Community Spotlight: Par for the Kids

Pictured above: Bennett at Par for the Kids with his dad Jason and other golfers.

In March 2018, our 9-year-old son, Bennett, was diagnosed with a brain tumor. After several months of balance and motor skill issues, our pediatrician sent him for an MRI. Our hearts shattered when the doctor pulled us into a quiet room and gave us the news no parent should ever have to hear:

“We found something on the MRI.”

These words changed our lives forever. The radiologist had found a tumor in the middle of Bennett’s brain. Once the initial shock of his diagnosis began to wear off, we met with a pediatric oncologist and neurosurgeon and quickly realized there weren’t many great treatment options. Chemotherapy treatments – many of which were developed for adults and different types of cancer – would just be a band-aid that could cause permanent damage to his heart and other organs and secondary cancers later in life. Radiation is also harmful to developing brains, especially in very young children. And while there have been cutting-edge advancements in adult brain tumor treatments, similar research has not kept pace for kids.

Realizing there’s no real cure for our son’s tumor was a shock.

We wanted to change things. We wanted to feel like we were doing something – not only for our son, but for the thousands of kids in our community and around the world who are living with brain cancer.

That’s why we started Par for the Kids, an annual golf tournament that benefits the Pediatric Brain Tumor Foundation. Since 2019, Par for the Kids has raised over $140,000 for pediatric brain tumor research. Every dollar brings us one step closer to more effective and less harmful treatments. Every dollar brings us one step closer to a cure.

Kids like Bennett don’t have time to wait another month, another week, another day for us to raise money to stop the deadliest childhood disease. They deserve an opportunity to live full lives right now. Join us in taking action today.

– Elizabeth and Jason Testa, Bennett’s parents

We need cures. We need action: A mother’s perspective on pediatric brain cancer

I remember April 28th, 2018 – the day my son Ezra was diagnosed with a brain tumor.

I remember his perfect round face and how he ran around on toddler feet all morning.  I remember how swollen my eyes were from crying later that night having lived through my worst nightmare, wondering if I’d ever be okay again.

Most parents never think this could be their story one day, too. Right up until the minute we heard the words “your baby has a large mass in his brain” I honestly hadn’t ever considered that babies could get brain cancer.

May is Brain Tumor Awareness Month, and the Pediatric Brain Tumor Foundation community will recognize this disease’s impact on families. We will share our stories. We will call on you and others to take action.

I’m honored to be part of the movement to end childhood brain cancer and to share our story with you. Throughout our journey, my family has gained perspective. I used to make myself sick worrying about long-term things. I mourned that Ezra wouldn’t be able to play sports again because of his vision loss. My bones ached that he would never be able to drive.

Then this past Fall happened. We received news that Ezra’s tumor had grown and his chemotherapy was no longer working. Surgery lasted nine hours, and made little difference in his outlook. To make matters worse, Ezra’s incision began leaking cerebral fluid, he felt unimaginable pain, and he began vomiting, which required a shunt.

It was an impossible situation.

My perspective changed. Worries about the future became worries about this day, this minute. I no longer trouble myself with the future. Perspective lies in the present. It’s the painful shock of a seasoned veteran who doesn’t want to see this disease happen to other beautiful babies.

We need cures.
We need action.
We need you to join the movement and donate

– Ramona King, Ezra’s Mom

Jack: #55’s Drive Inspires Lifechanging Breakthroughs for Children with Brain Tumors

Jack’s parents, coaches, and teachers all describe him the same way: a helper, always there for others, never unkind or insensitive. He captivates people with his smile and draws them in with conversation.

On May 20, 2019, his family’s life changed in the blink of an eye when he was diagnosed with a brain tumor at age 11. Over the next month, Jack would undergo multiple tissue biopsies and MRIs to confirm the type of brain tumor was a pediatric low-grade glioma.

This tight-knit family of five includes Jack, his parents Tony and Sue, and older twin sisters Madison and Allison. They are athletic and adventurous – skiing, boating, and snowmobiling together – and they love to travel and try new things, with a focus on community and bringing people together.

