The Spark Has Ignited A Fire: How Rally’s Seed Funding Paved the Way for Dr. Volchenboum and the PCDC
At Rally Foundation for Childhood Cancer Research, we often describe ourselves as “philanthropic seed investors in the next great discovery.” That’s because Rally invests early and continues to invest as projects make progress. It’s also because we like to take a few risks when it comes to funding the more “unconventional” research projects. After all, it only takes one spark to light a fire, and that spark—that next great discovery—could pave the way to finding a cure. Dr. Sam Volchenboum’s Pediatric Cancer Data Commons (PCDC) was one of those “unconventional” projects that sparked a glorious fire—all because of Rally Kid Ruby, her father Dr. Jonathan Kaufman, and our shared desire to fund groundbreaking research for childhood cancer. How It Started It all started back in 2015, when Rally Kid Ruby was diagnosed with embryonal rhabdomyosarcoma, a form of soft tissue cancer. Being the...
My View Looking Forward
Before cancer, I was never a morning person, but now I love waking up in my home with the entire family under one roof. Most nights, I wake up around 3 am in a panic. Did I dream up this terrible nightmare that my 4-year-old son had cancer and had four inches of his leg cut off? I rush to Gus’s room to check on him and sometimes lay next to him. I tell him I love him to the moon and back and that I am so proud of him. I know these moments are what matter most in life. Right now, it is easy to get sidetracked by arguments over vaccine hesitancy or mask mandates that are still in place. I wish everyone would slow down and view this as an opportunity to help their neighbor. Believe me, it could be so much worse. I have watched a handful of families lose their children to childhood cancer and have been humbled and blessed by their friendship. We share the common bond of childhood cancer....
Discovering the Reality of Childhood Cancer Treatment
On our diagnosis day, we were told that our four-year-old Gus had Ewing Sarcoma. What doctors didn’t know was the particular type or variant he had. Tumor Sequencing Tumor sequencing is vital, as some variants of Ewing’s sarcomas have poorer outcomes, require specific drugs, and prohibit the use of other drugs. The variant determines the treatment plan. Parents need to know the type of cancer their child is fighting- and if the hospital doesn’t know, parents should demand to have the tumor genetically sequenced. As Dean taught me, “The pathology report is king.” Treatment I could go on and on about the horrors of the treatment Gus endured: scary nights when our son’s heart was beating so fast it seemed as though he was having a heart attack… or beating so slowly that he was unresponsive; the endless needle pokes for blood and platelet transfusions; the horrific bowel movement issues;...
Gus’ Journey Through Cancer
Gus, my 4-year-old son, was chasing me down the stairs on our way to the basement for our early morning workout. This particular morning, Gus jumped from the stairs onto the floor and took an extra step. Something seemed off, but he didn’t complain after he landed, so we moved on with our day. That afternoon, Gus complained about pain in his leg when his mom, Heidi, picked him up from preschool. But by that evening, he was running around again. The following morning, he was limping, though not complaining, but by night he had a low-grade fever and intense leg pain. DIAGNOSIS The next morning, Heidi took Gus to Urgent Care, and after an X-ray, they were immediately sent to the Children’s Hospital. After 24 long hours and some preliminary imaging, Heidi and I were told by a seasoned diagnostic radiologist that he was 98% sure Gus had a bacterial infection in his leg. The radiologist...
Dear Presh
Dear Presh (a.k.a. Sarah), My heart gets a little heavy this time of year. I start to wonder why and then realize that it means another year has passed since I last saw you. Last held your hand. Last hugged you. You fought Ewing’s Sarcoma with such poise, grace and unwavering faith in the Lord that I could only stand in awe. I didn’t meet you and your family until after your first battle with Ewing’s. I actually remember exactly where we met and how we immediately hit it off. I remember we laughed and laughed. From there our friendship just grew. You visited the Rally office, filmed videos and spoke at Rally events. There were Subway and Chick-fil-A lunches. There were also relapses, hospital visits and doctor’s appointments that you invited me to. There are so many Presh memories. Indulge me as I recall a few. You found it so funny that any medical procedure, while it fascinated you,...
