“This child has fight in her.” Words that Lillian’s family has heard more than once in her long battle with Actute Myloid Leukemia (subset 6).
Diagnosed when she was seven years old, Lillian’s leukemia diagnosis – usually reserved for the elderly population – is one of three pediatric-documented cases in the world in children. At every turn, Lillian has fought cancer, multiple affects of experimental treatments and chemotherapy, and most significantly, Graph vs. Host Disease common among transplant recipients, with grit and determination.
ASK has been working behind the scenes to provide both in-patient and out-patient clinic services for Lillian and her family, including chaplain support, summer camps and tutoring.
“Our kids have spent a number of birthdays and holidays in the hospital or in clinic and the ASK staff has always made us feel special,” continues Tina. “It is a very aptly named organization because, literally, all we have to do is ask for something and there is always a positive answer. Someone is always there to ease Lillian’s burden or just smile and say hello. We’re very lucky to have them, and are so grateful.”
Left: Lillian and Michelle working on a collage during ASK After-School Enrichment. Middle: Lillian and her mom, Tina, smile during the ASK Kourageous Kids Party. Right: Lillian and Michelle during the Kourageous Kids photo shoot, July 2019.
Charming. Talented. Motivated. A big dreamer with the ability to make those dreams come true. Cancer survivor. Xavier Kirkland is an 11-year survivor of Acute Lymphatic Leukemia (ALL), but he’s not letting anything stand in his way of becoming an acclaimed chef.
“I think of different plating options all the time,” laughs Xavier. “When I was diagnosed with ALL at age nine, I had no idea where my life would go or if I would even live to be 20 years old. Now I have a career plan and a goal of owning the best restaurant in Richmond someday.”
Xavier will graduate from the J. Sargeant Reynolds Community College’s Culinary Arts program in May 2021 and says that wouldn’t have been possible without the Launch Project program, one of the survivorship programs ASK provides for young adults.
“ASK’s Launch Project coordinator, Michelle Johnson, contacted me and asked if I’d like to go to J. Sarg to get my degree through the PAVE Program for Adults in Vocational Education. I had to think about it at first, but then I realized that I love to cook and the Culinary Arts program would be a perfect fit for me.”
“We work as a team at the Children's Hospital of Richmond at VCU's Survivorship Clinic, so there is a pediatric oncologist, psychologist, social worker, educational consultant, nurse practitioner and myself assigned to each survivor. Together, we support the survivor in determining educational goals, career strategies, job searches, and intervention when needed to allow for special accommodations. We’re seeing huge successes for our kids.”
ASK keeps in touch with all patients well past the end of their treatment specifically to provide not only medical follow-up but social, educational and career services into young adulthood. “We host young adult retreats and regular activities to foster comradery,” continues Michelle. “It’s a great way for our young adult survivors to connect with people who truly understand their unique needs into adulthood.”
Xavier is just one of the many Launch Project success stories. He’s currently going to school full-time and has an internship as a line chef at the Boathouse Restaurant in Rocket’s Landing. ASK helped him purchase his chef uniform and knives to begin his internship, but Xavier has supplied the drive and determination necessary to succeed.
These days, Xavier serves up good food, and these words of wisdom: “I want them to know that they will feel like giving up, but they should never give up. I felt like an outcast because none of my friends could understand what I was going through when I was on chemo, but you’re not an outcast. Do what you want to do. Be who you want to be. I had to let that notion sink in, but then I realized that I can do whatever I set my mind to do. So can you.”
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.