Looking back, his dad will tell you that Jack’s brain tumor journey started in December 2018. Jack was on cloud nine, joining a hockey team in the fall and carrying on his family’s ice-skating tradition. Those who knew his late grandfather would tell Jack that he skated just like him. That December Tony noticed that Jack was “wobbly” while skating and performing leg-strengthening exercises. Shortly after, Jack seemed to get his feet confused during boxing lessons, and he had difficulty picking up the puck at hockey practice. These athletic challenges were not happening consistently, so like most parents, Tony and Sue attributed them to a growth spurt. Then in April 2019, the family went on a vacation to Costa Rica, where Jack’s hand went numb. They knew something was wrong.

Jack suffered through an initial chemotherapy regimen that lasted 62 weeks, with weekly treatments every Friday for four weeks, followed by a two-week break before starting up again. Every Saturday following treatment, he was home sick from chemotherapy’s side effects, while his friends were out doing typical kid things. He had a cyst that caused extreme pressure on surrounding brain tissue that doctors had to drain a few times each month, first through multiple surgeries and then through an implanted reservoir. He also endured physical therapy two to three times per week and occupational therapy to address weaknesses on his left side and proactively regain as much strength as possible before the next surgery.

Although his treatment journey was painful and difficult, Jack pushed through with fierce determination. August 10, 2020 marked a turning point for him. In his 55th week of treatment – the same number as his hockey jersey – Jack’s family finally received the news that they had been hoping for. His MRI showed retraction of the tumor for the first time. This allowed him to stop chemotherapy treatment by October 2020. By November 2020, Jack’s cyst was also smaller and no longer needed draining. MRI scans over the next year showed tumor shrinkage and stability with no new growth.

Today, Jack is doing well in school, enjoying physics and geometry. He recently finished a great season of snowmobiling — riding for the first time in Canada — and just started his lacrosse season.

Jack’s family shares the lingering trepidation that many families face with each upcoming MRI scan. But also, like others, Tony says they’re grateful for the community they found and hope to help others who are facing a similar journey.

“When Jack was in treatment and we were yearning for a success story, the Pediatric Brain Tumor Foundation gave us hope. Now that Jack’s tumor is stable, we want to do whatever we can for other families. We’re proud to partner with the Pediatric Brain Tumor Foundation to redefine how pediatric low-grade gliomas and other brain tumors are treated so that one day doctors can truly stop these tumors in their tracks, eliminate the chance of them returning, and prevent children from being left with the side effects that chemotherapy and surgery can cause. Together, we got this.”

– Tony, Jack’s father

Inspired by Jack’s determination, his family created Jack’s Drive 55 to inspire others and raise money for research through the Pediatric Brain Tumor Foundation. Their community’s generosity is paying off — laying the groundwork for precision medicine breakthroughs that will change children’s lives.

“Jack is often my inspiration,” says Sue. “He never once complained about his diagnosis or while going through treatment. He really has the quality of living in the moment and appreciating those around him, and that reminds me to slow down and be present.”

While Jack’s family knows a cure won’t be immediate, they also know doing nothing isn’t an option. Don’t wait to give families the hope they need and the future they deserve. Join Jack’s family in donating today.

Adita: Frente al “fantasma silencioso”

If you would like to read Adita’s story in English, click here.

Adita es una niña inteligente, cariñosa, sana y dulce que le encanta la escuela y tiene una relación muy cariñosa con su hermanito Mario. Su vida cambió para siempre en noviembre de 2017, cuando comenzó su camino por un tumor cerebral pediátrico.

Unas semanas antes de su diagnóstico, empezó a vomitar mucho sin motivo aparente, pero se recuperaba en cuestión de minutos. En sus clases de danza empezó a tener dificultades con la coordinación y la dirección. Estaba claro que algo andaba mal, pero su familia no sabía qué.

Su madre, Ada, la llevó al pediatra, quien le dijo que acudiera de inmediato al hospital. Adita y Ada fueron trasladadas en ambulancia y una hora más tarde le estaban haciendo una resonancia magnética. Después de una hora, los médicos comunicaron que Adita tenía un tumor detrás del cerebro, cerca del cerebelo, y que la posibilidad de tener un meduloblastoma era muy alta.

Al día siguiente le colocaron una derivación, una semana después una resección, y así continuó durante un año de procedimientos, pruebas, análisis, tratamientos e ingresos hospitalarios.

