other families: “If you feel like something is wrong, keep pushing.”
Tara Nori plans to become an actress when she grows up, says her mom, Kelly.
“I’m 9 1/2. If I don’t get my career going soon, I’m not going to be an actress,” Tara recently told her mom. Kelly laughs as she recalls her daughter’s comment. “She’s a jokester,” she says.
But Kelly says it was the same determination that helped get Tara through a brain tumor diagnosis at age 2.
Tara has since endured multiple surgeries and chemotherapy treatments and has learned to walk and talk again. Today, her tumor remains stable.
“Her future is still uncertain, but each time Tara faced a setback, strength and courage were her guide.
Despite her mild physical deficits and difficulties learning, Tara is determined to have a happy life,” Kelly says, adding, “Research is so underfunded. We don’t need pity, we need money.”
Lesane “Jimi” Moyle loves drawing, writing stories and playing cards, says his mom, Jennie.
Those activities make his days feel normal, despite weekly chemotherapy treatments and routine MRIs.
In October 2013, doctors diagnosed 6-year-old Jimi with medulloblastoma. Since then, the young Australian has endured two craniotomies, radiation and chemotherapy. He still has 11 months of chemotherapy ahead of him.
Jimi’s tumor and treatment have limited his mobility on the right side of his body. He now writes with his left hand and relies on a wheelchair.
“He is an amazing little man. So full of life and courage,” Jennie says. “He inspires me every day.” On rough days, Jennie focuses on her children. “I let all their laughs and smiles run through my head. I have to stay focused on the positives.”
She encourages people to help spread awareness about childhood brain tumors because they never know when the disease could affect them.
“More awareness will hopefully evolve into more funding and eventually one day a cure,” Jennie says.
Late in her ninth grade year, Amy Brinton started getting headaches. She also had trouble memorizing vocabulary words in English class and began to string together strange sentences.
After multiple trips to the doctor’s office and emergency room, an MRI confirmed that Amy had a brain tumor. Doctors diagnosed her with a pilocytic astrocytoma in 2011.
Despite her health battles, Amy continued to excel in her hometown of Hoover, Ala. She was a member of her high school’s drum line and a volunteer at the Birmingham Zoo. The Hoover High School senior homecoming queen also received the senior class superlative of "most inspiring" and the school’s "mountain top" award for her perseverance.
Now 18, Amy will attend Auburn University to study zoology this fall. Doctors will continue to monitor the small amount of tumor that remains.
“When you hear [your child has a brain tumor], it’s so scary. It’s doomsday,” says Amy’s mother, Rhonda. “But I want people to know it’s not definitive. Every bit of research that can be done will help.”
Nick Swafford is one of eight children, says his mom, Susan Kramer-Swafford.
So when her son began vomiting on occasion, she immediately thought he had the flu that his siblings seemed to be passing around.
But when Nick’s symptoms didn’t improve like the others, Susan took him to the doctor. He was tested for strep throat, food allergies, inflammatory issues and celiac disease.
When these tests came back negative, more blood work followed. A CT scan finally revealed a medulloblastoma in January 2011.
“This is going to be life-changing...but I'm strong,” Susan remembers Nick telling her at the time. Doctors successfully removed Nick’s tumor and he then battled through weeks of radiation and chemotherapy.
Now 11, Nick is cancer free and thriving. “I work hard to celebrate the moment we're living in right now and stay positive about the future,” his mom says.