ASK CHILDHOOD CANCER FOUNDATION - Blog

Meet ASK kid Lillian

8/19/2020

“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.

While living in Italy where her dad was working for the US Navy, Lillian experienced difficulty breathing. After several trips to pediatricians and emergency rooms, she was diagnosed with “some form of leukemia” and sent back to the States for an official diagnosis.

“Lillian wasn’t expected to survive the flight home or the first night in the PICU. The odds against Lillian were so great,” shared Tina, Lillian’s mom.

Within two weeks, a tracheotomy was inserted to help her breathe and she started chemotherapy. This was the beginning of a six-month hospitalization for chemo- therapy and physical rehabilitation, but Lillian defied the odds and continued to improve.

Photos: Lillian being flown back to the States for medical care.

Until one year later, when Lillian’s leukemia relapsed. She had a life-saving bone marrow transplant, now sharing a unique bond with her older sister who was her donor. Lillian’s determination to beat cancer has been an inspiration to everyone around her, especially her mom.

“Over the years, we’ve watched her go from the sickest child in the hospital to a healthy 13-year-old,” says Tina. “Lillian is an identical twin and she’s fought so hard to keep-up with her sister physically and academically. She still has physical therapy for stamina, but she’s come so far, against crazy odds, and has never, ever given up.”

Photo: Lillian beating cancer for the second time.

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.

Launch Project: Meet Xavier

8/4/2020

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 realized that we had educational programming and services for pre-school through high school childhood cancer survivors, but there was a gap for high school students wishing to attend college or vocational schools, and for those who were beginning their job search. The Launch Project started four years ago to address these needs,” explains Michelle.

Michelle connects students to colleges, universities and trade schools. She also provides referrals to other service agencies, as well as works with potential employers and college campuses to help childhood cancer survivors who may need special accommodations as a result of their cancer diagnosis.

Michelle Johnson, ASK Launch Project Coordinator.

“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.”

Last year, ASK began a partnership with 1st Choice, a college counseling service in Richmond, VA, to provide a three-day college boot camp for high school pediatric cancer juniors and seniors and their siblings. Topics for the seminar included everything from how to navigate and write essays for the Common College Application, to completing the FASFA financial aid forms and searching for financial aid.

“It was an amazing three days for the kids and their parents, and we plan to continue the partnership this year,” says Michelle. “Rachel Loving, owner of 1st Choice, is amazing with the kids and very intuitive about their specific and unique needs. It’s one of my favorite programs provided through the Launch Project.”

Rachel Loving with 1st Choice providing college counseling support to ASK's rising juniors and seniors, July 2019.

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.

“I think about the people in the ASK Clinic every day, and every day I am grateful for the smiles, hugs and true care and concern I continue to receive from the ASK folks,” says Xavier. “They have impacted my life in so many ways, and now it’s my turn to give back to all those kids who are just starting their ASK journey.”

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.”

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.