David came into our life on March 12, 2019. A beautiful baby boy, David was the perfect addition to our family of now four. In the first months, everything was normal. David was growing fine and hitting each of his milestones. Until one November week, when David wasn’t his normal cheerful 8-month-old self. At first, we blamed it on the antibiotics he had just started a few days prior to treating a “scalp infection” we thought he had.
My gut kept telling me something was wrong; this was not the side effect of the antibiotics. David was pale, his stomach was bloated and he refused to eat. We rushed him to the nearest emergency room where they ran blood tests, ultrasounds, X-rays, etc. It was after all the tests came back that the emergency doctor came in to tell us his blood test results.
“Your son has cancer.”
How did our lives go from being out Halloween night handing out candy to my son having cancer?
At that moment, my family’s life changed as my husband and I receive the worst news of our lives and we had a decision to make. Where should David be transferred? I remember asking the same doctor who gave us the news of his diagnosis where he thought we should go. He named all of our options and said, “Well you have options but I really think you guys should go to Nemours Alfred I. duPont Hospital for Children in Delaware.”
From the moment the Nemours ambulance picked us up to the moment we arrived at the PICU, I felt confident we had made the right decision. The moment we met Dr. Gresh, she explained to us, as his primary oncologist, what type of cancer David has. David was diagnosed with infantile acute lymphoblastic leukemia, and being diagnosed before the age of one put him at a much higher risk for complications from the chemotherapy.
We learned our treatment journey was going to be hard, with a long stay in the hospital –– at least the first 9 months. That meant spending Thanksgiving, Christmas, New Year’s, birthdays, and many more holidays in the hospital.
As if things weren’t hard enough, then COVID happened.
With COVID the hospital was forced to make many restrictions. We are thankful for them for they made us feel safe. But with restrictions, it also meant we could not see our family. Only one caregiver was allowed with David and no siblings were ever allowed to visit. Things were uncertain and scary, watching the news became something out of a horror show. For us there was no choice but to stay strong, David’s treatment had to continue.
Because my husband and daughter couldn’t visit us, our hospital team became our family away from home. All of his doctors continued to guide our way through treatment. His nurses became our familiar faces and very close friends, and Child Life became our rescue. Many were the days I needed to be rescued from the anxiety the news, and the changes all around us, created. Art therapy and playing Bingo every Wednesday became the light that pulled us through the dark days of COVID. I am thankful for the support the hospital provided for David and me.
Each round of chemo came with its own difficulties – from mucositis (pain and sores in the mouth) to horrible diaper rashes to nausea and many sleepless nights. The chemotherapy rounds were not easy but David finished them all with such strength and courage. One week he was battling the horrible side effect of mucositis combined with nausea and the following week after he was smiling and playing as if nothing ever happened. David is the definition of resilience, strength, and courage.
As we near the end of our very long hospital stay and David is close to starting the maintenance phase of treatment, I can’t help but look back and reflect on these past very hard months. We are nervous about what the future holds but also excited to continue with life. We will be taking home with us many memories and will hold all the people who helped us this far very near to our hearts.
David’s journey is far from over, treatment will continue for at least another year and a half but the hardest part of treatment is almost over. We have clinic visits ahead of us and more chemotherapy but the long hospital stays are hopefully behind us.
To the new parents at the beginning of their child’s cancer diagnosis, I have this advice: cancer is a horrible diagnosis no one ever wants to hear but don’t let cancer take your faith, your happiness, and your ability to see the good in life. Keep your eye on the goal and surround yourself with positivity. It’s one day at a time or sometimes one hour at a time. Be strong.
Many thanks to Rosa Mendez, David’s mom, for sharing his story. Rosa spent every single day of David’s months-long hospital stay right by his side.
