Leroy Reed is an adult survivor of Acute Lymphoblastic Leukemia, a diagnosis typically reserved for children. When his newborn baby, Skylar, began running a fever which spiked to 103.7, he knew from experience that something was wrong.
“We spent three days in another hospital’s pediatric ICU before we were transferred to VCU Health System. My wife, Traci, was completely overwhelmed. Having a cancer diagnosis for your child is a parent’s worst nightmare, but I knew once we were at VCU, everything would be OK” recalled Leroy.
At six weeks of age, Skylar was diagnosed with HLH, rare immune disease, in which the immune system no longer works properly by producing too many antibodies. In Skylar’s case, her body didn’t have an infection to fight, so her body started attacking itself. Leroy and Traci were told that no genetic link exists to Leroy’s previous cancer.
Skylar started chemo the day she arrived at VCU, which lasted four months until she had her first bone marrow transplant, bone marrow donated by a stranger. “We’ve been told Skylar’s donor is a 35-year old man who didn’t hesitate when given the chance to save our daughter. He’s our hero, and he gave enough marrow to last Skylar a lifetime, if she needs it,” chokes Leroy.
She did need it, having her second bone marrow transplant one year later. “Her engraphment started to decline, so we elected to have a second transplant,” explained Traci. “We wanted to be proactive this time, rather than reactive.”
“And the ASK chaplain, had the ability to show up just when we needed him most,” continues Traci. “I would see him coming and I knew everything was going to be alright.” ASK financially supports the chaplain position, as well as a child psychologist and child life specialist in the clinic at the Children's Hospital of Richmond at VCU. “We are forever changed because of the kindness we’ve experienced.”
Connor was diagnosed with Acute Lymphatic Leukemia (ALL) at age 3. He had more than four years of chemotherapies following a National Children’s Hospital protocol, but ALL couldn’t stop this bright and strong boy from becoming the talented young man he is today.
“We had great days and we had not-so-great days,” laughs Jane. “I became his tutor, sounding board, confidant and friend. I’ve always been so impressed with his ability to face difficult circumstances head-on, with determination and hard work. His faith in God is so strong and he prayed every morning before school.”
Praying is something else Jane and Connor are comfortable doing together. While attending an ASK Summer Camp, the children had to take cover because of a tornado warning. Connor asked Jane to pray with him because he was scared. “Well, now we can’t be worried,” said Connor after their prayer. “We prayed about it, so now it’s God’s job.”
“Mrs. Gordon is family,” says Connis Tennessee, Connor’s mom. “She’s Connor’s honorary grandmother and she was even in our family Christmas card picture one year. She knows Connor as well as we do and she is sunshine to us.” Jane jokes that she would follow Connor to the University of Hawaii if that’s where he chose to go. “I’ve always told him that I had his back if he needed me, and I meant it. I hope we have many more years together.”
ASK funding supports online tutoring, an after-school enrichment program and the First STEP preschool program, which is one of only two preschools in the country dedicated to serving pediatric cancer patients. Jane Gordon has been with ASK for more than ten years, serving as a First STEP teacher, After School Enrichment tutor and Summer Camp helper.
“My background is elementary education with a Masters degree in learning disabilities. I get these kids and their individual needs, and I love my job,” gushes Jane. “I tried to retire but they wouldn’t let me! I’m so happy to be with these kids every day.”
“An experience like childhood cancer will either make or break a family,” says Russell. “We thank God for this journey he gave us, and for Mrs. Gordon. We asked God to take care of Connor and to let us love him, and not only have we loved him but so has Mrs. Gordon. She has given her time and love and things money could never buy. We have so much to be thankful for.”
Mrs. Gordon probably won’t retire any time soon, if ASK families like the Tennessee’s have anything to do with it. Thank you, Jane, for your tireless and selfless gifts of time and expertise and joy!
1. Adopt-a-Family & Shop
Update: All families and young adults are now adopted - thank you for your big hearts! If interested in still lending a hand, we would be grateful for your support in shopping for a toy or gift card as outlined below.
Since COVID-19 started, 30 children have been diagnosed with cancer here in our community. ASK estimates that at least 40-50 families with a child on active treatment could use extra support during the upcoming holiday season. Adopters will receive a wish list from the family to shop from. Gifts will need to be wrapped and delivered by December 14th to the ASK office at 5211 West Broad Street, Suite 102. Drop-off times will be coordinated following social distancing guidelines. Your generous gifts will alleviate stress while providing comfort to families taking care of a child with cancer.
2. Purchase a Toy for a Child or Gift Card for a Teen
Help us get ready for this year's socially-distant ASK Holiday get-together by purchasing a new toy valued $25-$30 of gift card of equal value (Target, Walmart, Amazon, Michael's, Old Navy, DSW, Starbucks). No stuffed animals, please.
Toys and gift cards can be shipped or dropped off during a scheduled time by December 4th to the ASK office (5211 West Broad Street, Suite 102). We welcome your thoughtful gifts after that date, which we'll use for inpatient visits and to help our kids celebrate treatment milestones and birthdays throughout the year.
3. Don't have time to shop but want to help?
Monetary donations to are always helpful to make sure no family is overlooked, especially those families diagnosed in December. A gift of $30 helps to buy a holiday toy for a child, $300 to adopt a family of two or $600 for a family of four.
“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.”
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.”
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.
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.