Regresó a la escuela, pero como una niña totalmente diferente“, dijo Ada. “Le cuesta aceptar su vida nueva, pero es una niña tierna e increíblemente madura. Seguimos luchando contra este fantasma impredecible y silencioso“.

Adita siempre ha soñado con ser bailarina y policía. Ha empezado a aceptar que, debido a su síndrome de la fosa posterior, su equilibrio puede ser un problema, pero es idealista y quiere proteger a la gente y luchar contra las injusticias. Admira al personaje de Felicie de la película LEAP porque era huérfana y luchó contra todo para convertirse en bailarina de ballet y bailar algún día en París. Al igual que Felicie, Adita espera alcanzar algún día sus sueños de ser bailarina a pesar de su diagnóstico.

Adita y su familia oyeron hablar de la Pediatric Brain Tumor Foundation a través de una investigación sobre recursos de apoyo familiar y están encantados de contar con una comunidad que comprende las complejidades de un diagnóstico de tumor cerebral. Nuestra guía de investigación sobre la supervivencia y los grupos virtuales de apoyo familiar también han ayudado a toda su familia a seguir recorriendo su camino.

Si a su hijo le han diagnosticado un tumor cerebral, la Pediatric Brain Tumor Foundation está aquí para su familia en cada paso del camino. Visite para explorar el apoyo que ofrecemos a las familias o comuníquese directamente con nuestro equipo completando nuestro Formulario de Conexión Familiar.

Ava Strong: One Mom’s Journey to Advocate for Better Childhood Cancer Treatments

From the time she wakes up to the time she goes to sleep, Ava is talking, singing, and dancing. She is a joyful, active child who loves to paint, color, and make crafts. Her world changed when at only four years old she started having frequent bouts of morning vomiting, which doctors thought could be from acid reflux or abdominal migraines. She later developed a localized headache in the back of her head. The headache prevented Ava from wanting to participate in her favorite activities; instead, she would spend most of her time laying down. One night her mother Kassi noticed Ava’s balance was off and decided to take her to the emergency room. 

A CT scan revealed a halo orange-sized tumor in the back of Ava’s cerebellum. Three days later she had surgery to remove the medulloblastoma tumor. 

Medulloblastoma has four subtypes and Ava’s tumor was group 3, the most aggressive form. Her family was grateful the tumor did not spread, and all the tumor was removed. However, she still required an aggressive approach to treatment. This led Ava to Children’s National Hospital to begin 6 weeks of chemotherapy and radiation, then 6 months of high-dose chemotherapy at Children’s Hospital of Richmond. She stopped treatment in June 2022 and her recent 3-month post-treatment MRI showed no evidence of disease. 

Since Ava was diagnosed with brain cancer, her mom Kassi has used the power of social media to provide updates to their community and spread awareness. She started posting on Instagram and Facebook as a way to limit the overwhelming feelings that come with reliving the situation, but later became a space to advocate for other kids like Ava. 

Ava Strong started when she was first diagnosed. When you first enter this world, it is very overwhelming, and everyone wants to know what’s going on. I created the Instagram and Facebook accounts to have one source for anyone who wanted to know information. As people stumbled upon the Instagram and I grew stronger and angrier with the information, it became more of a platform for me to voice important issues,” says Kassi. 

One way Kassi used the Ava Strong platform was by reaching out to celebrities to amplify the need for more childhood brain cancer research. Only one person responded—Emmy award-winning broadcast journalist, Anderson Cooper. His response was simple. He asked “what can I do?”


Kassi asked if Anderson would be willing to share their page to help spread awareness. He wanted to do more and asked to interview both Kassi and Ava about her pediatric brain tumor journey, the lack of funding that goes towards childhood cancer research, and the harsh reality of childhood cancer because of the outdated treatment options. 

In his interview with Kassi and Ava, Anderson shared that he was ignorant on this topic and thought “kids must get the most cutting-edge treatment, and there must be huge research to be done in how to save the most innocent among us.” But he learned the complete opposite is true. Pharmaceutical companies aren’t incentivized to research and develop new drugs for the many rare types of pediatric cancers and government funding mainly benefits adult patients. 

“If research is going to be done for these kids, it’s going to be through foundations like the Pediatric Brain Tumor Foundation,” shares Kassi. “It takes people getting involved with these types of organizations to get the funding we need.” 

