There is no way to fully understand the anguish a childhood 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 brain tumor diagnoses, treatments and complications.
We welcome YOUR personal stories and experiences. Through our collective sharing we will find strength and comfort. Submit your story.
|Katie’s headache won’t go away||Katie had been complaining of headaches, in retrospect, for about a year. I chalked it up to a taste for grape flavored children’s Tylenol and a flair for the dramatic….|
|Friends of Jaclyn||FOJ matches a child in need of love, support and friendship with a college or high school sports team based on geographic basis. After the “adoption” is completed, the child becomes an extension of the team where a unique bond is formed between the team members, the child and the family. The benefit to all is a personal loving support network that creates a unique bond. The result of the FOJ “adoption” is the child feels involved and each individual team member gains insight into the value of helping others. The child is involved in the team through text messaging, emails, phone calls, facebook and twitter postings. Through the wide reaching press coverage, FOJ has helped improve the awareness of pediatric brain tumors. FOJ has completed over 230 “adoptions” in over 20 different sports. We currently have over 1,000 schools on a waiting list.|
|Never Giving Up||My name is Ayis.Š When I was young I had dreams of being a top athlete and going to the Olympics like my father had done before me|
|Kylie’s Saga||It began with 5 year old Kylie complaining of a headache.The pain would last briefly and then she acted fine. Looking back I feel guilty for thinking she was just being dramatic but who actually assumes the worst about their child?|
|Hit by a basketball, Megan discovers her JPA||Megan is a cheerleader at her middle school. While cheering at a school game,she got hit in the head with a basketball that seemed to just come flying out of the air. Because she felt nauseaous and looked a bit disoriented her coach suggested she might have a slight concussion and said we might want to take her to the ER to have her checked out.|
|Tara’s Journey||Tara’s dad shares his very personal story of his daughter’s near brush with death and the stunning realization that this journey is far from over.|
|I Hope||Carol Baan’s moving poem about hope has inspired hundreds of other parents and caregivers to never lose hope when their child has cancer.|
|Through the Eyes of a Child||9 year oldŠ Andrew, shares his views on the diagnosis and treatments for his PLGA, Pediatric Low Grade Astrocytoma, a brain tumor.|
|A Patient’s Perspective||Emily, age 16, is a PLGA survivor and she shares her insight into her experience after being diagnosed with a Juvenile Pilocytic Astrocytoma (JPA). (Video)|
|Haileys Chemotherapy Visit||HaileyҒs parents share their experience taking their 2 year old daughter, Hailey, for her weekly chemotherapy treatment for her PLGA.|
|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 brain tumor.|
|The Day Our World Changed||Witten by Zackary’s mother, Traci P, this story describes the journey from tumor 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, its Genna who does the hard work of survivorship. But since her battle began so young, she doesnt 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.|