You Above ALL: Rally Kid Ava Paige’s Songwriting Story
A PATH TO SUCCESS Rally Kid Ava Paige has been writing songs and playing guitar for most of her life. She always dreamed of becoming a successful songwriter, and her natural talents put her well on her way at a young age. Ava has played live shows in Nashville for many years, even holding a standing gig at The George Jones since age 13. She has played iconic venues such as The Listening Room and The Bluebird Cafe and frequently participates in songwriter shows around town that include some major hitmakers. She earned several music industry awards and was named Best Singer/Songwriter in the 2019 Nashville Scene Readers Poll. A SHOCKING DIAGNOSIS With her music career traveling in the fast lane, Ava was delivered a blow just before her 15th birthday—she was diagnosed with acute lymphoblastic leukemia, or ALL for short. Gigs and songwriting were put on hold and replaced by hospital stays...
The Spark Has Ignited A Fire: How Rally’s Seed Funding Paved the Way for Dr. Volchenboum and the PCDC
At Rally Foundation for Childhood Cancer Research, we often describe ourselves as “philanthropic seed investors in the next great discovery.” That’s because Rally invests early and continues to invest as projects make progress. It’s also because we like to take a few risks when it comes to funding the more “unconventional” research projects. After all, it only takes one spark to light a fire, and that spark—that next great discovery—could pave the way to finding a cure. Dr. Sam Volchenboum’s...
My View Looking Forward
Before cancer, I was never a morning person, but now I love waking up in my home with the entire family under one roof. Most nights, I wake up around 3 am in a panic. Did I dream up this terrible nightmare that my 4-year-old son had cancer and had four inches of his leg cut off? I rush to Gus’s room to check on him and sometimes lay next to him. I tell him I love him to the moon and back and that I am so proud of him. I know these moments are what matter most in life. Right now, it is easy to...
Discovering the Reality of Childhood Cancer Treatment
On our diagnosis day, we were told that our four-year-old Gus had Ewing Sarcoma. What doctors didn’t know was the particular type or variant he had. Tumor Sequencing Tumor sequencing is vital, as some variants of Ewing’s sarcomas have poorer outcomes, require specific drugs, and prohibit the use of other drugs. The variant determines the treatment plan. Parents need to know the type of cancer their child is fighting- and if the hospital doesn’t know, parents should demand to have the tumor...
Gus’ Journey Through Cancer
Gus, my 4-year-old son, was chasing me down the stairs on our way to the basement for our early morning workout. This particular morning, Gus jumped from the stairs onto the floor and took an extra step. Something seemed off, but he didn’t complain after he landed, so we moved on with our day. That afternoon, Gus complained about pain in his leg when his mom, Heidi, picked him up from preschool. But by that evening, he was running around again. The following morning, he was limping, though not...
Dear Presh
Dear Presh (a.k.a. Sarah), My heart gets a little heavy this time of year. I start to wonder why and then realize that it means another year has passed since I last saw you. Last held your hand. Last hugged you. You fought Ewing’s Sarcoma with such poise, grace and unwavering faith in the Lord that I could only stand in awe. I didn’t meet you and your family until after your first battle with Ewing’s. I actually remember exactly where we met and how we immediately hit it off. I remember we...
You Above ALL: Rally Kid Ava Paige’s Songwriting Story
A PATH TO SUCCESS Rally Kid Ava Paige has been writing songs and playing guitar for most of her life. She always dreamed of becoming a successful songwriter, and her natural talents put her well on her way at a young age. Ava has played live shows in Nashville for many years, even holding a standing gig at The George Jones since age 13. She has played iconic venues such as The Listening Room and The Bluebird Cafe and frequently participates in songwriter shows around town that include some...