ASK CHILDHOOD CANCER FOUNDATION - Blog

Meet ASK kid Kayleigh

7/14/2020

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.

Kayleigh’s mom, Ashley, says it’s important for her to be part of the decision-making process. “It’s her body and we have all medical discussions with her so she can ask questions and have input. Her maturity and ability to make difficult decisions at such a young age absolutely amazes me.”

An inspiration to all who meet her, Kayleigh’s spunk and grit keep her strong. “Even when she feels awful, she has a smile on her face. She just keeps pushing through the pain. That kid is a force to be reckoned with,” exclaims Ashley.

“When we’ve needed help staying positive, ASK has been with us to lift us, support us, provide financial assistance and pray with us,” continues Ashley. “Little things like random gift cards in the mail, treasure boxes for the girls when we’re in clinic, the back-to-school shopping spree, food vouchers for when we spend all day in clinic or when Kayleigh is in-patient, and fun activities like Prom have been our lifelines throughout this process.”

Eleanor Roosevelt described courage as “grace under pressure.” Kayleigh is a powerhouse of courage, grace and life, and an ASK kid who’s showing everyone how to live through your most difficult moments with a smile.

Kayleigh gives her sisters a hug during the ASK Kourageous Kids photo shoot, July 2019.

Kayleigh and Miss Katie, ASK's child life specialist, enjoying the clinic Valentine's Day party.

Meet ASK kid Ava

6/11/2020

“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.

Ava was diagnosed with Pre-B Acute Lymphatic Leukemia when she was 15 months old. She had flu-like symptoms, but when her mouth started bleeding and she developed petechiae, both common symptoms of ALL, her pediatrician sent her to VCU where she was immediately diagnosed.

Like all ASK kids, Ava is a fighter. She has survived many lengthy in-patient hospital stays, multiple chemo changes as her protocol evolves, two port surgeries, blood clots and now daily shots of blood thinners, PICC lines and spinal taps. Now three, she seems to take it all in stride and even helps the nurses in the ASK Clinic set-up her shots, blood tests and chemo.

“She’s smart and catches on quickly to procedures,” says Ava’s mom, April. “She’s handled everything much better than many of the adults in her life."

ASK kid Ava enjoyed a tea party during her dream room reveal with Schell Brothers and designer Shannon Tootle, May 2019.

“So much was thrown at us in the beginning,” continues April. “We’re trying to understand the medical terms and help our child, and work, and it’s all very overwhelming. Then ASK staff showed-up with information, and financial support for our meals, and presents for Ava, as well as helped us emotionally deal with everything.”

ASK-funded chaplain, Rich Catlett, checks-in daily or weekly depending on the family’s needs. “He prays with us and for us and that means more than I could ever say. Mary Jo (ASK's family support coordinator) makes us feel welcome in clinic, sends cards and gift cards in the mail to us and to Ava, and Katie (ASK's child life specialist) always has something to keep Ava occupied while we’re waiting to see a doctor. We couldn’t do this without them.”

Ava gives a big smile during the Kourageous Kids photo shoot at the VMFA, July 2019.

Ava received a special surprise for her third birthday when friends and neighbors hosted a parade past her house. Both Rich and Mary Jo were part of the parade. “They help make an awful situation so much better, and are just great people. We can’t wait to returning the love once we’re in a better place.”

This year, Ava is looking forward to participating in more ASK events, like the Build-a-Bear day, the Holiday party, and the annual Mother-Daughter Spa Day. “She was too sick to do many of the activities in her first year of diagnosis, so there are so many activities we want to do. We were able to participate in the Spa Day,” shares April. “It was one of her best days!”

Ava wore a sparkly mermaid outfit to her surprise birthday parade, May 2019.

Meet ASK kid Holden

5/26/2020

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.

"We’ve been social distancing before there was social distancing,” says Holden’s mom, Jess. “Initially, we couldn’t participate in the fun activities ASK offers for patients and their families because Holden was in the hospital or going to the ASK Clinic two or three times per week. We felt so isolated from family and friends, and that’s when the folks of ASK became so important to our family.”

Like many ASK families, Jess and Josh had to make the decision for one of them to stay home to manage Holden’s healthcare. Within days of Holden’s diagnosis, Jess quit her teaching job and they became a one-income household.

“We were so worried about finances and then we heard that ASK helps families financially. ASK paid two mortgages and some of our electric bill. What a huge relief!”

“Our ASK family is always in here for us. Whether it’s surprise gift cards in the mail, remembering our birthdays, or just a smiling face in clinic when we’re having a bad day, ASK is always working in the background to support our entire family.”

Holden’s four year old sister, Piper, attends First STEP Preschool at First Baptist Church. First STEP was designed to meet the unique educational, social and emotional needs of young children with chronic illness, and includes siblings.

“ASK is this amazing organization that provides such a wide variety of programs and services for families diagnosed with a childhood cancer,” Jess continues.

“They get what’s most important -- not the stuff, but the caring and connection. Everyone is so helpful and caring. Respite care on my birthday, mother-daughter spa day that made our daughter feel so special, and just having someone who truly understands our situation is a so comforting. Holden is in remission right now, but we don’t know what the future holds for him. We do know that ASK will be with us every step of the way. “

Meet ASK kid Talon

4/7/2020

“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.

“We know that we couldn’t have gotten through such an ordeal if it weren’t for the constant love and support from the staff of ASK. Little gifts and notes and even just a kind word, not to mention the patient services and support groups that ASK provided to our entire family, were vital to our success.”

