Adita: Facing the “Silent Ghost”
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 curethekids.org/family-resources 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 www.curethekids.org/holiday2022. If 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 www.curethekids.org/holiday2022.
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.
The skateboard was gifted to a fellow Starry Night Community member, Jessica. As a pediatric brain tumor survivor, she understands how challenging the diagnosis is and how important it is that we find a cure so that children not only survive, but also thrive.
“When I found out another community member wanted to donate this skateboard to me, it really touched my heart. While I do love both Starry Night and skateboarding, this board holds a lot of sentimental value so it will not be ridden. I’m going to keep it on display at home that will serve as a reminder of the memories made, the community I’ve come to call family, and why I continue advocating for a cure,” says Jessica.
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 real–life 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 curethekids.org/family-resources to learn more.
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.
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: http://www.curethekids.org/stay-connected/ or make your Giving Tuesday gift early at www.curethekids.org/givingtuesday.
Anthony: Making a Difference One Walk at a Time
Eight-year-old Anthony is making a difference this September for Childhood Cancer Awareness Month by walking in honor of children like him who have been diagnosed with a brain tumor.
Anthony’s journey with a pediatric brain tumor started when he was only 5 months old when he was diagnosed with a choroid plexus papilloma brain tumor. He was an extremely happy and smiley child. When his joyful personality suddenly changed, his parents knew something was wrong.
The change in his personality is what alerted his parents to the idea that he was suffering and his continued inability to smile forced his parents to become fierce advocates, which led to his diagnosis.
Eight years later, Anthony is now tumor-free and back to his happy, smiley self. Although there are difficult moments of survivorship, Anthony’s outlook on life carries his family through difficult times. He sincerely likes to help people and frequently engages in community activities that involve giving back to or helping those in need.
Anthony’s own struggles make him empathetic to others. He has been around a lot of doctors, nurses, therapists, and specialists who have molded him to have a unique compassion for others who need some extra cheer.
This month Anthony and his family are participating in our Starry Night Community’s 51–Mile Walk Challenge. Anthony has dedicated many of his walks to individuals at different points of their journey and those who have supported him along the way.
“White lanterns are for everyone who supported us like my doctors, therapist, and teachers, my mom and dad, and all of you,” said Anthony during one of his walks.
Through the month of September, he has taken every opportunity to get in mileage for the challenge. Even on busy days when he was at the hospital or preparing for a baseball game, he took the time to go on a walk.
Anthony had others join him for some of his miles, including his forever friend and supporter, his Kindergarten teacher. Over 22 miles in, she joined him for a walk on the beach.
Every day is not easy, but Anthony pushed through in order to raise awareness and funds for a cause close to his heart.
“I am out walking on this rainy day. Not going to lie, I really didn’t want to walk today, but today I am walking for the Eternal Stars. Our family lights blue lanterns for Starry Night because they’re shining down from heaven,” said Anthony.
Anthony has already reached his goal of raising $800 in honor of being diagnosed eight years ago, but he will continue to walk and fundraise throughout the remainder of Childhood Cancer Awareness Month.
Join our Starry Night Community’s 51–Mile Challenge on Facebook to walk alongside children, teens and survivors like Anthony and connect with other pediatric brain tumor families.
Martha: Glowing Gold for Childhood Cancer Awareness Month
Martha von Dietman was born in the summer of 2017. The fourth child in her family, she was the fastest to walk and couldn’t wait to keep up with her siblings. In hindsight, it’s almost as if she knew her time was limited and she tried to get the most out of it.
Martha could spend the whole day at the beach eating and playing with sand, building castles, and searching for shells. She was constantly exploring her environment and loved animals, especially owls. But she could also quietly look at books or serve coffee and cake out of her toy kitchen.
A few months before her second birthday, Martha developed a cold that wouldn’t go away and started walking unsteadily. Her parents took her to the emergency room and a neurologist admitted her to the hospital when her symptoms worsened a week later. An MRI showed a diffuse mass in Martha’s brain stem, which doctors initially misdiagnosed as DIPG, an incurable tumor with an average 9- to 15-month survival.
The diagnosis changed the von Dietmans’ world. Martha’s health declined rapidly after learning of the tumor, but a shunt, high doses of steroids, and radiation saved her life. A biopsy and debulking surgery offered a glimmer of hope when it revealed her tumor was an embryonal tumor with multilayered rosettes (ETMR). Although this tumor type is also highly aggressive with low survival rates, Martha recovered quickly from surgery and started chemotherapy just days later with some initial success.
In total, Martha underwent 7 surgeries including open brain surgery and 46 sessions of radiation. She was sedated over 60 times, received countless blood transfusions, and a dozen lumbar punctures or intraventricular injections.
And yet, Martha never gave up. After radiation, she learned how to walk again. When she lost that capability after surgery, she learned to crawl and stand up again. Martha fought very hard, but the tumor was too aggressive. The tumor relapsed and she had to stop chemo. New trials showed no success.
