It's that time of the year again, and we're gearing up to make the holiday season a special one for our ASK kids and families! With shipping delays and shortages expected this holiday season, we could really use your helping hands to fill Santa's sleigh. Will you join us in helping to make the holiday season a joyous one for our ASK kids and siblings?
We're hosting our annual holiday party as a Tacky Lights Drive-Thru event on December 5th to keep our kids and families safe. We need our village to make the magic happen!
"I can remember the exact moment we learned of Javi's diagnosis. It was certainly a rough day. But no time was wasted and we immediately started receiving phone calls to schedule further tests, which started our journey at the Children's Hospital of Richmond at VCU. Within days, Javi had a port inserted and started chemotherapy. It was a whirlwind, but we had no idea of the tornado that was about to hit us," shares his mom, Amy.
ASK Kourageous Kid Javi is a typical five-year-old who loves to play baseball and soccer and runs around in his firefighter and police uniform. He loves books and is now learning to read in kindergarten.
Today Javi is healthy, but less than two years ago, in early May 2019, he began having large clusters of swollen lymph nodes in his neck. His pediatrician knew something was wrong and conducted a series of blood tests, ultrasounds, X-rays, PET scans, and a biopsy of the most prominent cervical lymph node, Javi was diagnosed with Stage 3S, Epstein-Barr Virus Positive (EBV+) Hodgkin's Lymphoma.
When Kevin Williamson attended the ASK Above & Beyond Gala in March 2018, he had no idea how inspired he would be by the children he met that night. He had first learned of ASK when participating in M4K Richmond but the night of the gala is when his heart changed forever.
Kevin was so moved that he agreed to serve on the ASK Development Committee and be part of the charge helping to raise the level of care for children with cancer and their families.
Michael Pittman has a big heart for children so when a friend invited him and his wife, Luci, to the ASK Above & Beyond Gala in 2018, Michael was happy to attend and make a contribution. Michael and Luci's support didn't stop that night though. They later attended the ASK Fall Bash and then stepped as a gala sponsor through their company, Connected Solutions Group (CSG) and have brought CSG employees to the event to learn more about ASK's mission.
All of this has led to the CSG team making the new ASK Family Center a priority. "This new facility will impact kids with cancer right here in our community. I'm a native Richmonder and I love that I can help my neighbors and friends," shares Michael.
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.”