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Starlights

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.

Follow us on Facebook for weekly updates, and read more stories here. Have you been affected by a childhood brain tumor? Share your story with us to be considered for Starlight publication.

You can locate a Starlight story by clicking on one of the links below. Starlight stories are arranged by the Star's first name.



May 13, 2015
Maisie Webb

Gayla Trower refused to leave an Illinois emergency room until doctors found the cause of her daughter’s severe head pain and vomiting.

She recalls the moment the culprit was discovered. “The doctor was in the doorway. He had a horrible look on his face. [Then] he said, ‘she has a mass in her head.’”

At age 2, Gayla’s little girl, Maisie Webb, was diagnosed with a golf ball-sized ependymoma.

Maisie went through surgery, blood transfusions, chemotherapy and radiation, among other treatments. But her latest scan in November 2014 was clear.

Now 8, Maisie loves to read and act out Disney storybooks. She’s very social and is making straight A’s in school.

“Kids are the strongest,” Gayla says. “I’ve seen adults going through cancer and there is nothing stronger than a kid.”

Help kids like Maisie continue to be strong:
http://pbtf.convio.net/site/TR/Events/General?px=1318174&pg=personal&fr_id=1510.

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May 14, 2014
Maliyah Bolanos

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.”

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Jan. 16, 2015
Marissa Colagrosso

Marissa Colagrosso juggles a career as an EMT while also working toward a nursing degree.

The 22-year-old college junior from New Jersey says she is pursuing a nursing career to be able to give back to those in need – just as others did for her.

Marissa was 12 when she was diagnosed with a medulloblastoma after suffering from intense headaches, nausea and vomiting. Surgeons worked for six hours to remove the golf-ball sized tumor, and then radiation treatments followed. A relapse led to multiple rounds of chemotherapy.

“I don’t know what else I’d be doing,” Marissa says about becoming a nurse. “I really want to comfort and be there for someone during their most vulnerable times like nurses and doctors were for me.”

Marissa has worked hard to develop her skills. Not only has she received her EMT certification, but she holds a leadership position with her Student Nursing Association, works as a tutor and helps organize health fairs.

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May 15, 2014
Matthew Boveroux

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.”

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May 12, 2014
Matthew Williams

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.”

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Dec. 26, 2014
Megan Richards

College freshman Megan Richards is studying to become a pediatric oncology nurse.

Her career goal was influenced by the time she spent in hospitals and doctors’ offices after being diagnosed and treated for a brain tumor at age 9.

“Going through this entire ordeal has taught me many precious life lessons,” Megan says now. “Amid all of this, I have learned to give back after being given so much.”

The Greensboro, N.C., native had a nongerminomatous germ cell tumor in the pineal region of her brain. She underwent surgery, radiation, and physical and occupational speech therapy to regain the motor skills she lost.

As a recipient of a PBTF college scholarship, Megan has donated volunteer hours to the foundation. She helped younger Stars draw and paint canvases before the Asheville Ride for Kids last summer.

If you’d like to learn more about PBTF scholarships, visit www.curethekids.org/family-resources/scholarships.html or email familysupport@curethekids.org.

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Feb. 27, 2015
Miguel Reyes

Miguel Reyes’ world turned upside-down in a matter of minutes.

“It happened super, super fast,” says his mother, Christy.

One minute, the Indiana teen and his family were watching “America’s Got Talent.” The next moment, Miguel was jumping off the sofa, clutching his head.

A grand mal seizure followed. “He never stopped seizing the entire way to the ER,” Christy recalls.

Doctors discovered that an anaplastic brain tumor had caused a brain hemorrhage. Since that night last June, Miguel has been through brain surgery, radiation and chemotherapy.

At 13, Miguel just wants to be a normal teenager, Christy says. He plays video games and loves soccer and basketball, but his favorite sport, football, is now off limits.

“Before Miguel was diagnosed, I didn’t know that so many kids are diagnosed with cancer. Now that my son has been diagnosed, it’s rampant,” Christy says. “We need funding, we need awareness.”

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May 23, 2015
Nick Konkler

The winter before Nick Konkler passed away, he spent time after school building an engine for his 1988 Chevy Blazer.

The Washington teenager planned to race in the High School Drags.

“He loved anything automotive. He was into heavy equipment and anything mechanical,” says his mother, Christina. “As he got older, he got into cars.”

Nick had battled illness since he was 4, when doctors diagnosed him with a PNET brain tumor. After stem cell and radiation treatments, he developed acute myeloid leukemia by the time he was 11. A second bout with the disease more than five years later took his life.

Although Nick wasn’t able to make it to the drag race, his friends made sure the Blazer competed in his memory. It crossed the quarter-mile finish line with a time of 12.85 seconds and reached 109 mph.

