In August 2021, during Ava’s routine two-year wellness checkup, we learned that our world would change forever. She had mild bruising and wasn’t eating well, so we took her in for testing. The results were heartbreaking—Ava was diagnosed with leukemia. We were immediately told to take her to the ER at MUSC, where additional tests confirmed that she had B-cell acute lymphoblastic leukemia.
Now, just over three years later, Ava is in remission. Her most recent bone marrow biopsy shows no residual disease, which is an incredible relief. However, we still have a long journey ahead. Ava will undergo another biopsy in early December 2024, and if that shows continued remission, she will start a year of maintenance chemotherapy, which will last until December 2025.
Ava is such a bright light in our lives—sweet, funny, smart, sassy, and full of energy. But like any child undergoing treatment, she experiences anxiety. Her treatment is a marathon, not a sprint, and although she is young enough that she may not remember all of this in the years to come, her memory is very much intact right now. So, every week when we head to the clinic, she gets nervous. Extended hospital stays are especially hard for her to process, and she dreads them. This diagnosis has changed all of our lives, and every day is a balancing act.
As a result of Ava's ongoing treatment schedule, I am only able to work part-time. Her frequent clinic and hospital visits make a full-time job impossible. In August 2021, my in-laws moved in with us to help with Ava’s care, and their support has been a lifeline. They plan to move out in December 2024, which will allow us to begin to return to a sense of normalcy.
We are, of course, incredibly grateful that Ava is in remission. We’ve met so many other children along the way who are still in the fight, and we know how fortunate we are. But that doesn’t mean the journey has been easy. There are still so many uncertainties. We can’t make non-refundable vacation plans right now, for example. If Ava spikes a fever of 100.4°F, she has to go to the hospital within 30 minutes for IV antibiotics, and then return the next day for another round. That constant vigilance makes it hard to look too far ahead.
But there is hope on the horizon. We’re counting down to December 2025, when Ava will finish her chemotherapy. When that day comes, I plan to sign her up for group dance, music, and gymnastics classes. I can’t wait to see her enjoying those activities, meeting new friends, and being a kid again. For now, though, we’re keeping her away from large groups of older toddlers to minimize her risk of catching any viruses. The last thing we want is for her treatment to be delayed because of an illness she could catch.
Every day is a gift, and we are so incredibly grateful for the support of our family, the medical team at MUSC, and for the many blessings we have along the way. We look forward to the day when we can once again plan family vacations, celebrate milestones, and see Ava thrive—whole and healthy.