This May marks the second Brain Tumor Awareness Month since Ava’s cancer journey began. While she’s able to embrace every second of her life right now, her family knows other kids with brain cancer won’t get that opportunity.

With each passing day, more children are diagnosed and dying from the deadliest childhood disease. More families are mourning the loss of futures that will never be fulfilled.

Kids like Ava can’t wait another year, another month, another day for your support. Don’t wait until May – donate today and give kids with brain cancer the futures they deserve.

Adita: Facing the “Silent Ghost”

Puede saber más sobre Adita y su familia en Espanol.

Adita is a smart, caring, healthy, and sweet child who loves school and has a very loving relationship with her little brother, Mario. Her life forever changed in November 2017 when she started her pediatric brain tumor journey. 

A few weeks before her diagnosis, she started to vomit a lot for no clear reason, but she would recover fast in minutes. In her dance classes she started struggling with her coordination and direction. Clearly something was wrong, but her family didn’t know what. 

Her mother Ada took her to the pediatrician, who said to immediately rush to the hospital. Adita and Ada were transported via ambulance and an hour later she was having an MRI. After another hour passed, doctors shared that Adita had a tumor behind her brain near her cerebellum, and her possibility of having medulloblastoma was very high. 

The next day she had a shunt placement, a week later a resection, and then continued through a year of procedures, testing, labs, treatments, and hospital admissions.  

“She returned to school, but as a totally different child,” shared Ada. “She’s struggling to accept her new life, but she’s a tender and incredibly mature girl. We are still fighting this unpredictable and silent ghost.” 

Adita has always dreamt of being a dancer and policewoman. She has started to accept that because of her posterior fossa syndrome, her balance may be an issue, but she is an idealist and wants to protect people and fight for injustices. She admires the character of Felicie from the movie LEAP because she was an orphan and fought against everything to become a ballet dancer and one day dance in Paris. Just like Felicie, Adita hopes to one day reach her dreams of being a dancer despite her diagnosis. 

Adita and her family heard about the Pediatric Brain Tumor Foundation through research about family support resources and are thrilled to have a community that understands the intricacies of a brain tumor diagnosis. Our survivorship research guidebook and virtual family support groups have also helped their entire family continue to navigate their journey.

If your child has been diagnosed with a brain tumor, the Pediatric Brain Tumor Foundation is here for your family every step of the way. Visit to explore the family support we offer or connect with our team directly by filling out our Family Connection Form.

Ethan: Resilient through a Low-Grade Brain Stem Glioma Journey

Ethan, the eldest son of the family, was born on May 15, 2000. He was compassionate, loving, and genuine, and dreamed of becoming a rap artist. At age six, he started a long journey with a low-grade brain stem glioma.

Ethan’s tumor was discovered after he started having blurry vision, a hard time hearing, and would wake up in the middle of the night vomiting. After he was diagnosed at six years old, he had his first surgery to relieve a buildup of fluid in his brain called hydrocephalus. This surgery left Ethan visually impaired. He later had his first craniotomy and was set up with a treatment plan. He endured 18 months of chemo, ending when he was eight years old.

This process was difficult for his family who had to navigate learning about brain tumors and visual impairment in tandem. They did a lot of research on their own for services to help with modifications at home and school. Ethan didn’t like using a cane, so his family stuck with sighted guides.

Once he was done with treatment, Ethan was able to attend school more often since he no longer had side effects from chemotherapy. He used modifications like enlarged printing for his schoolwork and was able to play with modified card and board games at home.

When he was in fourth grade, Ethan’s school taught him braille, which was much easier as the large print was becoming too difficult for him, and many of his friends at school sight-guided him. He started showing interest in rap music, writing lyrics from age 12 to 17.

“He was very resilient, relentless, determined, and motivated to not let the disease or his blindness stop him from doing as much as he possibly could with his life and enjoying as much as he possibly could with his life. He never gave up. The disease just basically became more than he could fight,” says his mother, Vicki.

The smart, social, and determined Ethan was excited to start high school when a routine MRI showed his tumor was growing again. When he ended up with hydrocephalus, doctors did another craniotomy, which left him completely blind.

Ethan spent his freshman year in and out of the hospital after the shunt doctors put in became infected. His sophomore and junior years were better – he was able to go to school more regularly and had a social life with his friends.