Gentry stresses that ASK is a local organization, and your donations help kids here in Central Virginia. “I think it’s so important that we support this amazing organization that is going above and beyond for children with cancer right here in our community,” continues Gentry. It also means that ASK can create and modify programs to best serve patients and survivors in our community.

“Our support from ASK began from the moment of diagnosis,” says Gentry. “ASK knew that Talon’s diagnosis would affect our entire family, so their sibling and caregiver programs have been as important to us as the care they’ve given to Talon. We could never say thank you enough!”

ASK Honored with Richmond History Makers Award

3/12/2020

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.

Meet ASK kid Berkeley

3/10/2020

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.

Diagnosed with Langerhans Cell Histiocytosis in July 2018, Berkeley decided that surgery and chemotherapy would not stop him from accomplishing anything in his young life. After surgery to remove a tumor in his jaw, Berkeley had one-year of chemotherapy, finishing in January 2020. His mom, Kelly, says this life changing experience was made easier by the support services of the ASK.

“We couldn’t have done this without ASK,” explains Kelly. “It’s so hard for the entire family to juggle the stress of diagnosis and treatment, struggles with siblings and the day-to-day fight to just remain normal. Thank goodness ASK staff is always present to answer questions and provide help when we need it most!

“ASK’s spiritual, emotional, educational and financial support has been the foundation of our ability to navigate all of this,” continued Kelly. “Our entire family has benefitted from ASK’s programs and services.”

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!”

When You Are Ready

2/26/2020

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

On July 31st of 2019, I joined the team at ASK and it has been a wonderful six months of learning and orienting to VCU. Before joining ASK, I worked as a chaplain for a pediatric palliative care and hospice program in the Richmond area. In that role I was able to work with some amazing families where a beloved child died. Through my five years of service to this organization, I was able to gain a deep perspective around grief and loss. Today I would like to address an aspect of bereavement that I feel is very important. I will refer to it as ‘When you are ready’.

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…

Share with someone you do not know well the story of your child and all of the beautiful and unique qualities that made them who they were.
Share your experiences with someone who is going through the loss of a child.
Talk to a counselor about the death of your child and how it is affecting you and your family.
Ask a trusted friend or family member to just sit and listen to you for a while without giving you feedback. And in turn, sit and listen to someone else share the stories of their heart without you giving them feedback. There is power and healing in being heard as you share your story.
Go on a trip somewhere your child loved to go or somewhere they always wanted to go. Go on the trip for them, and enjoy the things they would have enjoyed. Celebrate their life.
Reconcile a relationship with someone where there has been discord. You know better than anyone that life is too short for holding a grudge.
Doing these things will lift you out of the pit of darkness and allow you to step forward into a brighter direction.

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.

Volunteer Spotlight: Rich Chandler, ASK dad

2/20/2020

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.

“It’s important to me as a business owner and a human being to give back to our community and share our many blessings,” says Rich. “And we’ve been incredibly blessed.”

In 2000, Rich’s daughter, Kaitlyn, was diagnosed with a rare form of leukemia, Acute Myeloid Leukemia, typically an adult leukemia. At age three, Kaitlyn’s only chance of survival was a bone marrow transplant. Rich considers it a miracle that a donor was found in Germany, a military officer who flew back to the United States to provide Kaitlyn the bone marrow she needed to survive.

Now a senior at the Virginia Commonwealth University School of Engineering, Kaitlyn is healthy and looking forward to life after graduation in May, 2020, and Rich’s commitment to ASK is even stronger.

“We became involved with ASK because of Kaitlyn’s diagnosis. ASK was there for us every moment of Kaitlyn’s diagnosis and treatment, and I want everyone to know what an incredible team ASK becomes with every family diagnosed with childhood cancer.”

Rich says he’s a lifelong ASK volunteer, “I want to help spread the contagious positive energy that comes from the ASK administrators, clinicians and volunteers!"

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.

Meet ASK kid Brynna

2/5/2020

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!”

Meet ASK kid Molly

1/15/2020

“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.

When Molly began complaining that her stomach hurt, her mom took her to the pediatrician. After a quick examination, it became clear she needed to go to the Children’s Hospital of Richmond at VCU Health System for further evaluation. There, Molly received her diagnosis and surgery to remove her affected kidney within three days.

Now, Molly is back to soccer and loves to be on the water, fishing, boating and swimming. Molly’s entire family is grateful to the ASK Childhood Cancer Foundation for their enormous support through services and programming.

“We were so overwhelmed by Molly’s diagnosis and treatment, but we immediately felt the love of ASK staff who helped us navigate clinic and school and treatment. ASK treated our entire family, and provided support for her older brother Brooks, too,” continues Roxsey.

“I have friends whose children have been diagnosed with life-threatening diseases and they don’t have access to an organization like ASK. We are beyond fortunate, and that’s why we choose to give back to ASK by participating in the ASK 5K Run every Spring.”

Molly’s family participated in their first ASK 5K in 2019 and already have their team assembled for May 2020.

Molly enjoying a post-race snow cone at the ASK 5K & Fun Walk.

Molly in her happy place - on the water with family and friends.

“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!”

Molly with her parents at the ASK 5K & Fun Walk in 2019.

Molly and her brother, Brooks, at her ASK Kourageous Kids photo shoot.

Molly making new friends on her Make-A-Wish trip.