“He never gave up,” Christina says. “Research is the only way for these kids to survive, and research takes money.”

Nick was an enthusiastic Ride for Kids participant, and his family is raising funds for the Puget Sound event in his memory. You can join them at
http://pbtf.convio.net/site/TR/2015RideforKids/General?px=1271182&pg=personal&fr_id=2100.

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May 30, 2014
Nick Swafford

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.

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Feb. 6, 2015
Noah Benner

Noah Benner plans to become a video game designer when he grows up.

The Pennsylvania native’s favorite game is Minecraft. He often spends time on YouTube with his dad, a computer programmer, learning new techniques to practice within the game, said his mom, Tiffany.

Noah developed his love of video games after recovering from a choroid plexus papilloma. Migraines and severe fatigue tipped the family off that something was wrong.

Since his initial diagnosis in 2012, Noah has successfully battled two recurrences. Despite three brain surgeries and loss of his peripheral vision, Tiffany said Noah is strong and resilient.

“I don’t know how he did it, but he did it,” she says. “He helped us be stronger, even though it was one of the worst times of our lives.”

Noah celebrated his 10th birthday on Jan. 6, tumor-free.

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Feb. 6, 2015
Noah Willis

Christina Willis assumed her son Noah had a stomach virus when he began vomiting.

But after three weeks without improvement, the Illinois nurse practitioner knew something was seriously wrong with her 2 year old. Her husband also began to notice Noah was having trouble with his balance.

Christina urged doctors to do a CT scan. “My mommy gut kicked in,” she says. In March, just before his third birthday, Noah was diagnosed with a medulloblastoma.

“You never think brain tumor,” Christina says. “I never would have thought my kid could have a brain tumor.”

Noah underwent a total resection and is now receiving chemotherapy. Christina says he enjoys playing with his cars, trucks, trains and iPad. He also loves to eat, and chemo has yet to slow his appetite.

“Aside from being aware to fund future research, it’s important to be aware to be connected to other parents for support,” Christina says. “Just be aware that there are other people out there dealing with something similar.”

To make a donation in honor of children like Noah, visit:
http://pbtf.convio.net/site/TR/Events/General?px=1319962&pg=personal&fr_id=1510.

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July 18, 2014
Pete Martin

Kellei Martin clearly recalls the day in 2005 when she arrived at an Oregon children’s hospital with her 22-month-old son, Pete.

Doctors had just diagnosed him with a pineoblastoma.

“I sat in a wooden rocking chair, stiff, exhausted but sleepless, silently crying and praying while I held my sleeping baby with no idea what tomorrow would bring,” Kellei says.

From that day forward, Pete’s journey included a trip across the country to another children’s hospital, a tumor resection, 40 weeks of chemotherapy and 30 radiation treatments.

But today, Pete is a healthy 10 year old. who’s learning to play basketball and loves to swim, draw and read. He recently hiked 7 miles with his dad.

“Our lives before cancer, ’BC,’ no longer exist,” Kellei says. “Cancer is still the first thing I think of when I wake up in the morning and the last thing I think of before I fall asleep.”

She wants people to be more aware of the lack of funding for childhood brain tumors.

“We know so many kids who have lost their lives and so many families who are mourning their babies,” she says. “[This disease] needs research. Research will save these children’s lives.”

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June 27, 2014
Risa Matsumura

Midoria Matsumura says her daughter Risa has always been a “beaming light.”

“She's always looking for ways to help others and give back to the community,” Midoria says.

But when Risa turned 6, her mother began to notice that her exuberance began to fade. Risa began to experience migraines, nausea and a lack of vision.

Years later, as her symptoms intensified, Risa underwent multiple MRI scans that eventually unveiled a tumor on her hippocampus.. Risa had surgery to remove the tumor in November 2013.

Today, she’s been accepted to college and is focused on her future. Her days consist of going to the gym, studying, volunteering and visiting cancer patients at the local children’s hospital.

“I know there is a cure out there,” Midoria says. “There is a way to relieve the pain and misery that these young children have to experience.”

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June 6, 2014
Shawn Gonce

Shawn Gonce’s favorite thing to do was fish, says his aunt, Tandi.

His proudest moment as a fisherman was the day he finally hooked a shark in Gulf Coast waters.

When Shawn wasn’t fishing off a pier or along the banks of his grandparent’s lake, he could be found drawing and designing flies.

Shawn began to have trouble fishing and drawing when doctors diagnosed him with a pontine glioma in 2007. He endured weeks of radiation and chemotherapy.

When doctors told Shawn there wasn’t anything more they could do, Shawn’s response was simple: “I’m going to go home and fish as much as I can,” Tandi recalls. And he did.

