Updated: Mar 28
"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.
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!"
"It's hard to believe that our normal was picked up and spun around, and we had to find a new normal," reflects Amy. "When you find out that your child has cancer and your family is going through the active treatment phase, it's almost as if you don't realize anything else that's going on around you in your life. You become fixated on the present, just focusing on the fight one day at a time. Then just as quickly as that crazy tornado blew in, it was gone! I remember looking around my life and thinking, 'What just happened?'
Amy continues, "You don't realize when you're going through something like this that you aren't fully processing your thoughts and feelings; it's almost as if you're living in a constant state of adrenaline. It was only after we received the results of the PET scan that stated, 'No scintigraphic evidence of active disease,' that we began to process our feelings and heal as a family."
Since his diagnosis, ASK has been with Javi and his family, and Amy describes the support as their "steady rock and constant companion." One of the most impactful programs for Javi is ASK's First STEP Preschool, where kids with cancer and their siblings can attend pre-school while still in treatment.
"We were so concerned that he would fall behind in learning and social skills, but First STEP provided a way for Javi to continue being a typical preschooler. I love that ASK sees a need and then figures out a way to solve the problem."
Javi is now experiencing some late-term, cognitive effects due to chemotherapy and ASK educational coordinator, Alma Morgan, is there to work with Javi's Kindergarten teacher and assistant principal to develop a 504 plan to ensure he receives the accommodations he needs to enhance his learning.
"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!