Courageous. Spirited. Happy. Passionate. All words that describe Kayleigh, a twelve-year-old girl who also happens to have cancer. Kayleigh was diagnosed last year with Metastatic Ovarian Cancer, or “Yolk Sac,” stage 3, a type of cancer only seen in one percent of diagnoses worldwide.
In spite of her constant chemotherapies, multiple surgeries to remove tumors as they spread and radiation treatments, Kayleigh continues to enjoy playing with her sisters and cousins, keeping-up with schoolwork, and is a gifted artist. “I love anime,” explains Kayleigh. “I love making-up characters and stories. It’s relaxing to draw, and I enjoy Cosplay and dressing up as some of the characters I create.”
Kayleigh’s cancer is spreading, but she is a fighter. “I’m not done yet. I’m not giving up,” defies Kayleigh. She understands that her tumors are unresponsive to treatments, but is committed to living life to its fullest and will soon start another trial of chemotherapy in hopes of slowing the growth.
“I have a princess room!” yells Ava as she enters her newly decorated bedroom. Thanks to the generosity of the Richmond Homearama sponsored by the Home Builders Association of Richmond, a long-time partner of ASK, Ava received a total room make-over. Each year, HBAR donates Homearama proceeds to ASK and participating builders in the show sponsor room make-overs for ASK kids who need a boost in spirit.
When Holden was nine months old, his parents thought his low-grade fever was a cold or maybe strep throat. But a simple blood test showed an abnormality and within hours of being sent to the emergency room, Holden's entire young life changed.
Holden was diagnosed with Acute Myeloid Leukemia (AML), but this wasn't his family's first experience with this disease. Holden's dad, Josh, was diagnosed with AML in 2006 when he was 19 years old and carries the CEBPA genetic mutation for the disease.
Holden's treatment included six months of intensive chemotherapy and long weeks of hospitalization. ASK became a lifeline for the family, and providing spiritual, emotional and financial support.
“When we received the initial cancer diagnosis, we were completely overwhelmed,” recalls Gentry Busic. “ASK became an amazing partner, without whom we could not have found our way.”
Gentry’s son, Talon, was eight years old when he was diagnosed with Stage 1 Large B-Cell Lymphoma. After weekly chemotherapy treatments and three spinal infusions, Talon entered remission and hasn’t looked back.
Now 10 years old, Talon plays baseball, loves to be outside on his bike, swims for his neighborhood swim team, and is crazy about Disney. His family is grateful for his recovery, and the constant care they received from ASK.
On March 10th, 2020, ASK Childhood Cancer Foundation was honored with the Richmond History Makers Award under the category of "Creating Quality Educational Opportunities." ASK was one of six local nonprofits and individuals recognized for their work in our community. The awards are given out each year by The Valentine Museum. ASK Executive Director Amy Godkin and Educational Coordinator Alma Morgan received the award on behalf of ASK's education team. Alma has been an educational consultant and passionate advocate for pediatric cancer patients and survivors in our community for thirty years. ASK provides educational support services from preschool through post-secondary for patients and survivors in Central Virginia. ASK also provides educational support across the state through its educator conferences, educational toolkits and advocacy work.
Berkeley Kellum, 15 years old, is a straight A student at Lancaster High School and is in the Early College Academy there. He will graduate from both high school and Rappahannock Community College with an Associate’s Degree. He’s a baseball player and an All-State swimmer for his high school, and a t-ball coach for younger kids. And now, Berkeley can add childhood cancer survivor to his resume.
The Kellum’s particularly enjoy the ASK 5K & Fun Walk in the spring. Last year, they had more than 40 friends and family members walking in support of children with cancer and this year their team will continue to grow. “This is a beautiful event that really celebrates the kids and recognizes what they go through. It’s something our entire family enjoys!”
Photo: ASK families hugging after the Moment of Remembrance at the ASK 5K & Fun Walk on May 4, 2019.
Written by Rich Catlett, ASK Chaplain
Whether sudden and unexpected or due to a long chronic illness, the death of a child is the most stressful and traumatic event that any human can experience. It is unlike almost any other type of loss because it goes against the natural order that life teaches us. A parent is supposed to bury and grieve the loss of a grandparent, parent or aunt because they are older and have had a longer life. But burying a child is unnatural.