A few months into his senior year of high school, a second tumor was discovered. At first, doctors were not worried about it, but Ethan started fainting and having seizures. In March 2017 at seventeen years old he ended up in the hospital from a seizure. After he returned home from the hospital, he had to learn how to do some tasks like how to walk with a cane. However, he was also partaking in new eighteen-year-old activities like opening his own checking account.

In September, the day after Labor Day, Ethan was non-responsive after a hemorrhage. Doctors didn’t think he would make it through the night, but he did. After additional procedures and monitoring, his doctors suggested that he enter a nursing home so he could have skilled care and build enough strength to come home.

Months later in May doctors discovered the tumors had spread through his brain and there were no more treatment options available. He entered hospice and one month later passed away at age 18. Vicki shares that Ethan was never expected to pass away. His prognosis was that his tumor would dissolve or stabilize by the time he was 23.

Ethan left a huge impact on the world, and any recognition and remembrance of him is very comforting for his mother and family. Through her grief journey, Vicki found the most support from other parents in the Pediatric Brain Tumor Foundation’s peer-to-peer mentoring program, her online Cancer and Afterlife groups, and grief therapy.

“Everyone grieves very differently and everyone’s experience after they lose their child is very different. Some parents have found that they pretty much would lose everybody from their families and friends, and that’s been the case for me mostly. For those types of families, I would say to really reach out to providers who specialize in grief and get involved in support groups for grieving parents. Sometimes you make new friends in those groups too.”

No parent is prepared to hear their child has a brain tumor, and the journey can be overwhelming and lonely. Through resources like our peer-to-peer mentoring program and virtual support groups, the Pediatric Brain Tumor Foundation is there for families every step of the way.

You can bring hope and healing to more families by donating toward our year-end campaign at you or a family you know need support this holiday season, contact us at 800-253-6530 ext. 3 or [email protected] to speak with a member of our Family Support team.

Matthew: Long-term Survivorship with a High-Grade Glioma 

Ten-year-old Matthew spends his time playing with his older siblings, telling jokes, and dreaming of becoming a train driver. As he reaches for his dreams throughout his life, he will face some challenges due to his pediatric brain tumor diagnosis. 

At just 28 months old, Matthew was diagnosed with a high-grade brainstem glioma– an aggressive brain tumor he still battles to this day. His dreams may look different than his brothers and sisters, but his family embraces Matthew’s needs and tackles the challenges together, no matter what. 

“It’s a hard balancing act because we never want to limit our own kid with what they want and what their dreams are, but we also want to balance it with the reality of the situation. And that’s a tough balance. This entire journey is a constant balancing act of trying to balance his siblings’ wants and dreams with Matthew’s and our own,” says Matthew’s father, Jayson. 

The biggest impact his tumor has on his life is difficulties with balance. Being late to start walking due to balance issues as a toddler was one of the warning signs his parents noticed that eventually led to him getting an MRI. He still struggles today with balance due to his tumor location and size, along with other symptoms that vary depending on the current size of the tumor. 

Years after Matthew’s initial diagnosis, his dad still remembers the relief of discovering PBTF’s Butterfly Fund– a program that provides emergency financial assistance to families of children in treatment for out-of-pocket expenses like transportation, groceries, professional counseling, and more. 

“When we were put into a tough position where I couldn’t provide, I remember PBTF from the start of our journey helped us with gas and food through gift cards. As a provider it was critical for me to know that we would be able to get to the hospital and have food to eat,” says Jayson. 

Matthew’s mother Dawn also shares that the community of support they found through the Pediatric Brain Tumor Foundation made their family feel less isolated, as they are in a position that can be hard to relate to if you haven’t gone through a pediatric brain tumor journey. While they have enjoyed the experience of meeting families through attending PBTF’s Starry Night and other events over the years, they are looking forward to new opportunities to meet and converse with other families who are on a long-term survivorship journey and understand their unique position. 

“At the beginning of your cancer journey, you have everyone. You have so much support which is magical and horrible. But if you’re lucky enough to be eight years into your journey, you have nothing. We are desperate to meet other families who have been in our situation for the long term,” says Dawn. 

