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 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 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. It started 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.” 

PBTF is committed to making pediatric brain cancer a national health priority, but we can’t do it alone. Sign up to be an advocate and make your voice heard for children like Ava. To learn more about her journey, follow @avastrong17 on Instagram and Facebook. 

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 51Mile 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 51Mile 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 “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 she educated herself on the intricacies of a 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.”

Stay connected with PBTF on FacebookInstagramTwitter, and LinkedIn to hear more family stories and to learn more about available resources, webinars, and events.

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

Nicholas: Holding On to Family Memories

In 2018, Christina and Selvyn noticed their son Nicholas lost a bit of weight and started vomiting often. Christina took him to the emergency room, and they prescribed nausea pills and sent Nicholas home. Nothing changed, so they went back to get answers.

After a CT scan and an MRI, doctors found a brain tumor on Nicholas’ 10th birthday—July 1, 2018.

After diagnosis, Nicholas had surgery in his home state of Georgia to remove the tumor. Then Christina and Nicholas went to Florida for radiation and proton therapy. His tumor initially responded to treatment, but came back exactly a year later. Nicholas went through another operation, chemotherapy, and radiation, but the doctors were unable to remove all of it. His family enrolled him in a clinical trial in Georgia, but the tumor continued to grow. After attempts to receive surgery in Philadelphia, they traveled to Texas and a doctor was able to remove some but not all of the tumor due to the location near the spinal cord. The tumor, unfortunately, continued to grow.

On December 3, 2020, Nicholas passed away. Although his family’s journey did not end as they hoped, they were grateful the surgery in Texas relieved his pain.

The family separation and financial strain was very difficult for Nicholas’ entire family. While Christina traveled with Nicholas, Selvyn and their daughter Melissa had to stay in Georgia to work and attend school. The family was used to a two-income household; however, Christina stopped working in order to care for Nicholas during his treatment.

Bills kept coming no matter what, and treatment costs depended on insurance approvals. In addition, their travel costs from hospital to hospital added up, and the family spent a great amount of money on gas and travel. The Pediatric Brain Tumor Foundation helped relieve some of the family’s financial strain through our emergency assistance Butterfly Fund.

“When we were still fighting, PBTF helped us a lot financially with all of our travels and everything we had to do. Without them, we probably wouldn’t have been able to go to Texas and get that surgery, and who knows how much pain he could have been in when he passed,” said Christina.

Their family continues moving forward by holding onto memories of Nicholas and finding strength in his sister, Melissa. They often reminisce on the good times they had as a family, like when they went to Universal Studios. Melissa and Nicholas loved the Harry Potter rides and the interactive wands within the park.

PBTF was able to give Nicholas and his family other memories by connecting them with the pediatric brain tumor community. They enjoyed attending local holiday parties and seeing Ride for Kids motorcyclists ride by their house – providing a family of people who understood what Nicholas, his parents and sister were going through and helping them figure out the path to take throughout their journey.

“I would tell a newly diagnosed family you aren’t alone and that PBTF really helps you make memories that you can hold on to. Those are memories we still keep, and we still watch the videos of the motorcycle ride. Those are things that we really hold in our hearts. PBTF is there for you, so you are not alone and you create a whole other family.”

PBTF offers resources, including financial assistance, to help families throughout their pediatric brain tumor journey. To stay connected and learn more about family resources, visit: curethekids.org/stay-connected.

Grace Wethor: Writing her Next Chapter Following a Brain Tumor Diagnosis

Grace Wethor’s journey with a brain tumor began when she was 13 years old. She spent nine months in and out of doctor’s offices since she consistently felt sick and suffered from headaches. No one could figure out what was wrong. 

A pediatrician said she was making it up — that she was depressed and wanted attention. After going to many specialists in the Minneapolis area, she was eventually diagnosed with a brain stem glioma on January 9, 2015.  

She was told the same day that the tumor was inoperable. Her family was shocked, assuming most tumors could be taken out. In addition, standard chemotherapy and radiation treatment would not help because of the tumor’s location inside the blood brain barrier. She was sent home with no next steps and an 8% chance of surviving six months. 

Seven years later, Grace is twenty years old and continues to fight while working towards her dreams every single day.  

“After being diagnosed, I had a completely different perspective on time and still have a very weird relationship with time. I think when you’re told you have a very little amount of it, you become hyper-aware of every day. Suddenly it seems like you have a lot more and you want to do a lot more. So I started taking my dreams more as reality because if I was already being told I was rare, if I was already surviving very low percentages, I might as well see what other odds I can beat,” said Grace. 

Her next odd to beat was striving for a career many people would not attempt to pursue. She always wanted to be an actress, create films, and be a director; however, it was never something she realistically thought she would be able to do. She moved to Los Angeles once she was done with school to pursue her dream. 

Grace’s mother, Angela, was an incredible advocate throughout her journey — finding things Grace would love to do while keeping her safe. Grace had to reevaluate the activities she participated in during her childhood as many things were no longer safe for her. Before diagnosis, she was a dancer, figure skater, and aerial artist in a youth performing arts circus. However, those activities were no longer options for her. Angela brought Grace fashion magazines and signed her up for online classes she was interested in, which developed her interest in the fashion industry. 