Re-irradiation gave Martha a couple more weeks, and she was able to have one last trip to the beach with her family. Three months before her third birthday, she passed away peacefully at home in her mother’s arms surrounded by family.
The von Dietmans continue to honor Martha’s memory by raising awareness and supporting other families facing a child’s brain cancer diagnosis. They recently became parent mentors in the Pediatric Brain Tumor Foundation’s peer-to-peer program and have partnered with the NASCAR Hall of Fame and the city of Charlotte, NC for Childhood Cancer Awareness Month to help advocate for families in their local community.
If you’re in Charlotte on September 1, look to the skyline when Uptown Charlotte will glow gold in honor of Martha and every child diagnosed with this terrible disease. You can also join the PBTF community in standing with families throughout September by visiting curethekids.org/MYPBTF and clicking on “Recognize Childhood Cancer Awareness Month.”
Sign up for our 30 Days to Change a Life challenge and your support will provide patients, parents, siblings and survivors with the life-changing resources they need and fuel a 12x return on new scientific research. Help us make a world without childhood brain tumors possible — a world where children and families like the von Dietmans can thrive.
Makayln: Finding Strength in Each Other
At a routine eye exam in January 2022, Makayln’s optometrist noticed she had swollen optic nerves. Her mother Nikkie mentioned other recent unexplained symptoms like vomiting and headaches to her optometrist. After consulting with her pediatrician, both doctors recommended she go to Oklahoma Children’s Hospital for further testing.
The family packed a bag and took the two-hour trip to Oklahoma City. They sat in the waiting room for over four hours before she was seen and routinely tested for COVID-19. Although she was asymptomatic, she tested positive. This added a layer of complexity to Makayln’s experience in the hospital and her ability to see family members. They were very thankful the hospital allowed her mother and grandfather to be with her so she wasn’t alone.
After a CAT scan and other tests, Makayln’s doctor found a mass in the cerebellum of her brain. She was diagnosed with juvenile pilocytic astrocytoma at age 15.
Days later she had a 7-hour surgery that removed the tumor. Makayln will need reoccurring scans to make sure there is no regrowth, but overall the surgery went well and she has few lingering symptoms. Although the thought of having a brain tumor was scary to her family, they remain very optimistic about her future.
Makayln stayed strong through her journey and she wouldn’t describe herself as nervous or sad about the process. She shared that “Even though brain tumors can be scary and dangerous, they can also bring a family together.”
Her brain tumor diagnosis pulled her family together in a different way and they are all stronger because of it. Her diagnosis and surgery happened so fast that they had little time to dwell, but they all found strength in each other to get through the fear of the unknown.
Although it was nerve-wracking to go back to high school after surgery, Makayln’s friends helped her through the transition and made her comfortable and confident returning. Her family was worried that she would be bullied, but luckily that was not the case. Less than a month after her diagnosis, she went back to school and got back into her interests of drawing, painting, and pottery. Her art was even on display at an exhibit in Tulsa, Oklahoma just months after diagnosis.
Nikkie discovered the Pediatric Brain Tumor Foundation through Facebook and found comfort hearing other families’ stories who have gone through similar journeys. These family stories and PBTF’s resources were also helpful for her while their family educated themselves on the intricacies of a pediatric brain tumor diagnosis.
“When I was in a panic trying to learn anything and everything about brain tumors, PBTF’s Facebook page was so helpful. Google can only tell you so much, so it is nice to hear about real families who have a similar diagnosis as Makayln. PBTF’s Facebook page and resources gave us so much comfort.”
When your child is diagnosed with a brain tumor, you may feel overwhelmed and alone. The Pediatric Brain Tumor Foundation offers a community for you and your family every step of the way. Visit www.curethekids.org/family-resources to explore the resources we offer or fill out our Family Connection Form at https://curethekids.org/connect-with-us to connect with our team and learn more about our community of support.
Christian: Embracing the “New Normal” Following His Brain Tumor Treatment
In 2015, at the age of 15, Christian was diagnosed with a Pineal Parenchymal Tumor of Intermediate Differentiation (PPTID), a very rare brain tumor. At the time he was only the sixth reported case since 2000. Like other families who receive the devastating news that their child has cancer, his family suddenly found themselves in a whirlwind of information, appointments, and heartbreaking discussions about the future.
“For six months our son went through treatment that consisted of chemotherapy, resection surgery and radiation. He gave up his normal teenage life to fight for his life. Words can’t explain what it is like as a parent to watch your child go through cancer. You are helpless. As much as you want to trade places, you can’t. You put on your brave face and dig deep for strength you didn’t know you had,” said Christian’s mother Shanna.
Because of the rarity of Christian’s tumor, there weren’t any case studies to turn to for prognosis. Doctors decided to treat it aggressively to attempt to get rid of the tumor.
His family didn’t know if he would have a normal life after treatment, but Christian faced it head-on with strength and courage. He didn’t let it get him down and took every opportunity to use his story to encourage anyone facing a tough time.