During his battle, an employee at a Bass Pro shop in Texas saw Shawn’s fly renderings and was so impressed that he turned them into real flies, bringing Shawn’s imagination to life, Tandi says. Today, she keeps the flies in a shadow box in her home. “They are beautiful,” she says.

Shawn succumbed to his illness in October 2008, at 9 years old.

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May 23, 2014
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.

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Jan. 23, 2015
Shelby Mell

At 9 years old, Shelby Mell endured treatment for a germinoma brain tumor.

She experienced months of chemotherapy and radiation, about 70 MRIs, four surgeries and four spinal taps.

After a long road of treatment and recovery, Shelby said she clearly recalls the day she felt well enough to go to the movies with her mom. She stood in line at the theater waiting to purchase tickets, wearing a scarf to conceal her baldness caused by treatment.

“I heard a group of six or seven girls talking about me in line,” she recalls. As Shelby turned to face the girls, she caught them pointing and laughing at her.

She realized the girls were not aware of the side effects of treatment. Today, she stresses the importance of raising awareness about childhood brain tumors in an effort to educate the community.

“I am a strong person because [of my brain tumor diagnosis],” she says.

Shelby, now 19, attends community college in Colorado. It’s her hope to become a veterinarian “I’ve always loved animals,” she says.

On Dec. 13, Shelby celebrated nine years without cancer.

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May 22, 2015
Skylor Burgos

Skylor Burgos named his brain tumor “Tommie.”

Doctors diagnosed the Ohio teen with an anaplastic astrocytoma in February 2014.

When he first heard the news, Skylor says, “I was scared mostly. I thought, ‘Am I going to die?’”

“We decided that cancer was just a scary word,” says his mom, Jannette Wysong. “We agreed that we give it a name…so we could talk about it without being so scared.”

Since his diagnosis, Skylor has put on a game face and prepared to “evict” his tumor. “You can’t lose your positivity or your faith,” he says. “It’s a fight. It’s going to hurt. Let’s go kick its butt.”

Now 17, Skylor is undergoing chemotherapy and his tumor is shrinking. He shares his story with other children in treatment to let them know they aren’t alone. Emotional support from family, friends and his school has helped him cope. Skylor’s priorities have shifted since diagnosis. While he once hoped to serve in the military, he now plans to study illustration and graphic design. He also plans to continue to raise awareness for children with cancer.

“Do not let cancer define you as a family,” Jannette tells other parents. “Do not allow cancer to define your child. Take it one day at a time.”

Donate today in honor of Stars like Skylor:
http://pbtf.convio.net/site/TR/Events/General?px=1318181&pg=personal&fr_id=1510.

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May 20, 2015
Sophie Fellows

During a violin concert, Sophie Fellows was forced to step off stage because of a headache.

Doctors diagnosed the 9-year-old with a brain tumor the following day, Dec. 6, 2014.

“She had been our more frequent headache child, but that week she had headaches almost daily,” recalls her father, Chad Fellows.

Sophie’s violin teacher, Carolyn Bever, wanted her student to be able to finish the concert she had missed.

The day before Sophie’s brain surgery, dozens of Carolyn’s violin students traveled from Vermont to Boston Children’s Hospital to help finish the concert. Watch here: https://www.youtube.com/watch?v=wUtms7uVHP0

Today, Sophie continues to play violin, attends speech and occupational therapy, plays with her sisters and goes to school.

“Her double vision is definitely the biggest and most frustrating challenge that we hope and pray will resolve,” Chad says. “She talks slower than before, processes more slowly, but her mind is completely there. We are grateful.”

To make a donation in honor of Sophie and other children going up against this disease, visit:
http://pbtf.convio.net/site/TR/Events/General?px=1318179&pg=personal&fr_id=1510.

(Concert photo and video credited to: KC Cohen, Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.)

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May 24, 2014
Sophie Godoy

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.

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Sept. 26, 2014
Stephanie Collins

Stephanie Collins isn’t your average college student. She’s lived across the world, speaks a foreign language and is a multiple brain tumor survivor.

When Stephanie was 9, she couldn’t pass the “how many fingers?” vision test her sister playfully gave her. The optometrist sent her to Lurie Children's Hospital in Chicago, where she had brain surgery to remove a craniopharyngioma.

Over the past 10 years, Stephanie has had three reoccurrences and gamma knife radiosurgery. She suffers from multiple side effects, including legal blindness, but that hasn’t stopped her from living an above-average life. She moved to Oregon from Chicago for college, spent the summer working as an intern in China, is involved with numerous on-campus organizations and aspires to teach English in China and Chinese in the U.S.

“What I like about teaching is that I can adapt the classroom to the visually impaired,” Stephanie says. “It will be a different experience for students and allow me to teach at my highest potential.”

On Monday Stephanie begins her sophomore year at the University of Oregon with the help of a PBTF Galaxy Scholarship.

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