Living with a brain tumor is a chronic, lifelong journey, and families like Matthew’s need the Pediatric Brain Tumor Foundation and your compassion every step of the way. Join us as we seek to raise $365,000 before the end of 2022 to continue to provide welcoming, care-centered support for families as their child goes through treatment and they transition into survivorship. Donate today at 

Colby: Families Connecting through the Starry Night Community

On November 9, 2009, Perry received the best birthday present he could imagine. His selfless, caring son Colby was born. 

Colby loved Pokémon, BattleBots, LEGOs, music, and most importantly his sisters. He was a master of Chinese checkers and was always ready with one-liners, bad puns, and dad jokes. 

On April 25, 2021, Colby was diagnosed with diffuse midline glioma with a H3K27M mutation. He received a ventriculoperitoneal shunt and shortly afterwards underwent chemotherapy and radiation treatment. The initial treatment was more effective than predicted and the tumor was stable for about six months. In February 2022 doctors found disease progression and Colby started receiving a different type of treatment at the Children’s Hospital of the King’s Daughters in Norfolk, Virginia. The treatment slowed the growth for a couple months, but eventually it could not stop it. 

Shortly before 6am on June 4, 2022, Colby passed away. He was only with his family for 12 short years, but his impact was felt by everyone who met him. 

Colby and his family were very close, and in a way, his father shares, the diagnosis made them even closer. It made them appreciate their lives and time together. For Colby’s memorial they had everyone wear a funny graphic tee, something Colby was known for, and had all his favorite things including LEGOs, ice cream, and chicken nuggets. Everyone who attended wrote down their best or worst puns and dad jokes in a book in honor of Colby.  

Having the support of the Pediatric Brain Tumor Foundation throughout Colby’s journey helped their family realize that no matter how hard things are, you’re never alone through a brain tumor diagnosis. They found comfort knowing there are others devoting their lives to fighting brain cancer and working towards a cure. 

“Once you hear your child’s diagnosis, everything changes,” shares Perry. “It changes your entire life forever. For me, life became filled with ‘what if’ questions about our options and treatments when in reality, at least with our diagnosis, there were little to no options because there is no cure.”  

In September Colby’s family participated in the Starry Night 51-mile Challenge in honor of his journey and to raise awareness for others facing this disease. In addition to walking, Perry made a Starry Night-themed skateboard and dedicated it to everyone involved in their journey, those walking in September, and those who have been diagnosed. At the end of the challenge, he worked with our family support team to donate the skateboard to a young adult survivor. 

Navigating life after a child’s brain tumor diagnosis can be overwhelming, and it can be difficult to meet other people who have experienced what you and your family are going through. The Starry Night Community on Facebook provides a virtual community for anyone impacted by a pediatric brain tumor diagnosis. Join the community here. 

Lilli: A Princess in Action

Today on National Princess Day, we’re highlighting a reallife princess in action. 

One day four-year-old Lilli went to bed peacefully and woke up the next morning seeing double with her left eye severely crossed. Her mother Courtney called the ophthalmologist right away and they said she probably just needed new glasses and scheduled an appointment for a few days later. In the meantime, Courtney followed up with Lilli’s pediatrician and they sent her in for an MRI. 

The MRI showed she had an optic nerve glioma, a benign tumor that was located between her eyeball and brain. At first, her family did not know if it would need to be treated or kept on a watch-and-wait protocol. However, they later found out the tumor was growing quickly and Lilli would need chemotherapy to stop its growth. If left untreated, her tumor could cause blindness in her left eye. 

When she began her year of weekly chemotherapy treatments in February 2019, Lilli chose to wear a yellow Belle costume from Beauty and the Beast to her first appointment. She was greeted with smiles and excitement. 

For 52 weeks, Lilli’s princess dresses became her suit of armor, giving her the courage to face treatments and frequent trips to UPMC Children’s Hospital of Pittsburgh. 

The night before each appointment, Lilli would spend time picking out the perfect dress to wear. She never repeated an outfit, which made every week a surprise for the hospital’s care team. Lilli’s dresses were her way to share “princess joy” with everyone, transforming a very tough situation into something that her family could look forward to. 

“She looked forward to going to chemo which is crazy,” says Courtney. “Every Thursday night we would pick out a dress and when we would get ready for her appointment in the morning, she was excited to go because she couldn’t wait to show off her dress. She couldn’t wait to see what everybody would say. She would request the IV polls with flat bottoms so she could stand on them and ride around the hall. She wanted to do the princess wave, so it really turned into a positive experience for her.” 