Grace’s love of fashion is how she originally learned about the Pediatric Brain Tumor Foundation. Her mom discovered a fashion show fundraiser in Atlanta and thought it would be a great way to combine Grace’s interests. Before this event, Grace had never met another family who had faced a brain tumor. It helped her find a community after her diagnosis and connect with others who had similar stories. This community was vital for Grace as her journey shifted and she became a long-term survivor. 

“You don’t have to explain to other patients and survivors how you’re feeling. You don’t have to explain to them what your day looks like. They get it and they have empathy without having to use words. And to have that connection with people and to have a foundation that allows us to have those connections and find other people like us, I think that is extremely valuable. It can change a family’s fight and give them hope.” 

Although it was difficult for Grace to share her story at first, she urges everyone to try to look for a speck of light in the darkness and share their story when they are ready. Sharing her story with others opened up an extremely helpful and supportive community. 

Grace continues to use her platform as an award-winning actress, director, and best-selling author to advocate for children who are facing a brain tumor diagnosis. In 2018 she created a book called “You’re So Lucky” that shares stories of fourteen brain tumor survivors. In 2021, she expanded on her journey, caught up with some of these other survivors, and talked about her work with Congress on brain cancer legislation. 

As a pediatric brain tumor advocate, Grace loves that PBTF is there to fight alongside families throughout their journey. 

“PBTF has impacted my family through being a silent energy that lives in our everyday lives. Knowing that there are people fighting for us even on days when we don’t want to get out of bed or don’t have much hope and are exhausted. Knowing that there are others whose job it is to work every single day for kids like me and for our community. Having that energy, even if it’s in the back of our mind, is life-changing and comforting. It dissolves a lot of anxiety that comes with being a family facing this illness.” 

No matter where you are in your journey, PBTF is here to support you. Stay connected with us for the latest news on upcoming initiatives and patient family resources: www.curethekids.org/stay-connected 

Lili: Using Her Story to Spread Awareness for Pediatric Brain Tumors

Lili was an active, healthy child who was involved in many sports and other activities growing up. She was often called the “mayor of her school” in Georgia because she was friends with everybody, and everyone knew her. 

Her life changed on September 10, 2019, when she suddenly had a seizure at school. She never had one before, so her parents Mike and Erin took her to the emergency room to find the cause of her sudden seizure.  

A CT scan showed there was a mass or a lesion on her brain, but doctors could not get a clear look. After an MRI, a neurosurgeon told the family that it looked like a tumor and they needed to do a biopsy to find out more details. After a few weeks and two biopsies, it was confirmed Lili had grade three anaplastic astrocytoma. 

At that time, doctors thought surgery would be too risky. Lili had 30 treatments of proton radiation that killed most of the tumor but left a lot of necrotic tissue that sat in her brain and caused swelling and migraines.  

“She had to be in the dark and regular painkillers didn’t work. It’s just terrible. So we kept asking if we could at least go in there and get the dead stuff out and give her some extra area to swell into so she’s not in awful pain. It was too risky, and she was on steroids for forever. She got little stretch marks on her arms because she gained a lot of weight from the steroids and Cushing syndrome,” said Erin. 

Since there is no reliable standard of care for pediatric brain tumor patients, Lili’s parents had to do their own research to find additional treatment options.

They discovered a study in New York for an experimental treatment targeting a specific protein found in glioblastoma tumors. It showed positive results in adults, but children were not included in the trial. Her parents petitioned the FDA, and Lili became the first child to receive this treatment through a compassionate care exemption. Lili’s parents also met another patient family in a Facebook support group that connected them with a neurosurgeon in Texas who did a debulking surgery to remove more of the tumor.  

Lili found the strength to endure her journey through her friends and family. Although she was not able to see loved ones in person often due to the COVID-19 pandemic, she loved to use her iPad to connect with others. She constantly video chatted with people like her aunt Mickey who kept her company every morning. 

When Lili’s tumor started to progress, she had to stop the clinical trial in New York. Her family tried two more trials, but progression remained aggressive. On Mother’s Day of this year, Lili passed away after a two-and-a-half-year fight.

“We feel that if people are put here for a reason, then her reason was to help bring awareness to pediatric brain tumors, and help advance the effort towards finding a cure,” shared her father Mike. “Our Warrior Princess fought with everything she had and turned her diagnosis into a mission to live, laugh, and love the things that were the most important to her. Sharing her battle with the world and raising awareness in the fight against pediatric brain tumors was certainly one of them.” 

Although her family’s hearts are filled with sorrow, they are also filled with warmth knowing that her journey will give hope to other children in her situation. A consortium of 20 children’s hospitals will now receive and be able to treat their pediatric brain tumor patients with the experimental immunotherapy that Lili paved the way to get approved.    

The Pediatric Brain Tumor Foundation will continue to spread awareness for families like Lili’s, and you can join us in our fight. Sign up to learn more about how you can advocate for better treatment options: http://www.curethekids.org/stay-connected.