I can remember the exact moment we learned of Javi's diagnosis," shares his mom, Amy. "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."
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.
Javi's active treatment consisted of four 21-day cycles of chemotherapy, with the first three days of chemo administered inpatient. Initially scheduled for six full cycles, Javi and his family received the news that he was a "rapid responder," and his cancer had dramatically decreased after the first two chemo cycles.
"It was the best possible scenario," continued Amy, "and after four cycles of chemo, his cancer was gone! The doctors determined that he could discontinue chemo, and now we do follow-up appointments at the Survivorship Clinic every three months. In October, we will celebrate Javi's two-year anniversary of being cancer-free!"
"Perhaps one of the most phenomenal things about ASK is that this organization continues to provide support, even after diagnosis and treatment," says Amy. "We are so grateful for all of the events and recognitions of birthdays and special events but to know that we will be part of this family for the rest of our lives is incredible! I can't tell you how much it means to us to know that we will never be forgotten."
Javi's infectious smile and boundless energy are impossible for us to forget! Thank you to our ASK community for helping to be there for this family and making life better for kids with cancer!
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.
"My wife, Emily, and I have always made philanthropy part of our lives, but the more I learned about ASK, the more I wanted to be a dedicated volunteer," explains Kevin. "I have so many connections to ASK, both professionally and personally, which made all of the events fun, but the talented staff and the overall mission of ASK - to go above and beyond for these amazing families - inspires me. I want to be part of the upward trajectory of this phenomenal organization."
Kevin's enthusiasm is infectious and he's always willing to do whatever it takes to help ASK dream big for making life better for children with cancer and serious blood disorders. From generously sponsoring events to introducing family and friends to the mission to helping plan ASK's Above & Beyond 20/20 Gala when it turned virtual, Kevin shows up with a big smile and is ready to crush any fundraising goal.
Currently, Kevin is part of the charge fundraising for the new ASK Family Center, scheduled to open in June 2021.
"This is our chance to make a huge difference for families right here in Central Virginia. The ASK clinical and administrative staff step into the unknown every day for these families. That's the hard work, done with so much genuine love and caring. However, from my perspective, it's very clear what needs to be done to better serve these precious children and how we can support that effort. While the $275,000 goal is lofty, it's our turn to 'level-up' for ASK!"
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.
Little did Michael know how close to home ASK services would hit. Just a few months after being introduced to ASK, the child of one of his groomsmen in his wedding was diagnosed with a rare blood disease and another close friend's child was diagnosed with a rare childhood cancer.
"I've held both of those kids since they were born and their diagnoses rocked me. With childhood cancer diagnoses on the rise, you just never know when it's going to happen to someone you love," reflects Michael. "We're so fortunate that I have a company that's growing and we can help. It's important for us to be involved in ASK Childhood Cancer Foundation because this organization is clearly making lives better for children with cancer and reaching families in ways you can't imagine until you go through it."
The new ASK Family Center is just one more way ASK is serving their kids and families. The new space will help expand resources for the special social, educational and psychological needs of pediatric cancer patients. Additional financial resources are needed to meet the $275,000 goal. Michael, his wife Luci and all of the employees of the Lucent Group are excited to be a part of the effort.
"I've spoken to parents of kids impacted by ASK and as a donor, it's incredibly satisfying to hear how a gift from the heart can enhance their traumatic experience. This organization is so well managed and they are doing great work. I'm honored to say I'm an ASK supporter!"
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.
"I can't imagine my cancer experience without the help and guidance of ASK staff and the programs they provide for kids," gushes Campbell. "Actually, my entire family is involved in the ASK 5K (Team Soup!) and other special events and we have benefited so much from all that ASK has to offer. Even with my older brother, Parker, has attended programs for siblings. The new Family Center will allow us to do even more fun activities, reach even more kids and most importantly, help create more joy for all of us. That's amazing!"
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 educational consultant and education team member at the Children's Hospital of Richmond. "I help them become advocates for themselves and tell their brave, courageous stories. It's vitally important that they be able to express themselves." 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. He attended an ASK summer camp and that's when he decided to be a part of the ASK team and become a game-changing member for ASK children, families and staff.
Doug and his wife, Sharon, have committed a matching gift of $50,000 toward the new ASK Family Center where children diagnosed with cancer in our community and their families can gather for education, emotional and social support.
"I've been so impressed with the leadership of the ASK administrative team," continued Doug and "I know that ASK will manage my gift well. But I've been most impressed with the kids themselves. As I listened to them talk about their diagnosis, treatments, progress and realities of having cancer - some only five years old - I was inspired and humbled by their courage and positive attitudes. It was one of the most emotional afternoons of my life. They are my heroes and helping ASK is now part of my DNA."
Doug and Sharon's game-changing gift is the first toward the $275,000 goal to help double ASK's physical space and grow programming space. Until February 14th, the Keefers will match all donations, up to $50,000. "These kids are fighting and they need our help to keep fighting," says Doug passionately. "Resources are so necessary and I say to everyone that is reading this, "how can you not help?"
"Caring for these children is a passion that I now share with the ASK clinical and administrative staff and my son. Ben's dedication has exposed me to a whole new opportunity for giving. This is one of the greatest bonds a father can have with his son and I want all ASK parents to have that opportunity with their children."
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.
"Most people don't realize that ASK is with every family, every step of the way. They aren't just here for the frontline diagnosis, but for years and years after treatment. All of us are so blessed to have ASK in our lives."
"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!