Through her bravery and compassion for other kids like her, Lilli inspired the formation of Costumes for Courage, which gifts costumes, ranging from princesses to superheroes, to children receiving treatment for cancer and other chronic illnesses. They hope that, just like it did for Lilli, a costume gives a child that extra bit of strength and courage when they need it most. 

In addition, Lilli’s family found community within the Pediatric Brain Tumor Foundation and our annual Ride for Kids program. The ability to connect with other families who have walked a similar journey makes the annual motorcycle ride so special for the entire family, but especially Courtney who appreciates having a space to meet and talk with other parents.  

“It’s nice to have this family of people who have gone through it, know your struggles, and can connect you with resources. People that I can reach out to and say, ‘Hey, I need some help here.'” 

If you or a family you know are facing a pediatric brain tumor, you’re not alone. PBTF is here to help with resources and community support that address every family member’s needs. Contact us today at [email protected] and 800–253–6530 or visit to learn more. 

Jakob: Finding his Personal Meaning in Life

Jakob’s brain tumor story started in 5th grade when he started developing troubling symptoms such as hand tremors, frequent headaches, weakness, and nausea. Over the course of a year and a half, the symptoms became exponentially worse. He would come home from school, lay down on the couch, and wouldn’t be able to get up for the rest of the night. The tremors became so severe that he lost the ability to write and even drink a glass of water by himself. He knew something was wrong. 

On March 21, 2015, Jakob and his parents went to the local children’s hospital in Ottawa, Canada to get an MRI to investigate the cause of his symptoms. His doctor found a golf-ball sized brain tumor, and he was diagnosed with low-grade astrocytoma. 

While the tumor was considered inoperable, an invasive (but vital) medical procedure was able to relieve many of his symptoms.Through that procedure and accompanying biopsy, the doctors determined the tumor was non-malignant. Throughout the process, Jakob was able to stay positive and optimistic.

“Immediately after I was diagnosed, I had two very conflicting thoughts: My life is forever changed; this diagnosis – this course of life — is entirely different than what I envisioned. But also, I finally know what I’m up against. I can tackle this,” said Jakob. 

The next year and a half was a flurry of frequent appointments. Jakob went through a 70-week chemotherapy protocol every Friday, in order to allow a weekend of recovery before school on Monday. His resiliency was immediately apparent. After his first treatment in May 2015, Jakob and his father participated in a 3-mile fundraising run for cancer research – and his father completed the run through tears of pride and joy for his son’s strength and perseverance.

Jakob finished chemo in September 2016, and he continues to have regular MRIs to check on the tumor. The tumor is still there; however, it is stable and the time between his MRIs has grown larger and larger. His prognosis looks very good, and Jakob is able to go to school, spend time with friends, and share his story and experiences with others.

Throughout treatment, Jakob made an effort to continue doing what he loved, like playing hockey and ultimate frisbee — a passion he shares with his entire family. He wants to live life to the fullest every day and continue to do what he loves despite the brain tumor. He’s proud of himself that he was able to continue living life to the fullest through difficult times. 

Jakob has been able to share his story by speaking at events at schools, corporate and charity events, and various businesses to spread awareness and fundraise for pediatric brain tumor research and families impacted by this disease. It has been incredibly meaningful for him to share his story and inspire others. He knows people are still going through their own journeys like what he went through years ago, and he’s honored to share the lessons he learned and bring positivity to brighten others’ days.  

“There was one instance where I spoke at a school and we got an email a few days later from a mom saying I spoke at her seven-year-old son’s school. He was so motivated that he went around his neighborhood that night, door to door, collecting change from each of his neighbors. He ended up with $21.83, and he was so proud. That story alone has kept me going since then.” 

Jakob shared that his diagnosis gave him his personal meaning in life of being able to share, support, and give back where he can. It streamlined his goals and gave him a clearer picture of what he wants out of life. In the future, he wants to bring the lessons he learned in childhood into his adult life to continue to help and support people where he can. 

He recently started his 2nd year of Business School at one of the local universities, and has been continuing to share his messages of hope, support and resiliency.

