ASK is an organization that truly makes life better for kids with cancer. Just spend five minutes with ASK kid Campbell who is one of ASK's biggest fans and an ASK kid now in her teens. Campbell was diagnosed with Acute Lymphoblastic Leukemia with the positive Philadelphia chromosome, a rare leukemia for children, when she was six years old.
"It's my job to make sure that all ASK kids know that they can be functional, contributing members of society regardless of their diagnosis or disability," lovingly states Alma Morgan, ASK's education coordinator and education team member at the Children's Hospital of Richmond. Alma's position is just one of the professional positions supported by ASK funding and a key member of the administrative team that keeps ASK kids on track academically, while in-patient or in clinic.
Doug Keefer attended a small fundraiser with his son, Ben, while visiting from California. Ben, one of the founders of Mustaches 4 Kids - Richmond, wanted his dad to hear about one of M4K's primary partners, ASK Childhood Cancer Foundation. After five minutes of listening about the purpose, programs and services in which ASK provides to pediatric cancer children and their families, Doug was "all in for ASK."
"I was so overwhelmed by the caring and targeted way ASK is able to touch families as they go through the unimaginable. I wanted to learn more and I knew I had to become part of their team," said Doug.
Just six months ago, Grady was a very different little boy, always complaining of leg and stomach aches and sleeping much of the day away.
Today, Grady is a typical four-year-old boy who loves long nature walks, summers at the pool, and lots and lots of running outside. His mom, Daniele is abundantly grateful for his energy and enthusiasm for life. "Looking back at his short life, I realize he's always been kind of sickly, with several ear and strep infections, and flu and stomach issues," says Daniele.
When Grady and his family flew to Texas for Thanksgiving in 2019, his health took a turn for the worse and he was uncontrollably sick the entire flight back to Virginia. He never fully recovered from this episode and was eventually diagnosed in April 2020 with B-Cell Acute Lymphoblastic Leukemia, the most common type of pediatric leukemia.
"Your baby has Wiskott-Aldrich Syndrome," heard Malia Gregory. She was familiar with the rare gene mutation because her cousin passed away from the syndrome 25 years prior. Caused by a genetic mutation in the Wiskott-Aldrich gene and carried by the mother, one in one million boys are born with the abnormal immune deficiency disorder. Small and only a few weeks old when diagnosed, Emmett was going to show everyone how mighty he could be.
When Emmett experienced abnormal bleeding after his circumcision, and then again when he had a simple procedure on his tongue, doctors knew that something was wrong. Tests proved to be negative for leukemia, a natural assumption for Emmett's symptoms, but then Malia remembered her cousin, who had similar symptoms when he was born. Malia and her husband, Michael, had genetic testing, which showed Malia was the carrier for the mutated Wiskott-Aldrich gene.
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.
Alma Morgan, M.Ed., an Educational Consultant for ASK and the Pediatric Hematology/Oncology Department at the Children’s Hospital of Richmond at VCU, hears questions like these every day, and she understands parents’ concerns. “Many children with chronic illness often have late effects of treatment that include: attention difficulties, short term memory challenges, and slower processing speed,” she explains. “In addition, we are seeing more anxiety than ever, for children, teens and even their parents.”
While Morgan is hopeful that teachers and administrators have been working hard to create an effective and meaningful curriculum for online learning, she acknowledges that there’s no such thing as a one-size-fits-all program, especially for students with chronic and complex medical challenges.
Parents may feel a sense of powerlessness about this new mode of teaching and learning, and wonder whether it will work for their child. However, there are things they can do to help support their child’s unique needs:
“Parents are going to have to be proactive and work closely with the teachers and school personnel to see that their child’s unique needs will be met in this new instructional setting,” says Morgan. “Now, more than ever, parents need to be actively involved.”
“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.