It’s just a stomach virus…
June 2021 was a turning point for our family that we never saw coming. Naomi had just turned seven years old. She was struggling with stomach issues for a little over a week and as far as we knew, there wasn’t anything to be concerned about.
I’m not a mom who rushes to the doctor, but something about this stomach ‘virus’ did not sit right in my gut. Mother’s intuition, I suppose. I called the doctor and they had one appointment left that morning. I asked Naomi to come in from playing so that I could take her to the doctor, even though at that moment, she looked and acted just fine.
I asked the doctor to just check her out because of the stomach issues and my gut feeling that something was going on. The doctor agreed she looked fine, but did an exam and sent her for some bloodwork just to be thorough and appease me. We left and went on with our day.
About an hour later the doctor called me because her bloodwork didn’t seem right, and the doctor wanted a redraw. We went back in and unfortunately the levels were correct. Naomi’s hemoglobin was 3.1 and platelets were 6. She was in bone marrow failure, in desperate need of transfusions and a bone marrow transplant. We still didn’t understand why this was happening though. We were rushed by ambulance to Walter Reed Medical Center. About two weeks later and after tons of testing we discovered Naomi has Fanconi anemia (FA).
Getting connected to FARF and the FA Community
We had never heard of FA. It’s such a heartbreaking diagnosis to get for your child, who just a few weeks before, was a ‘super healthy’ kid who rarely got sick. It was overwhelming to try to play catch-up on such a rare and unknown disease. There were several people in the FA community and at the Fanconi Anemia Research Fund (FARF) that reached out to us to help bridge the knowledge gap and calm the grief of a diagnosis that had just uprooted the trajectory of our family as we knew it. Those people who embraced us with love and knowledge were invaluable during that time.
Naomi with her parents
Bone marrow transplants and beyond
We quickly moved to transplant. Naomi received her first bone marrow transplant October 2021 at Cincinnati Children’s Hospital. No donors were available, so her brother, a half match, was her first donor. Any transplant is a tough process, and this transplant went as expected for the first 50 days or so. Then the BK virus caused a takeover of the donor cells and the transplant began to fail. Even after some attempts to save this transplant, it failed and the search for another donor began.
The best match we could find was a 6 out of 10, but that was our only choice. We had to move forward. In February 2022, Naomi received her second bone marrow transplant. The workup for this transplant was tough and the recovery hit her hard with lots of complications. She really didn’t start feeling normal again until end of January 2023. The one year mark was February 2, 2023 and her counts are looking great!
As parents, watching Naomi go through all she went through from June 2021 until recently was no easy task. It was heartbreaking. Naomi is a warrior.
We are just now feeling like the dust is settling on a whirlwind that hit our family out of nowhere. Looking back, this journey has taught our family so much. The amount of love and support our family received during this season has opened our eyes in ways we couldn’t have expected from our local community, family and friends, the FA community, the kindness of strangers and the selflessness of a donor.
Our faith has given us a river of peace through this storm. Naomi has inspired us with her grit and strength. Our 10-year-old hero son stepped up twice to donate bravely, without hesitation, for his sister. Our other kids have made us so proud with their endurance and sacrifice throughout this process. We’ve witnessed beauty from ashes throughout all of this.
Looking forward, we have hope. We are not naïve to the potential cancers that may be in Naomi’s future, but the amount of dedication to research and progress that keeps being made is encouraging. No matter where this diagnosis takes us in the future, we know we have a very big FAmily out there supporting us.
