The Childhood Cancer Perspective

In this episode of *The Childhood Cancer Perspective*, host Curtis Vallier sits down with **Patty and Jason Rodriguez** to share the story of their son, **Aiden**, who was diagnosed with **Grade 3 Choroid Plexus Carcinoma (CPC)**, an extremely rare and aggressive form of pediatric brain cancer.

Facing a diagnosis with limited treatment options and significant uncertainty, Patty and Jason found themselves navigating a complicated medical system while searching for the best possible care for their son. They discuss the challenges of understanding rare childhood cancers, advocating for treatment options, and finding medical professionals willing to explore innovative approaches.

A major focus of their conversation is **intra-arterial chemotherapy**, a specialized treatment approach that delivers chemotherapy directly into arteries supplying the affected area. Patty and Jason share their experience pursuing this treatment, the role of clinical trials and medical innovation, and the importance of continuing to develop new options for children facing rare and difficult-to-treat cancers.

Their discussion also explores the challenges families face when navigating pediatric oncology, including communication with medical teams, finding reliable information, seeking additional opinions, and making difficult decisions under extraordinary circumstances.

Throughout Aiden's journey, family, friends, and community support played an important role. Patty and Jason reflect on the people who stood beside them, the emotional realities of childhood cancer, and why no family should have to navigate such a diagnosis alone.

**Today, Aiden has been in remission since September 2023.** His story offers a perspective on the importance of pediatric cancer research, innovative treatments, and the determination of parents advocating for their children's futures.

Curtis, Patty, and Jason also discuss the lasting effects of treatment, the need for greater awareness and understanding within the medical community, and what they wish other parents knew when facing a childhood cancer diagnosis.

This episode is more than a conversation about a rare brain tumor. It is about a family's determination to find answers, the possibilities created through medical innovation, and the hope that continued research can bring to children diagnosed with devastating cancers.

### Topics Discussed

- Aiden's diagnosis with Grade 3 Choroid Plexus Carcinoma

- Navigating rare pediatric brain cancer treatment options

- Intra-arterial chemotherapy and innovative approaches

- Clinical trials and the importance of pediatric cancer research

- Parental advocacy and communication with medical professionals

- Family and community support during treatment

- Aiden's remission and long-term treatment effects

- Advice for families facing a childhood cancer diagnosis

**Medical Disclaimer:** This episode shares one family's personal experiences with pediatric cancer and specialized treatments. Treatment decisions should always be made in consultation with qualified medical professionals. Individual outcomes may vary.

Q&A: Dr. Mark Souweidane on Innovating Treatments for Devastating Pediatric Brain Tumors | Commentary | Advances in Pediatric Oncology & Neurology | NewYork-Presbyterian

In this episode of The Childhood Cancer Perspective, Curtis Vallier sits down with Lilian McGrath to share the story of her son, Bryson “Goosey” McGrath, who was diagnosed with Stage 4 high-risk neuroblastoma at just 2 years old.

For 1,027 days, Bryson and his family lived through the realities of childhood cancer—intensive treatment, hospital stays, difficult decisions, complications, uncertainty, and ultimately the unimaginable transition to hospice and bereavement.

Lilian speaks openly about the medical system failures she believes affected Bryson’s care and the difficult reality that parents can quickly find themselves becoming researchers, interpreters, record keepers, and advocates while simply trying to be Mom or Dad. She and Curtis discuss the importance of asking questions, seeking answers, trusting parental instincts, and making sure a parent’s voice is heard when decisions about their child are being made.

The conversation also goes beyond treatment.

Lilian shares what it was like navigating hospice care for her child, the realities of grief after losing Bryson, and the gaps in support families can experience both during treatment and after their child dies. They discuss what families actually need during these moments—not assumptions about what might help, but meaningful support built around the lived experiences of childhood cancer families.

That experience led Lilian to create Derail Childhood Cancer, a new foundation dedicated to supporting families throughout the childhood cancer journey. Its mission includes helping families at diagnosis, making birthdays spent in the hospital feel special, and providing compassionate bereavement support when a family faces the loss of their child.

Bryson’s story is at the heart of that mission.

This episode is raw, practical, and deeply personal. It is a conversation about Stage 4 neuroblastoma, medical advocacy, hospice, grief, and turning devastating experience into meaningful support for the families who come next.

Most importantly, it is the story of Bryson “Goosey” McGrath—a little boy whose 1,027-day fight continues to inspire his family to advocate, speak up, and make sure other childhood cancer families know they do not have to navigate this road alone.

Links: https://www.derailcc.org/

Instagram: _livin_like_lily

Instagram: derailchildhoodcancer

In this episode of *The Childhood Cancer Perspective*, host Curtis Vallier sits down with Amelia Fish to share the story of her daughter, Abby, and their family’s experience with **Choroid Plexus Carcinoma (CPC)**—an exceptionally rare and aggressive pediatric brain cancer.

Amelia takes us back to the beginning of Abby’s journey, from the first signs that something wasn’t right to the discovery of a brain tumor and the surgery that followed. She discusses what doctors learned about Abby’s tumor, the role genetic findings played in understanding her disease, and the difficult conversations surrounding prognosis and treatment options.

The conversation explores the realities families face when treating an extremely rare childhood cancer. Amelia shares the complications Abby experienced during treatment and hospitalization, the side effects and limitations of conventional therapies, and the decisions that led their family to investigate additional holistic and alternative approaches while continuing to search for hope.

Curtis and Amelia also discuss the importance of parental advocacy. When treatment options are limited, parents can quickly find themselves researching their child’s disease, seeking additional medical opinions, asking difficult questions, and trying to understand complicated medical and genetic information while simultaneously caring for a seriously ill child.

Amelia speaks candidly about the emotional and financial toll pediatric cancer places on an entire family. Their conversation touches on faith, uncertainty, caregiver exhaustion, medical expenses, and the challenge of making decisions when there may be no clear or proven path forward.

At the center of the episode is **Abby**—not simply a diagnosis or a rare cancer case, but a daughter whose life profoundly shaped the people around her.

Amelia reflects on what Abby taught their family about love, faith, hope, and being present. Her message to other parents is simple but powerful: **cherish every day with your children.**

### Key Takeaways

Rare childhood cancers like Choroid Plexus Carcinoma can leave families navigating limited research, difficult treatment decisions, and tremendous uncertainty. Abby’s story demonstrates why continued pediatric cancer research matters—and why families need physicians, researchers, advocates, and communities willing to listen.

Parents and caregivers can also become critical members of their child’s medical team. Asking questions, understanding the diagnosis, requesting additional opinions, and learning about available research can help families participate more fully in decisions about their child’s care.

Most importantly, behind every diagnosis is a child and a family. Abby’s story is a reminder that childhood cancer is about far more than survival statistics. It is about childhood, family, time, and the people whose lives are forever changed by the experience.

### Topics & Keywords

Choroid Plexus Carcinoma (CPC) • pediatric brain cancer • childhood brain tumors • rare childhood cancer • pediatric cancer treatment • genetic mutations • holistic cancer approaches • second opinions • parent advocacy • caregiver experience • childhood cancer research • financial toxicity • faith and cancer • childhood cancer awareness

**Medical Disclaimer:** This episode shares one family’s personal experience with pediatric cancer, including discussion of holistic and alternative approaches. Nothing discussed in this episode should be considered medical advice or a substitute for guidance from a qualified medical professional.

Curtis Vallier shares his journey through childhood cancer advocacy, updates on new programs, and insights from CureFest DC, emphasizing community support and innovative treatments.

keywords

childhood cancer, advocacy, CureFest, youth survivorship, CAR T therapy, community support, care packages, fundraising, medical innovation

key topics

Childhood cancer advocacy and community support

Development of youth survivorship programs with YMCA

Innovations in cancer treatment including CAR T therapy

The impact of personal stories and community recognition

Fundraising and resource sharing for childhood cancer

takeaways

Community support is vital for families affected by childhood cancer.

Creating structured programs like Youth Strong can help normalize life after treatment.

Innovations like CAR T therapy are promising but require faster access.

Personal stories from children and families inspire advocacy and policy change.

Every act of kindness, like care packages, has a profound impact.

sound bites

"People recognize us, people recognize Battlecorn."

"Children turn their pain into inspiration."

"Her personality didn't change until her last days."

Tony Garcia

[email protected]

Book Signing: Sunday October 11th 1-3pm

Half Price Books

5803 E. NW Hwy

Dallas, TX 75231

Book Purchase Link:

https://www.amazon.com/dp/1957604840

Tony Garcia shares his journey from childhood leukemia diagnosis to survivorship and adulthood, highlighting the emotional, medical, and community aspects of pediatric cancer. This episode emphasizes the importance of understanding survivorship beyond treatment and the power of sharing personal stories to inspire and support others.

keywords

pediatric cancer, survivorship, childhood leukemia, cancer treatment, medical advances, emotional impact, community support, book writing, hope, advocacy

key topics

Tony Garcia's experience with childhood leukemia diagnosed in 1973

The emotional and physical toll of cancer treatments in the 70s

Advancements in pediatric cancer treatment over the decades

The importance of survivorship care and regular checkups

The role of community and advocacy in cancer recovery

Writing a book to share personal cancer journey

The impact of cancer on family and siblings

Faith, hope, and the purpose found through adversity

In this episode, Curtis Vallier interviews Lily Moss, a country singer and childhood cancer survivor, about her journey, music, and advocacy. They discuss the impact of childhood cancer, the importance of support systems, and how Lily uses her platform to give back and raise awareness.

childhood cancer, survivor, music, advocacy, philanthropy, country music, survivorship, awareness, family support, research

*key topics

Lily Moss's childhood cancer experience and survivorship

Her music career and songwriting process

The importance of family and support systems during illness

Her advocacy and philanthropy for pediatric cancer

The impact of survivorship on life perspective and giving back

*sound bites

"We are the same fighter, we're the same warrior"

"We don't take a single moment for granted"

"It doesn't define me, it defines what we do"

*Useful Links (Click and Save All of Them)

https://linktr.ee/lillymoss.music

https://www.facebook.com/LillyMoss.Music/

https://www.lillymoss.com/

https://www.instagram.com/lillymoss.music/

https://www.youtube.com/@lillymoss

https://open.spotify.com/artist/5FOKKpkO9t13FKwScZGC18

https://music.apple.com/us/artist/lilly-moss/1629248040

https://music.amazon.com/artists/B0C5VYHFR3/lilly-moss

*NEW MUSIC PRE-SAVE

https://ffm.to/diggin

In this episode, Curtis Vallier hosts Chris Mallinos to share the emotional journey of Theo's battle with leukemia, highlighting the importance of mental health, family resilience, and community support in pediatric cancer. They discuss the power of hope, the significance of mental health awareness, the importance of Dad's being vulnerable and able to share their stories without the fear of judgement. and the inspiring stories of children facing unimaginable challenges.

key topics

Theo's leukemia diagnosis and treatment journey

The emotional and mental health challenges faced by families

The importance of community and support networks

Stories of hope, resilience, and inspiration from children with cancer

The role of mental health awareness in pediatric cancer care

keywords

pediatric cancer, mental health, family resilience, childhood leukemia, community support, hope, coping strategies, cancer awareness, family stories, mental health in children

Links:

“My son was diagnosed with cancer. Metallica’s Toronto concert gave him something to fight for” - Toronto LifeMy 11-year-old son has leukemia. How and when should I talk about it? | CBC News

# The Evolution of Battlecorn: Beyond Care Packages

> Discover how a personal journey transformed into a global mission.

Welcome back to the Childhood Cancer Perspective. Today, I want to share a deeply personal journey that led to the creation of Battlecorn Global, an organization that started from a place of love and necessity during our daughter Jaycee's battle with cancer.

## The Spark of Inspiration

When Jaycee was undergoing her treatments, we experienced firsthand the impact of receiving care packages. It wasn't just the contents that mattered; it was the joy and distraction they brought into her life during such a challenging time. As adults, we often dread receiving mail, but for a child in the hospital, a package can light up their day. It became clear to us that these packages evolved into something much bigger than we anticipated.

## Acknowledging the Broader Impact of Childhood Cancer

Childhood cancer doesn't just assault a child's body; it disrupts their entire world. Families face unimaginable stress, and the normalcy of childhood is stripped away. Children find themselves surrounded by medical jargon and procedures instead of birthday parties and soccer games. In this chaos, moments of distraction become precious.

> "For five, ten minutes, maybe an hour, cancer isn't the most interesting thing happening in the room." — Curtis Vallier

These moments of distraction are crucial. They remind children of their childhood, allowing them to laugh, play, and simply be kids, even if just for a little while. This emotional well-being is vital during treatment — it fosters hope, something we talk about often in the childhood cancer community.

## More Than Just Packages

Initially, Battlecorn Care Packages aimed to bring smiles and distractions. It was about sending love and reminding families they are not forgotten. However, as we engaged with other families, we uncovered deeper issues within the childhood cancer landscape — financial struggles, lack of resources, and the need for advocacy.

> "Care packages could help families survive moments. But there were bigger problems that required bigger solutions." — Curtis Vallier

These insights catalyzed our evolution into Battlecorn Global. We realized that advocacy is not separate from our mission; it's an extension of it. While we strive to make today better with care packages, we also advocate for changes that will improve the future experiences of families facing childhood cancer.

## The Power of Stories

Our journey is not just about care packages; it's about sharing real stories — the victories, the failures, the moments of joy, and the heartbreaking ones. These stories matter. They are often overlooked in media portrayals of childhood cancer, which tend to sanitize the experience.

> "Stories matter. Real stories, not sanitized by TV and media." — Curtis Vallier

Through the Childhood Cancer Perspective, we aim to amplify these voices, ensuring that families, survivors, and caregivers are heard. They are the real experts in this journey and deserve to be part of the conversation.

As we move forward, we remain committed to our ever-evolving mission, striving to create a better tomorrow for families affected by childhood cancer. Together, we can make a difference, one package at a time.

Curtis Vallier shares profound insights on grief, the importance of community, and how to navigate the emotional journey after losing a loved one, especially a child. This episode emphasizes that grief is a personal process and highlights the power of support, vulnerability, and authentic connection.

keywords

grief, support, community, loss, emotional health, healing, mental health, coping, family, friendship

key topics

The different types of grief including anticipatory grief

The importance of surrounding yourself with supportive people

How walls and barriers develop during grief and how to break them down

The misconception that time heals all wounds

The significance of authentic connections and vulnerability

The role of outlets like music, writing, and community in healing

The impact of loss on relationships and how to manage them

The importance of asking for help and letting others support you

The unique challenges faced by grieving fathers and men

The ongoing process of grief and finding a new normal

takeaways

Grief is not just about losing someone; it includes lost time and opportunities.

You do not have to carry grief alone; support is essential.

Walls built during grief can prevent healing; vulnerability is key.

There is no timeline for grief; it is a personal journey.

Supportive people accept you as you are, without judgment.

sound bites

"You do not have to do this alone"

"Time does not heal all wounds"

"Strength isn't carrying everything yourself"

Discussion

Curtis Vallier shares insights on the challenges faced by the childhood cancer community, including misinformation, infighting, and political issues, and discusses ways to unite and advocate more effectively.

keywords

childhood cancer, advocacy, misinformation, infighting, funding, politics, community, awareness, research, healthcare

key topics

Misinformation as a barrier to awareness

Impact of infighting within the community

Political influence on funding for pediatric cancer

The real day-to-day struggles of families

The importance of unity in advocacy efforts

Misconceptions portrayed through media

The role of government and funding levels

Community stories and personal experiences

Critical thinking and questioning in research

Strategies for effective advocacy and change

takeaways

Misinformation often comes from those aware of the problem but downplay its severity.

Infighting and political disagreements weaken advocacy efforts.

Funding for pediatric cancer is often misunderstood and misrepresented.

Community unity is essential for effective advocacy and change.

Personal stories highlight the real struggles families face.

sound bites

"Misinformation is the biggest hinder in our fight."

"We need to work together despite our differences."

"Funding for pediatric cancer is always on the chopping block."