The post Two Journeys. One Mission. appeared first on Children's Brain Tumor Foundation.
]]>Every child and family facing a pediatric brain or spinal cord tumor experiences a different journey.
Some are learning how to move forward after treatment. Others are finding ways to give back so another family never has to face this path alone.
What connects every story is the same thing:
A community that refuses to let families walk this journey by themselves.
This month, we’re honored to introduce two remarkable women whose stories reflect the strength, resilience, and hope found throughout the Children’s Brain Tumor Foundation community.
One is a survivor. One is a mother.
Both are living proof of what hope looks like when people come together.
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Finding a Purpose Through Every Mile
Anna Durso | Brain Tumor Survivor & Team CBTF Endurance Runner
The day after her 21st birthday, Anna Durso underwent a craniotomy to remove a brain tumor – an experience that forever changed her perspective on life.
Today, Anna is transforming that experience into purpose by running the Bank of America Chicago Marathon as a member of CBTF’s Endurance Team, raising funds to support children and families affected by pediatric brain and spinal cord tumors. When choosing a charity, her decision was immediate.
“This was the only charity I reached out to. I didn’t want to run for anyone; I wanted to run for something I felt deeply connected to.”
Less than a year ago, Anna says she couldn’t run a mile without stopping. Today, she’s training for a marathon while balancing work, teaching yoga, and everyday life – all while carrying a mission that’s deeply personal.
Every mile she runs is a reminder that survivors can create hope for the next generation of families.
Your support helps turn stories like Anna’s into hope for others.
Turning Gratitude Into Action
Ashley Peek | CBTF Endurance Team Member & Samuel’s Mom
When Ashley Peek’s son, Samuel, was diagnosed with a pediatric brain tumor, her family’s world changed forever.
As Samuel prepares to celebrate his 14th birthday and is now 10 months beyond his most recent surgery, Ashley is honoring his journey in a remarkable way: by running the 2026 TCS New York City Marathon as a member of Team CBTF’s Endurance Team.
Every training run and every dollar raised helps provide hope, connection, and support for families walking a similar path.
When asked what keeps her going, Ashley shared:
“Motivation will come in the form of running for people who do not have the option to physically run.”
She also hopes her family’s experience reminds others that they are never alone.
“Especially on hard days, when you are in the middle of that grief and chaos, knowing that others have been through similar days can be so helpful.”
Through her compassion and dedication, Ashley is helping ensure that other families have access to the support, resources, and community they need – and know they are never alone.
Your support makes that possible.
Every story you read today is possible because someone chose to give.
Your generosity ensures that children, survivors, siblings, and caregivers have a community to lean on during treatment, through survivorship, and beyond.
Whether your gift is $25, $50, $100, or any amount that’s meaningful to you, you’re helping ensure that no family walks this journey alone.
Help the Next Family Find Hope
Every story you read today is possible because someone chose to give.
Your generosity ensures that children, survivors, siblings, and caregivers have a community to lean on during treatment, through survivorship, and beyond.
Whether your gift is $25, $50, $100, or any amount that’s meaningful to you, you’re helping ensure that no family walks this journey alone.
The post Two Journeys. One Mission. appeared first on Children's Brain Tumor Foundation.
]]>When Naomi was born, her journey had already begun. Diagnosed with an immature teratoma—a rare congenital brain tumor—Naomi’s life would be shaped from the start by the effects of her condition. As her mother, Sandra, explains: “Naomi had a brain tumor before I even knew I was pregnant with her.”
At 16 years old, Naomi continues to live with the complex and lasting impact of her diagnosis. Partial paralysis, cortical visual impairment, and intellectual disabilities are just some of the challenges she faces each day. While many equate survivorship with recovery, Sandra emphasizes what many brain tumor families know all too well: surviving is only the beginning.
Every day life is layered with complexities: crawling remains her only means of independent movement. Hip surgeries and difficult recoveries have taken a toll, and developmental delays leave her functioning at the level of a preschooler. Still, Naomi whispers “walk” daily—and Sandra holds on to that word with hope.
“Naomi is perseverant and tenacious. She doesn’t smile or laugh often, so when it happens, it’s truly a beautiful thing. Hearing her laugh out loud with her sister—it’s one of the few things that keeps me going.”
Sandra points to systemic gaps in care—especially for those with more complex medical and developmental needs. “There’s a critical shortage of direct support professionals. These people are lifelines—for families like mine, and for the dignity and independence of people like Naomi.” While services like Medicaid and local developmental disability boards exist, navigating them requires relentless advocacy, and too often the support they provide falls short. “We need funding, training, and awareness—not just for treatment, but for lifelong care.”
A Mother’s Perspective on Hope, Independence, and What Comes Next
Independence looks different for Naomi than it might for most teenagers. Sandra dreams of being able to make a simple peanut butter and jelly sandwich on her own. At the same time, Sandra’s preparing for the long-term realities of caregiving and planning for the future—one that also considers Naomi’s sister, Nora, who will be starting college soon and is already deeply connected to Naomi’s journey. “I expect the remainder of my time on this planet will be filled with all it takes to care for Naomi for the rest of her life. Hopefully, we’ll have some adventures and fun along the way. I’ve even started a bucket list.”
Sandra wants other families in the brain tumor community to know they’re not alone. “It’s tough. It can be excruciating. It can wreck your marriage. It can destroy your finances. Ask for help. Remember the siblings. Give yourself grace.”
And to everyone else: “Survivorship does not mean cured. A childhood brain tumor is always there—even when it isn’t. The effects don’t end with treatment.”
Sandra’s call to action is simple: do something.
“Offer help. Don’t ask what someone needs—just do it. Advocate at the local, state, or federal level. Fund therapies, camps, or caregiver nights out. Be part of this.”
At CBTF, we are honored to share Naomi’s story—and deeply grateful to families like the Blacks, who help shed light on the complete picture of survivorship: the hardship, the hope, and the humanity. Their courage reminds us why our work matters and how vital it is to stand beside families through every stage of the journey.
We invite you to help CBTF continue empowering families with the resources, community, and hope they need—every step of the way.
Support Children Like Naomi
Your gift helps families like Naomi’s face each day with strength, hope, and support. Every donation makes a difference—thank you for standing with the brain tumor community.
The post Naomi’s Journey: A Rare Brain Tumor Before Birth, a Lifelong Fight for Independence appeared first on Children's Brain Tumor Foundation.
]]>The post Raising Awareness in the Fight for the Cure: CBTF Family Walk in Dayton, OH appeared first on Children's Brain Tumor Foundation.
]]>This annual walk brings the community together to support life-changing programs for children diagnosed with brain tumors, survivors, and bereaved families. Participants will have the chance to meet local survivors, engage in family-friendly activities, and help make a meaningful difference in the lives of those impacted by this devastating illness.
“CBTF invites everyone to join us for a fun and meaningful event, where we can show our support for the courageous children and families facing the challenges of pediatric brain tumors,” said Stacia Wagner, President of CBTF.
Event Details:
• What: Family Walk for the Cure
• When: October 26, 2024, at 9:00 AM
• Where: Day Air Ballpark, 220 N Patterson Blvd, Dayton, OH 45402
• Why: To raise awareness and funds for the Children’s Brain Tumor Foundation, supporting children and families affected by pediatric brain tumors.
To register for the walk or to donate, please visit cbtf.org/walk
About the Children’s Brain Tumor Foundation (CBTF):
The Children’s Brain Tumor Foundation is a non-profit organization dedicated to improving the treatment, quality of life, and long-term outlook for children and families affected by brain and spinal cord tumors. Through funding research, offering family support programs, and raising awareness, CBTF strives to create a community of hope.
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For media inquiries, please contact:
Steven Hazlett
Children’s Brain Tumor Foundation
Email: shazlett@cbtf.org
Phone: (212) 448-9494
Follow the Children’s Brain Tumor Foundation:
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Facebook: @cbtf.org
The post Raising Awareness in the Fight for the Cure: CBTF Family Walk in Dayton, OH appeared first on Children's Brain Tumor Foundation.
]]>The post Running for Hope: Sergio Gonzalez’s Journey to Raise Awareness for Childhood Brain Tumors appeared first on Children's Brain Tumor Foundation.
]]>Sergio Gonzalez is not just a devoted father; he is also a beacon of hope. As a member of Team CBTF, he is preparing to run the Chicago Marathon. His goal is to raise awareness and funds for childhood brain tumors. Sergio’s journey is marked by personal struggles and unwavering determination, showcasing the strength of family and community.
Inspiration Behind the Run
First and foremost, Sergio’s motivation stems from his son, Louis, who bravely battled a brain tumor at a young age. “Seeing him go through pain at such a young age motivated me,” Sergio shares. Moreover, he adds, “If he took all that pain, the pain of my body would be minimal.” This profound inspiration undeniably fuels Sergio’s desire to help not only his son but also all children facing health challenges.
Personal Health Battles
In early 2023, Sergio faced his own health battle. Unfortunately, he underwent significant recovery after struggling with head and neck cancer. Despite the ongoing pain, he remains committed to walking the marathon this year. “Children suffer so much more than I do. Therefore, I want to make a difference, even if it’s just a little bit,” he expresses passionately.
Louis’s Journey
Louis has faced numerous health challenges throughout his childhood. It all began with pneumonia, which led to a traumatic biopsy. After his brain tumor diagnosis, the family navigated a difficult road that included surgery and physical therapy. “The look in his eyes when he awoke from surgery in so much pain is something I will never forget,” Sergio recalls. Fortunately, thanks to the exceptional care at Stony Brook and the unwavering support of family and friends, Louis has made a full recovery.
Although the memory of those challenges lingers, the family remains grateful for the positive outcome. “We find strength by going through difficult times together,” says Sergio. He emphasizes the importance of support and community in their journey, illustrating how it has helped them overcome adversity.
The Meaning of the Marathon
For Sergio, participating in the Chicago Marathon is a deeply meaningful endeavor. “I feel grateful to have made it through the toughest three years of my life. Additionally, I feel grateful to be alive and healthy enough to walk,” he states. Despite the physical challenges ahead, he is determined to finish the marathon and raise funds for a cause that is close to his heart.
“Positivity and giving back are part of the recovery process,” Sergio emphasizes. His unwavering commitment to the Children’s Brain Tumor Foundation is evident, as he genuinely wants to raise awareness and support for families facing similar struggles. “If I can contribute something and help in any way, I will,” he adds resolutely.
A Message of Resilience and Hope
Ultimately, Sergio’s journey serves as a powerful reminder of resilience and hope. As he prepares to walk the Chicago Marathon, he embodies the spirit of Team CBTF, demonstrating that determination can shine even in the face of adversity. Through his efforts, he not only honors his son’s battle but also advocates for greater awareness and support for childhood brain tumors.
Your Support Matters: Help Fund Research and Resources for Childhood Brain Tumors
Sergio aims to inspire others by sharing his story, reminding them they are not alone in their struggles. You can support families like his by donating to the Children’s Brain Tumor Foundation. Your contributions will fund vital research and provide essential resources, helping to raise awareness for childhood brain tumors. Together, we can make a significant difference in the lives of these courageous children and their families. Join us in this vital cause!
The post Running for Hope: Sergio Gonzalez’s Journey to Raise Awareness for Childhood Brain Tumors appeared first on Children's Brain Tumor Foundation.
]]>The post Turning Hardship into Hope: Grace Banks’ Inspiring Journey appeared first on Children's Brain Tumor Foundation.
]]>Genevieve Banks, Grace’s mother, reflects on their journey: “The road to recovery has been long and winding. Grace continues to make progress each and every day and amazes us. Prior to Grace’s battle with brain cancer, I did not understand the long range of lasting effects tumors have. We need to raise awareness and help families get the best possible outcomes. CBTF makes that possible.”
For the Banks family, last year’s CBTF walk was a beacon of hope amid their struggles. Genevieve explains, “It brought our family and friends together and helped us to turn our negative experiences into positive ones. We so appreciate everyone’s generosity and contribution to this incredible cause.” The event highlighted the strength of community and the importance of coming together during difficult times.
As they prepare for this year’s walk, Genevieve shares a message of encouragement: “Coming together to walk is a healing process and gives us so much hope. Please join Team Amazing Grace!”
To support Team Amazing Grace and their fundraising efforts, visit their page at tinyurl.com/amazinggrace24. Your contribution will support their ongoing battle and help advance the fight against brain tumors.
We invite you to join us this September in Long Island, NY, New Jersey, and Dayton, OH. Every step we take together brings us closer to a future where no family has to face this journey alone. Learn more and register at cbtf.org/walk.
Thank you for your continued support and for helping us make a difference.
Support Team Amazing Grace's Fundraiser
Support Grace Banks and her family as they walk in the CBTF Family Walk for the Cure this September in Long Island, NY. Their fundraiser is dedicated to raising awareness and funds for brain tumor research. Your support can make a real difference. Click the link below to contribute and help them reach their goal.
The post Turning Hardship into Hope: Grace Banks’ Inspiring Journey appeared first on Children's Brain Tumor Foundation.
]]>The post Spotlight on Jessica Elder: A Beacon of Support for Bereaved Families appeared first on Children's Brain Tumor Foundation.
]]>Meet Jessica Elder
Jessica Elder, a dedicated member of the Children’s Brain Tumor Foundation (CBTF) team, has served as the Bereavement Program Manager since 2009. With a remarkable 20-year career as a clinical social worker, Jessica has been instrumental in shaping the support offered to bereaved families. Her extensive background includes roles as a therapist, program developer, manager, and oncology social worker. Initially, Jessica began her career in pediatric oncology at a prominent NYC hospital. During this time, she gained a deep understanding of the critical need for sustained support for families facing the loss of a child. This realization inspired her to join CBTF and expand the bereavement support program to address the ongoing needs of grieving families more comprehensively.
Jessica shares, “After graduate school, I began my career working in the pediatric oncology division of an NYC hospital. When I started working at CBTF in 2009, I had an understanding of how much ongoing support and community is needed for bereaved parents and decided to expand CBTF’s bereavement support program.”
A Journey of Commitment
Jessica’s career took off in pediatric oncology at an NYC hospital, where she quickly recognized the pressing need for ongoing support for families grieving the loss of a child. She states, “Some of the most significant challenges faced by bereaved families include the intense pain and longing, isolation, and the experience of managing all of the challenges and secondary losses that result from grief.” Consequently, she felt compelled to expand CBTF’s bereavement program to offer comprehensive support during families’ most challenging times, thus making a significant impact.
Understanding Bereavement Challenges
Families coping with grief often encounter intense pain and feelings of isolation. To address these issues effectively, Jessica and her team have developed a virtual support community. This platform allows parents to connect, share their experiences, and find understanding. Jessica explains, “Our program tries to support families with these challenges through a virtual support community that can be accessed by families in all areas. Our community aims to help parents feel less isolated, while offering validation and understanding. While our programs and groups can’t take away pain and longing, they can provide an outlet for parents to express and process their grief with the support of other parents.”
Comprehensive Support Services
CBTF’s Bereavement Program offers a variety of valuable resources. These include:
- Private Facebook Community: This space provides connection and support for families.
- Support Groups: These groups create opportunities for parents to discuss their experiences and find solace.
- Educational Groups: Informational sessions offer valuable insights into navigating grief.
- Specialized Groups: Such as the grief book club and writing group, which cater to specific needs.
- Monthly Support Groups: Conducted in collaboration with the Marc Jr Foundation, these groups offer additional support.
- Mentor Program: Designed to connect bereaved parents for personalized guidance and support.
- Individual Assistance: Tailored help is available based on families’ specific needs.
Jessica highlights the importance of these services, noting, “Our main services include a private Facebook community, general support groups where parents can share their stories and challenges, informational and educational groups, and groups that help families to understand and process their grief experiences (including our grief book club and grief writing group).”
The Importance of Community
Community and peer support play crucial roles in the healing process. Jessica observes, “Community and peer support are some of the most important components of a support program. Because of the unique, intense, and isolating experiences bereaved parents face, there is a strong need to feel heard, understood, validated, and supported.” For instance, our monthly online support group brings together parents at various stages of their bereavement journey. This mutual support helps them navigate grief and provides hope through shared experiences. Moreover, the connections made in these groups offer unique comfort and understanding.
Looking Ahead
Looking to the future, Jessica plans to further expand the program’s reach and resources. She aims to introduce additional support tools and groups, including those for bereaved siblings. Jessica notes, “In the future, one of our goals is to expand our reach so that more bereaved parents find our community. We would like to continue adding groups and programs that offer parents tools to manage the difficult challenges and experiences of grief.” Over the past 12 years, the program has experienced significant growth, evolving from assisting 30 families to nearly 600. This expansion highlights the ongoing need for compassionate support and emphasizes the program’s impact.