An unnatural event makes us question everything in our lives because it rocks us to the core of who we are and shakes the foundations of our beliefs. Because of this, getting into a natural life order again after the death of a child is incredibly difficult. Life for the grieving family is now more like being in a haze and less like any reality that existed before. The time period after the death of a child is an unnatural state of being, and therefore it is important to remember the phrase, ‘When you are ready’. Here are some examples.
When you are ready…
Part of my role as the chaplain of ASK is to work with bereaved families. You may be hearing from me in the near future as I attempt to offer support to you and your loved ones. Please know, I do not take it personally if you do not respond right away. I will still be available to you ‘When you are ready’.
If you are ready now, please feel free to email me to set up a time to talk. Until then, be patient with yourself as it takes time to heal from such a deep wound.
ASK dads Rich Chandler (left) and Sean Adams (right) reviewing the 5K course route with ASK volunteer Henry Finn.
It’s 4am, and Rich Chandler is busy setting-up orange street cones for the next ASK Childhood Cancer Foundation race. He’s led the logistics for the ASK 5K & Fun Walk and ASK Donut Run for the past fifteen years, and he doesn’t plan to stop any time soon.
You can see Rich's dedication and team spirit at this year's ASK 5K & Fun Walk which is celebrating 15 years! For ASK parents like Rich, it's so much more than just a walk. Learn more at ASKwalk.org.
Several days a month, Brynna Allen can be found pushing her baby dolls through the ASK Pediatric Hematology/Oncology Clinic at the Children’s Hospital of Richmond at VCU.
Katie Barber, ASK Child Life Specialist, knows the name of every baby doll, and can tell if they’re happy or grumpy that day. That’s because Katie has been with Brynna and her family since she was diagnosed with acute lymphoblastic leukemia at age two, and she touches every family that is treated at the clinic.
“Brynna’s diagnosis was so dire that we were told she may not survive through the night she was diagnosed,” remembers Brynna’s mom, Karen. “We couldn’t know what was ahead of us, but the staff of ASK did, and they’ve been with us every step of the way. Nothing phases Katie, and she’s always there with a smile and an idea to help us through the next phase of treatment.”
From diagnosis to adult survivorship, ASK provides programs and services to help make life better for pediatric cancer patients and their families, including financial assistance.
"It’s never easy to ask for financial assistance, but when we learned about this portion of ASK’s services, they made it so easy for us. For instance, when a portion of our roof needed to be replaced, they not only provided financial assistance, but also gave us recommendations for companies that they have worked with. There was no stress for us, just deep gratitude,” says Karen.
Brynna and her brothers look forward to the ASK events and parties. “The first year of diagnosis and treatment were very aggressive and hard. We couldn’t attend many of the functions, but now we look forward to attending events as a family. This year we’re really looking forward to the Mommy & Me Spa Day in March! I also love that ASK includes Brynna’s brothers in so many events, like the Candy Land party, family picnic, annual Holiday Party, and so much more. It means the world to us that the siblings of these amazing kids, are taken care of and included as well.”
Karen is grateful for the impact ASK makes on her family every day. “ASK provides a tremendous amount of services for pediatric cancer patients, newborn through young adult. Everyone gets the same amazing and supportive care that is above and beyond what we even know we need. Before Brynna’s diagnosis, I’d never heard of the ASK. Now, I can’t imagine going through this without the clinical and administrative staff of the ASK. They are truly amazing!”
“Molly is feistier than ever, and she never ceases to amaze us,” says Molly’s mom, Roxsey. “Cancer made her tougher. She has no fear!”
Being fearless helped Molly fight a Wilms' tumor on her right kidney at age six. While other first graders were having fun on the playground, Molly was in the ASK clinic for rounds of chemotherapy and radiation, and recovering from major surgery.
“I want everyone to know about ASK and the amazing services it provides," explains Rosxey. When a family is presented with the overwhelming challenge of having a child with cancer, ASK is there to help the whole family. There is no other organization like ASK!”