The Pediatric Brain Tumor Foundation is committed to leading the way toward a future without childhood brain tumors. You can help us fund the most promising research, direct resources to families in need, and advocate for better treatments and access to care by supporting the Pediatric Brain Tumor Foundation this Giving Tuesday. Save the date of November 29 and sign up to receive updates about how you can make a difference: or make your Giving Tuesday gift early at

The Last Birthday: A Father and Advocate Shares the Personal Impact of Pediatric Brain Cancer

Mike Henry, the Pediatric Brain Tumor Foundation’s Director of Advocacy, understands first-hand the devastating impact of pediatric brain cancer and why urgent and substantial action is needed to address this growing public health crisis. In 2019, his daughter Blair “BB” Henry celebrated her final birthday before passing away from brain cancer. She was three years old. He shares “BB” and his family’s story in this essay. 

I stood by the bouncy castle in the backyard with an unfocused stare, trying to muster the energy to start my errands. We had been discharged for just a few days. Our attention had been trained on my daughter’s blood results. Would her immunity levels be high enough for us to celebrate? Her last birthday was here.  

The previous month was hellish. Her biopsy left half of her body mostly limp. The harsh chemotherapy drugs decimated her tiny body. All her hair fell out over what seemed like a few hours. We had sleepless nights watching her chest for active breathing because her throat had almost swollen shut from the mucositis. Hospital equipment beeps became the soundtrack of every waking second. The traumatic moments compounded until it all felt normal.  

That all feels so unnecessary now. The tumor that was wrapped around her brain stem put that treatment plan in motion before we realized the reality of her future. Our care team knew before we did. Her 40-year veteran neuro-oncologist burst into tears while talking about her deteriorating health. They gently helped guide our decision to transition to palliative care. They gifted us good months of memory-making.  

On the precipice of three years old and gearing up for her final birthday. This was supposed to be the first birthday party she remembered. A memory you look back on with fondness. Our definition of memorable had changed. Sadness threatened to derail event planning at any second, but we pushed ahead.  

The day saw friends, family and supporters trickle through. There were games, an ice cream truck, and an outdoor movie screening. For the first time in weeks, she wasn’t a cancer patient. She was a kid who couldn’t wait to eat cake with her friends and family. There were flickering moments of what our life was like pre-diagnosis. For weeks we had small moments just like this. These were the snapshots most people saw. Laughter and fun. Trips to fun places, surrounded by our inner circle.  

Most didn’t see her decline. They weren’t included in the daily conversations about the strength of her morphine doses. They didn’t see the steroids bloat her entire body to the point of near immobilization. They didn’t hear her voice start to give out. That was the first sign. We knew her tumor would grow until there wasn’t any room left. It was like waiting around to get hit by an oncoming truck. Eventually, she would lose consciousness, her body would shut down her ability to breathe, and we would have to watch her suffocate for several hours until she passed.  

Many people know parents like me who obsess over what ailed their child. It can feel a bit much to folks who haven’t experienced those awful moments. When we only allow the world to see the good moments, it can be hard to understand why we can’t stop talking about the bad. The horrors of childhood cancer create the urgency we feel. 

In September, a comprehensive report published by the Central Brain Tumor Registry of the United States and funded by the Pediatric Brain Tumor Foundation found that pediatric brain cancer is now the most commonly diagnosed childhood cancer in the United States. It is also the deadliest and only getting worse, while adult brain cancer patients are experiencing a decline in the incidence of diagnosis and mortality rates.  

Pediatric brain cancer trends are moving in the opposite direction of those for adults because childhood cancer does not receive the same level of attention or financial commitment as adult cancers. The lack of focus and funding means slow progress for the more than 120 types of pediatric brain tumors in need of treatment advancements.   

Since my daughter’s passing, I have met some of the most remarkable people in the world. They are happy warriors who continue to carry their child’s memory or compassionate caregivers entrenched in the battle. They are inspiring survivors dealing with complex side effects or siblings advocating for their brothers and sisters. We are all working to change the outcome for families like ours. It’s time to make childhood brain cancer a priority. Every kid deserves their next birthday.  

The Pediatric Brain Tumor Foundation is committed to leading the way toward a better future for kids, and we need patient advocacy organizations, pharmaceutical companies, researchers, and caring individuals like you to walk alongside us as we address pediatric brain cancer’s impact. You can make your voice heard by advocating for families in your local community and across the country. Sign up now to be an advocate with PBTF: