Stories of Inspiration

There is no way to fully understand the anguish a pediatric low-grade Astrocytoma, Juvenile Pilocytic Astrocytoma, Fibrillary Astrocytoma, or other kind of brain tumor has on the thousands of patients and families affected by them.

Families report feelings of isolation, loneliness and desperation when navigating the choppy waters associated with the diagnoses, treatments and complications.

We welcome YOUR personal stories and experiences. Through our collective sharing we will find strength and comfort. Submit your story.

Title Description
A Patient's Perspective

Emily, age 16, is a PLGA survivor and she shares her insight into her experience after being diagnosed with a JPA. (Video)

Hailey’s Chemotherapy Visit Hailey’s parents share their experience taking their 2 year old daughter, Hailey, for her weekly chemotherapy treatment.
Wild Goose Chase and Misdiagnosis  Written by Eden Bell, mother of Samantha, two weeks after Samantha was diagnosed with JPA. Eden describes almost a year of misdiagnosis until her pediatrician at Rady's Children's Hospital correctly diagnosed Samantha's tumor.
The Day Our World Changed Witten by Zackary's mother, Traci P, this story describes the journey from diagnosis to rehabilitation. "Zachary is an inspiration to everyone who knows him. He never gives up and is a true miracle to us all. He takes karate and has done so well with it that his rehab doctor has discharged him from physical therapy. He is doing very well in school and will be starting the 3rd grade in the fall of 2008. He continues to have visits with his neurosurgeon, neurologist, opthalmologist, and rehab doctor. We continue to pray daily the rest of the tumor will shrink on its own."
We Are Survivors Written by Kristin, mother of Genna, (9 years old, DX Diffuse Brain Tumors, NF1) about the meaning of "survivor". An excerpt:

"I sometimes feel guilty saying 'we'; after all, it’s Genna who does the hard work of survivorship. But since her battle began so young, she doesn’t fully understand the stakes. That battle we fight for her, the battle of knowing, of knowing too little and too much in the same gasping breath, of searching for answers and begging for ignorance.

We are survivors."

Helping Hailey Through Regular Chemotherapy Visits

Hailey Meltz's parents offer a candid videotape of the challenges of bringing their 2 year old daughter in for her regular chemotherapy visits.

A Child's View of Philanthropy

This remarkable story of how a ten year old girl, whose cousin has Juvenile Pilocytic Astrocytoma (JPA), raised funds for pediatric brain tumor research. It is an inspiring story from someone so young.

A Grandmother's Nightmare

 

This candid and heart-wrenching story shared by a grandmother whose grandchild has JPA, reminds us all that JPA, can show up in any child, at any age. Not enough research is in progress, diminishing our hopes for kinder, gentler treatments, not to speak of a cure.

A Mother's Story

I looked at your website today and felt compelled to share my son Jack's story of JPA. We have several reasons for sharing this story: one, we believe that every family should have a medical advocate, especially if they have no medical knowledge, to help get second opinions. We found the center where our first surgery was performed to be completely lacking on giving us any advice on where to turn after they had exhausted their resource base of knowledge. They just shrugged and wrote us off.

Clergy Rides for Brain Tumor Research

A moving story of the anguish of one grandparent and how one clergy leader stepped forward to help, even knowing that all of his congregants have special causes. Once you read this, only you can decide whether to ask your religious leader for help by sharing this article with the head of your congregation.

From an Author's Perspective I have three children and one of my dearest friends has three children. When my friend's son was diagnosed with JPA two years ago, I was in the midst of writing The Spriitelees, a children's holiday book. It occurred to me that I couldn't bring a book about kindheartedness that requests children to be kind without demonstrating my own commitment to this way of being.
A Message of Hope - From a Patient's Perspective This is a story written by a 25 year old student at Columbia University who recently was diagnosed with a brainstem JPA. Told by many doctors that he was inoperable, he found one doctor that disagreed. This is his story - a story of trust, faith and determination.
The Impatient Parent

Thanks so much for your kind words and encouragement. I have found this journey so frustrating. People that know me and care about do sometimes wonder why I am still so worried about Abbie because her tumor was "benign". I have read everything I can about JPA's since Abbie's diagnosis so I know that it would be crazy for me not to be worried.