Get In Touch
For further information or to connect with our community, please contact Jessica at jessica@cbtf.org. Together, we can build a supportive network for families across the country, regardless of where they are in their grief journey. To learn more about our bereavement program and how you can get involved, visit cbtf.org.
The post Spotlight on Jessica Elder: A Beacon of Support for Bereaved Families appeared first on Children's Brain Tumor Foundation.
]]>Follow Samantha Mauser from college runner to dedicated medical student and marathoner in this compelling story of resilience, purpose, and community. Learn how she balances the demands of marathon training with her studies, her motivation for running, and her commitment to raising funds for the Children's Brain Tumor Foundation.
The post Samantha Mauser: From College Runner to Marathoner & Medical Student appeared first on Children's Brain Tumor Foundation.
]]>Samantha Mauser’s journey from college runner to dedicated medical student and marathoner exemplifies resilience, purpose, and the transformative power of community.
After graduating from college, Samantha found herself asking the daunting question, “…okay…now what?” Inspired by her college teammates who undertook impressive physical challenges, such as running from their hometowns to the university track, Samantha decided to tackle her first marathon during her first semester of medical school. Reflecting on her debut at the 2021 Philadelphia Marathon, she humorously recalls telling her mom at the finish line, “I think I broke my foot and I think I qualified for the Boston Marathon.” Both statements turned out to be true, marking the beginning of her remarkable journey in marathoning.
Initially driven by performance, Samantha’s perspective on running has evolved significantly over the years. “When I first started, it was all about how fast I could go,” she admits. “But now, it’s about staying healthy and finding a deeper purpose. If I can bring joy to a friend or ease stress during a run, that’s success to me.”
Samantha’s commitment to making a difference extends beyond personal achievements. During her pediatrics rotation in medical school, she witnessed firsthand the challenges faced by children with serious health conditions and their families. “One particular case involving a young patient with early puberty and potential brain tumor concerns highlighted the disparities in healthcare access. It deeply affected me and fueled my determination to help.”
Balancing the demands of medical school with rigorous marathon training has been no small feat for Samantha. “Running became non-negotiable,” she explains. “Even during intense study periods like preparing for Step 1 and training for the Boston Marathon simultaneously, I knew the mental clarity it provided was essential.”
This year, Samantha is taking on the NYC Marathon with a renewed focus: raising funds for the Children’s Brain Tumor Foundation (CBTF). “I’ve chosen not to set a personal record this year,” she reveals. “Instead, I’m prioritizing fundraising for CBTF. I hope my journey inspires others to contribute and make a meaningful impact.”
Samantha’s advice for aspiring endurance athletes looking to support causes close to their hearts is practical yet heartfelt. “Sharing your journey on social media can make a significant difference,” she advises. “I’ve found that documenting my training on Instagram (@smauser) has helped raise awareness and funds—sometimes $100-$300 per post. While fundraising can be challenging, knowing it supports a cause you believe in makes every step worth it.”
In Samantha Mauser, we find a testament to perseverance, compassion, and the profound impact one individual can make through determination and community support. As she continues her journey, Samantha exemplifies how each stride can bring us closer to both personal achievement and collective change.
Support Samantha's Marathon Journey
Support Samantha’s Marathon Journey and help make a difference! Click the link to donate to her fundraiser, supporting the Children’s Brain Tumor Foundation and their vital programs for families nationwide. Every contribution counts towards providing crucial support and resources. Thank you for your generosity!
The post Samantha Mauser: From College Runner to Marathoner & Medical Student appeared first on Children's Brain Tumor Foundation.
]]>The post The Lifelong Impact of Childhood Brain Tumors: Navigating New Challenges & New Chapters appeared first on Children's Brain Tumor Foundation.
]]>While the disease and its treatments may cast lingering shadows, they do not define the trajectory of a survivor’s life. Baseline neurocognitive assessments serve as beacons of guidance, providing invaluable insights into the individualized needs of each child. Armed with this knowledge, healthcare providers can offer tailored support, nurturing the potential for growth and recovery.
