B-cell acute lymphoblastic leukemia (ALL)
Concord, NH United States
I am writing as a parent of a cancer survivor. My daughter, Avery Smith, who is now 8 years old, was diagnosed at age 3½ with leukemia. In 2016, our then 3-year-old daughter Avery was complaining of muscle aches, backaches, and for a solid week was running a pretty high fever. We took her to the doctor, and after a few visits, they weren’t really sure what was going on. After some bloodwork, our pediatrician called us and said Avery had some very concerning numbers. I will never forget the look on my wife’s face that next moment when the doctor told her that it looks like leukemia and we need to get to the ER immediately. A few hours later, Avery was admitted to the hospital.
The next day the cancer team confirmed that Avery had B-cell acute lymphoblastic leukemia (ALL). Needless to say, our world was turned upside down, and it might be one of the darker days of my life. Things were so confusing at that moment, I had tears flowing the entire ride up to the hospital. I definitely broke state laws by using my cellphone to google what leukemia was while trying to coordinate care for our 8-year-old son back home. But when I walked into the hospital, things weren’t so dark anymore. There were still tears, but I immediately felt comforted and confident that Avery was in good hands. In no time, she was set up to all the right machines and had already had her bone marrow extracted. Things were all a blur, but I am pretty sure she had a spinal tap done as well. I was expecting to walk in and see her in pain and very scared. To our surprise, she was perky and laughing. She had toys, movies, stuffed animals, arts and crafts, and was calling the nurses by name. Avery had everything she could ask for, and every person who walked into her room made her feel so comfortable. She was not acting like she was in a hospital. It was like she was in the greatest playroom on the planet.
Things became more real for us when a team of doctors and nurses showed up to Avery’s room carrying her first dose of chemo. Child Life Specialists were on hand to help explain everything to us and comfort us. Nutritionists were there to help us with meal planning. The doctors sat with us to make sure we understood what caring for Avery would look like. In no time at all, we were armed and ready to support Avery in her journey ahead. We learned what the treatment plan was going to look like for the next 2½ years. This plan would include weekly visits to the hospital, daily medications, visiting nurses, surgeries, and major limits on her exposure to other people and places. We knew this was going to be our new normal, and we were going to be at the hospital a lot.
In that meeting, we learned a lot about all the support organizations out there as well, like The Leukemia & Lymphoma Society (LLS). We have been active contributors and participants in all the LLS events that come our way — the Big Climb, Light The Night, Pennies for Patients, and recently the 150 Mile Challenge. Avery loves Minecraft and is already signed up to be a participant in the Build Competition. The LLS events were so inspirational for Avery and us as a family, and when they were happening around Avery's treatment, they were welcome distractions. Avery is now 8, in third grade, and done with her treatments. She is doing wonderfully in all aspects of her life and is committed to helping others fight their battle the way people helped her.