When Jon Longenecker started with ASK to create services and programs for our families in the Fredericksburg area, he saw an opportunity to create something amazing. As a retired special education teacher, he was accustomed to creating new and different approaches to learning and social challenges with adolescents and young adults, and he knew that he could help build the same type of programming and services in Fredericksburg that are offered to young pediatric oncology patients in Richmond, ASK's home base.
“The more I learn about ASK and its mission of making life better for children with cancer, the more I fall in love with this organization and what it accomplishes on a daily basis,” says Jon. “I wasn’t aware of the learning and social difficulties that children with cancer can experience until I discovered ASK and all of the ways that ASK reaches each child, sibling and parent. I’m more convinced than ever that we can help mitigate some of the challenges these children face during treatment and in survivorship.”
The moment we've been waiting for has finally arrived! Earlier today, the state budget was signed and approved by Governor Youngkin. This means that children with cancer will receive dedicated state funding for the FIRST TIME in Virginia’s history.
In a nutshell, this new funding will:
Aaliyah’s favorite saying is, “Never give up!” That constant positivity helps Aaliyah face life’s challenges, like being born with Down’s Syndrome, and battling Acute Lymphoblastic Leukemia.
When Aaliyah was 12 years old, she received new braces on her teeth. But when her mouth continued to consistently bleed, her mom, Karen, knew something wasn’t right. Her dentist recognized the symptoms of leukemia, and immediately sent Aaliyah to the Children’s Hospital of Richmond (CHoR) at the VCU Health System, where she spent the next three months in the hospital.
“I thought she had an infection, not cancer,” remembers Karen. “My world fell apart that day we got the blood test results.”
Erika Carson knew she had found her calling when she joined Trilogy, a company formerly dedicated to virtual tutoring of school-aged children. When that company changed its business model, Erika founded Brain Bodega, with a focus on online academic mentoring that provides concierge academic services. She also wanted to continue and strengthen the existing partnership with ASK as we work with childhood cancer patients and their siblings while they go through treatment and head into survivorship, all while trying to succeed in school. This year, we celebrate the 5th anniversary of our online tutoring program with Brain Bodega as our trusted academic partner!
“This partnership is deeply personal for me because I am a childhood cancer survivor of Acute Lymphoblastic Leukemia who experienced latent effects of chemotherapy,” recounts Erika. “I had ‘chemo brain,’ and struggled in graduate school. I hatched the idea for Brain Bodega while working on my PhD and knew that I could create a program that specialized in helping kids with trauma.”
“Some of our instructors and kids have been together for years, and we’re seeing real success stories as a result of our partnership."
At two years old, Rowan was a super happy baby, and her family was living near Dallas, Texas. When she became lethargic and started having trouble breathing, her parents took her to an urgent care facility thinking she had a bad cold. However, she was quickly taken to the PICU and she was starting chemotherapy treatments the next night for Pre-B Acute Lymphoblastic Leukemia.
Rowan spent six weeks as an inpatient at the Children’s Medical Center in Dallas and needed to be intubated for more than two weeks to help her breathing. She started the induction phase of her chemotherapies and steroids, and in the midst of treatment, her dad’s employment transferred the family to Virginia. “Of course, we were nervous about the continuum of treatment and how to navigate a new hospital system, but the ASK staff greeted us and made us feel welcome as we entered the new doors,” says Rowan’s mom, Devon. “We didn’t know anyone in our new town, and were new to Children’s Hospital of Richmond, but ASK made us feel like family immediately.”
“Life came to a screeching halt,” says Vivian, when talking about the day her then 11-year-old daughter was diagnosed with T-Cell Lymphoblastic Lymphoma. “Sydney went from riding horses every day and activities with her Boy Scout troop to being out of breath on very short walks. We were so involved in our children’s activities, with busy school and work schedules, and then this overwhelming thing called pediatric cancer came into our lives.”
Sydney became very sick, very quickly. Within a few days, she was diagnosed, had surgery to insert tubes to drain fluid from around her heart and lungs, and started her more than two-year regimen of chemotherapies. Although her regular chemo treatments make her extremely nauseous, Sydney finds comfort in her animals and the crafts and games that Ms. Katie, the ASK Child Life Specialist, brings for her when she’s in the ASK Clinic.
Seven-year-old Kennedy loves gymnastics and practices it at least an hour a day, so when she suddenly stopped wanting to go, her mom knew something was wrong. Athena, Kennedy's mom, thought maybe she was being bullied. However, it wasn't long after Kennedy had a series of fevers that they drove to their pediatrician's office and found the answer.
Once Kennedy's pediatrician ran her blood work, they saw the low blood counts and broke the news "likely leukemia.” Athena immediately rushed home, packed a bag and headed to VCU Health. Doctors confirmed the diagnosis later that night, and Kennedy was in surgery the following morning. On May 12, 2021, she had her port placed and began chemotherapy as part of her treatment plan that will span nearly two and a half years.
We could (and did!) put an album together of Tim Cosgrove grilling at ASK summer camp, but there's more to Tim than being a grillmaster. Tim is now President of the ASK Board of Directors and helping to lead the charge in raising the level of care for children with cancer. And, to think, it all started with one simple invitation.
In 2015, Tim was asked by a co-worker (who happens to be married to Miss Katie) if he would sponsor the ASK 5K & Fun Walk. Tim, then general manager with CMA's Colonial Honda, immediately agreed. “We have a very active volunteer committee at work, and once we started working with ASK, we were hooked,” explains Tim.
Tim went on to join the ASK development committee in 2017 and he has served on the ASK Board of Directors since 2018. In between the years, Tim has given back in numerous ways. From rolling up his sleeves for event set-up to wrapping a car for his ASK walk team to closing the dealership so employees could participate in ASK events.
It's that time of the year again, and we're gearing up to make the holiday season a special one for our ASK kids and families! With shipping delays and shortages expected this holiday season, we could really use your helping hands to fill Santa's sleigh. Will you join us in helping to make the holiday season a joyous one for our ASK kids and siblings?
We're hosting our annual holiday party as a Tacky Lights Drive-Thru event on December 5th to keep our kids and families safe. We need our village to make the magic happen!
"I can remember the exact moment we learned of Javi's diagnosis. It was certainly a rough day. But no time was wasted and we immediately started receiving phone calls to schedule further tests, which started our journey at the Children's Hospital of Richmond at VCU. Within days, Javi had a port inserted and started chemotherapy. It was a whirlwind, but we had no idea of the tornado that was about to hit us," shares his mom, Amy.
ASK Kourageous Kid Javi is a typical five-year-old who loves to play baseball and soccer and runs around in his firefighter and police uniform. He loves books and is now learning to read in kindergarten.
Today Javi is healthy, but less than two years ago, in early May 2019, he began having large clusters of swollen lymph nodes in his neck. His pediatrician knew something was wrong and conducted a series of blood tests, ultrasounds, X-rays, PET scans, and a biopsy of the most prominent cervical lymph node, Javi was diagnosed with Stage 3S, Epstein-Barr Virus Positive (EBV+) Hodgkin's Lymphoma.