Although late effects may emerge unexpectedly, they are not insurmountable obstacles. Through early detection and proactive intervention, we can mitigate their impact, allowing survivors to flourish in their educational and personal pursuits. Yes, there are challenges ahead—research endeavors face complexities inherent in studying diverse populations and evolving treatment modalities. Yet, these challenges serve as catalysts for innovation and collaboration, propelling us closer to a deeper understanding of the lifelong implications of childhood brain tumors.
At the Children’s Brain Tumor Foundation, we stand alongside childhood brain tumor survivors and their families, recognizing the lifelong journey they face. Our commitment is unwavering—to provide support, resources, and advocacy that empower survivors to navigate the neurocognitive challenges they encounter. Together, let us foster a community of resilience and hope, ensuring that no child or family faces this journey alone.
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Written and presented by the Children’s Brain Tumor Foundation through studies and findings published by the National Library of Medicine.
Source: “Neuropsychological Outcomes of Children Treated for Brain Tumors.” Published in 2023
The post The Lifelong Impact of Childhood Brain Tumors: Navigating New Challenges & New Chapters appeared first on Children's Brain Tumor Foundation.
]]>The post From Diagnosis to Recovery: Gavin’s Inspiring Journey Through Childhood Cancer appeared first on Children's Brain Tumor Foundation.
]]>In the whirlwind of doctors’ visits, treatments, and hospital stays, Gavin’s family found themselves navigating a tumultuous journey they never expected. From the initial shock of a brain tumor diagnosis to the relentless battle through surgeries and treatments, their resilience was tested in ways they couldn’t have imagined. Yet, amid the chaos, they found moments of strength, unity, and a newfound appreciation for life’s simplest joys. As they embraced their new reality, they learned to treasure each moment with their son, understanding that life’s fragility demands a shift in priorities and a deepened sense of gratitude.
Written by Gavin’s mother, Stephanie Prince
Gavin had barely turned 7 years old when he started having vomiting episodes. The first incident happened at a friend’s house in February 2016. Mom and Dad just thought he ate too much junk food. A week later, it happened again at school. This time, his parents thought he had just run around too much in PE. The episodes were happening uncontrollably at least once a week. The first pediatrician Gavin saw said that he had severe allergies to the change in weather. The second one he was taken to (his actual pediatrician) had Gavin do some reflex testing and ordered an MRI of his head, but he said we would have to wait for insurance approval, which could take up to 2 weeks. At this point, the vomiting was happening every 3-4 days. The following day, Gavin had another episode at school. While Gavin’s dad took him to a third pediatrician, his mom was on the phone trying to get an MRI ordered sooner and thinking of other places to take him. Stephanie, Jeff, and Brendan took Gavin that night to an urgent care facility where the nurse on staff could do a CT scan. An hour later, results came back that Gavin had a 4cmx4cmx4cm mass at the base of his brain and that he would need to be admitted to a hospital immediately. Unexpected news like this does not process fast enough and Stephanie knew something was truly wrong when she saw Jeff break down in tears.
He was admitted to UMC Medical Center PICU Wednesday night, April 13th. Thursday morning, the family was met by a neurosurgeon who said that the brain tumor removal surgery was scheduled for Friday the 15th. In the weeks to follow, doctors were preparing Gavin and his family for future radiation and chemotherapy treatments. He had a total of 3 surgeries in the four weeks he stayed at UMC and lost 12 pounds due to vomiting, recovery, and loss of appetite. Stephanie and Jeff took turns staying around the clock with Gavin, along with some much-needed help from both grandmothers. While Jeff spent the majority of the time with Gavin in the hospital, not able to use the room’s shower or toilet facilities, Stephanie would wake up early mornings, drop Brendan off at school, spend 45min-1hr with Gavin at the hospital, go to work, revisit on the way to pick up Brendan from after school care, go home to tend to little brother, and repeat the cycle the next day. Because of the severity of his condition, the brothers were not allowed to see each other for the first two weeks. Both became very somber and lonely. At one point, Brendan asked Stephanie, “Mommy, is it going to hurt when I get sick?”
When Gavin was released a month later, he was very frail and lost most strength in his left arm and leg. He needed assistance getting up, sitting down, and walking. He was put into physical and occupational therapy, which he did twice a week. He missed over a year of school, including all of 2nd grade. Though Stephanie and Jeff did the best they could between appointments to home-school Gavin, there is a reason that they are not teachers.