Christian’s family is grateful his story has a happy ending, something they know others with a pediatric brain tumor will not attain. He’s been able to achieve two things doctors weren’t sure he would ever be able to do—celebrate six years of being cancer-free and finish college.
“He continues to face each hurdle with determination and is learning not to let his battle with cancer define him but to remind him that if he can beat cancer, he can do anything.”
Even though Christian is currently cancer-free, it is still part of his family’s lives. There are daily reminders with physical and mental struggles, and he will continue to have follow-up visits for another 5-10 years. They struggle with “scanxiety” when MRIs are near, and tears are still shed. Christian still has everyday struggles including difficulties processing information, anxiety, and PTSD. His entire family is still fighting the aftermath every day and getting used to their “new normal.”
“Six years later, we are still trying to discern what things Christian deals with because of treatment. Some things are obvious, but others are not. He deals with short-term memory issues, processing issues, vision issues, and fatigue. There doesn’t seem to be an answer to help with these because when you’ve had treatment in your brain, things are compromised and can’t really be repaired. You have to figure out how to live with them.”
Shanna came across PBTF on Facebook shortly after Christian was diagnosed and she loved having an online space where it is clear their family isn’t alone. In addition to the online community at PBTF, Christian’s family came in contact with six other families who have children that have received a PPTID diagnosis. They all were able to compare notes and come together to bring more awareness to this rare type of brain tumor.
If your child has been diagnosed with a brain tumor, PBTF offers opportunities year-round to meet other families, survivors, and supporters. Join our email list to stay up-to-date about PBTF resources and events in your community: www.curethekids.org/stay-connected. If you know a family that needs help, tell them about PBTF. We’re always here to help.
Jett: A Community Coming Together Following a Pilocytic Astrocytoma Diagnosis
When Jett was four years old his parents noticed a slight tremor in his left hand. His mother immediately knew something was wrong. Jett’s parents, Christina and Jude, watched the tremor for the next couple weeks as it progressed to a clenched hand, then a clenched arm.
Christina and Jude took Jett to his pediatrician, who then called for a neurological consultation. Minutes later they were told to get in the car and immediately go see the pediatric neurologist. In a five-minute diagnosis, the pediatric neurologist said Jett either had a stroke or a brain tumor. An MRI the next day confirmed there was a life-threatening brain tumor deep in his brain and he needed emergency surgery.
In a matter of days, their lives went from pediatrician appointment to a craniotomy and brain tumor resection and living in a hospital for three months of rehabilitation.
Jett was diagnosed with pilocytic astrocytoma, a type of tumor that tends to be benign; however, due to its shape, it often wraps around neurological structures and is difficult to resect without damaging those areas of the brain.
Jett was left paralyzed on the left side of his body and lost the left field of vision of both eyes. He’s still in ongoing physical and occupational therapy programs as there have been many cognitive and emotional consequences of his diagnosis. Yet, Jett is ambulatory—he can walk, run, and ride a skateboard. He won’t be able to drive a car or play sports, but he is currently managing to be in school for full days.
He doesn’t like to use a cane or anything that would identify him as visually impaired, so he often has collisions throughout the day.
“I really hope that at some point, Jett comes to appreciate the things he now hides as disabilities and tries to compensate for as deficits from the surgery, that he comes to realize that those are the areas of his greatest strength. I see him now as a tween, starting to try to conform and fit in. His left hand didn’t fully recover, so he probably won’t have use of his left hand and he hides it, like in a pocket of a hoodie. And with his blindness, not using the cane is really all about not wanting people to know about a vision impairment,” said Christina.
For Christina and Jude, it was the shock of the diagnosis that was the hardest. They were living their lives with a healthy child and suddenly they received devastating news that rearranged their concept of reality. They will never forget the moment their doctor told them they found a mass deep inside Jett’s brain while waiting for Jett to wake up from anesthesia. It left psychological trauma that has continued for years where they couldn’t find peace again and couldn’t return to normal stability.
Their family is thankful for their strong community of family and friends from every area of their lives. Their friends rallied around them instantly and created a web of support on every level. While Jude and Christina had to leave their typical lives, their community took care of their lawn, dogs, and house. They fed them while they were in the hospital, often feeding the nursing staff that took care of Jett as well. Their community carried them through their journey physically and emotionally.
In addition to having a supportive community at home, Christina shared that having PBTF was a lifeline to be able to connect to other parents who simply and immediately understand the complexity and seriousness of what they were going through.
“Starting with the mentorship program and having a one-on-one with somebody who can be present and answer whatever questions come up is a really important access point. Instead of a whole bunch of information getting thrown at you, there’s one person who can field the questions that are most specific to your family and help you discern places where you can plug into the organization. I can imagine it could be overwhelming to somebody who doesn’t even know where to start.”
To learn more about PBTF’s peer-to-peer mentoring program and other family support resources, visit www.curethekids.org/family-resources