Gavin has been through a total of 30 radiation treatments, nine in-hospital chemotherapy treatments, and weekly in-clinic IV chemotherapy doses from May 2016 to June 2017. He’s also been hospitalized for fever, severe dehydration, and two blood transfusions during that time. He’s had at least 6 MRIs, a handful of CT Scans, and even an X-ray to continually make sure there is no residual tumor remaining or spreading that first year after diagnosis. There were countless sleepless nights of vomiting from the chemotherapy medication and radiation. Stephanie remembers one night just holding him and crying on the bathroom floor after he was sick. Other side effects included insomnia and severe tiredness. Gavin had his final in-hospital chemotherapy treatment on June 14, 2017. The entire nursing staff made signs for him and cheered him on as he left.
Gavin was cleared to return to school and advance to 3rd Grade in August 2017. He had his port central line removed on November 22nd, 2017. Two years after his tumor removal surgery, a Q-tip-sized hole appeared at the top of his scar. It would close and scab over, then reopen. His neurosurgeon at the time performed another surgery to “clean up the area.” Unfortunately, this did not work, and Gavin had another surgery a couple of months later with his neurosurgeon and a plastic surgeon. They discovered two types of bacterium, and Gavin was put on antibiotics. He continues to have issues with his scar completely healing, and the family is currently talking with doctors about other solutions. He has annual follow-up MRIs to make sure the tumor has not returned. As side effects from the chemotherapy and radiation, Gavin also meets with an audiologist every year for slight hearing loss. He sees an endocrinologist every four months to monitor and adjust his at-home daily injection of growth hormone therapy because he does not meet the average growth of other kids his age.
For those families whose child has been recently diagnosed and asking what kept us going, you just do. When it comes to your child’s health, safety, and life, that’s all you can do. You’ll feel helpless while being pulled in so many different directions, but you have to keep going for them. Pay very close attention to what the medical staff and facilities are doing. And never be afraid to ask questions, no matter how silly they seem. We had a couple of instances where doctors and nurses would have messed up Gavin’s treatment if we had not spoken up. One time, they would have given him the wrong IV chemotherapy dosage if we had not said something. Another time, they had the wrong number of treatments completed. If you have to, keep a journal of procedures, appointments, the ups and downs, and any milestones.
We can honestly say we have a new perspective on life. We used to be the work, work, work family. Family vacations and outings with the kids rarely happened because we had big plans and goals. We have learned to slow down. That work is work, but time with your children is priceless because you are not guaranteed tomorrow. We take more trips (even if it’s just a day outing) and try to experience more things than we used to. In all honesty, this journey will never end, and you’ll have to accept the new “normal” because you will never be able to go back to the way things were. But hopefully, it will calm down and smooth out enough that you’ll finally feel like you can breathe.
With Sincerest Regards,
The Prince Family
Children are diagnosed with a brain tumor each year in the U.S.
The post From Diagnosis to Recovery: Gavin’s Inspiring Journey Through Childhood Cancer appeared first on Children's Brain Tumor Foundation.
]]>What a wonderful way to kick off 2024! We are filled with gratitude as we reflect on the success of our AYA Dave & Buster’s Party this past weekend, celebrating and honoring our community of adolescent and young adult brain tumor survivors and their families with a day of fun and friendship.
This is the first AYA Dave & Buster’s Party since the start of the pandemic, and we couldn’t be happier to bring it back to our community. The fact is, adolescent and young adult brain tumor survivors often face challenges in social and educational settings, where the unique cognitive and emotional impact of their experiences can lead to feelings of isolation. We’re proud to say our AYA Holiday Party is back, thanks to the financial contributions of donors like you.
A heartfelt thank you to The Hubbard Family Trust for their generous sponsorship, making this event possible. Their commitment to our cause has created lasting connections and moments of joy for our community. We strive to make each and every event feel like a family reunion, bringing together a community bound by shared experiences and unwavering support.
To everyone who contributed, attended, and shared in the celebration, your support propels our mission forward. Together, we continue to uplift, support, and empower our community until we find a cure.
Gratefully,
The Children’s Brain Tumor Foundation
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