By Emily Robison

Our son Blake is 14 years old and eight years post bone marrow transplant. He recently had his long-term follow-up appointments with Seattle Children’s and Seattle Cancer Care Alliance. The news was encouraging. His blood counts continue to look excellent, and all of his blood-forming cells still come from his donor.

While we celebrate these milestones, it’s important to remember that the transplant did not cure his Fanconi anemia. It gave him something incredibly valuable, more time, but FA is still part of his life.

As he gets older, we’re entering a phase when cancer surveillance, especially for oral cancers, becomes critically important. Blake is currently participating in an NIH study using oral swabs designed to detect oral cancers at the earliest stages. For individuals with FA, early detection truly is the best treatment, as many cannot tolerate chemotherapy and radiation the way the general population can.

Preparing for high school

This year, Blake starts high school. Middle school wasn’t easy. Like many kids with FA, Blake is much smaller than his peers, and those differences become even more noticeable during those years. He struggled with confidence and was having a difficult time academically.

Last year, we found an incredible tutor who not only helped him catch up in school but also helped him believe in himself again. He transitioned into general education classes and finished the year with mostly A’s and B’s.

Discovering a passion for fishing

One of the biggest blessings this past year has been watching Blake discover a passion for fishing. He spends hours watching YouTube and Instagram videos, teaching himself new knots, techniques and anything else he can learn. Almost every day, he’s searching for a new pond or small lake to explore.

We’ve been dropping him off at local ponds, where he’ll happily fish for five or six hours, sometimes by himself and sometimes with a friend. This summer, Blake competed in his first youth bass fishing tournament, hosted by an amazing local nonprofit whose volunteer captains donate their boats and time to mentor the kids. There were 30 captains and 60 young anglers participating. Blake and his teammate finished second overall, and we couldn’t have been prouder.

As a parent of a child with FA, it’s incredibly hard to watch your child struggle with things that come more easily to others, whether it’s sports, school or simply feeling like they fit in. Fishing has given Blake something that FA never could: confidence, purpose and a place where he truly shines.

I’m definitely not much of a fisherman myself, and honestly, it’s not my favorite hobby. But I absolutely love hearing him tease me after he catches 15 fish while I catch … zero. Yes, that actually happened.

More than anything, I love seeing him find something that brings him genuine joy.

Healthy doesn’t mean cured

We are incredibly thankful that Blake remains healthy. But healthy doesn’t mean cured. Fanconi anemia is always there, quietly in the background.

While life may look normal from the outside, the reality is that we know Blake’s journey will almost certainly become more complicated over time. Recently, we’ve watched several FA families lose children and loved ones. Those reminders are heartbreaking and bring us back to the reality of this disease.

We also recently attended the FA Family Retreat at The Painted Turtle in California. It was wonderful to reconnect with old friends and meet new families who truly understand this journey. One of the highlights was watching Blake find a group of boys his age who love to fish, play baseball and simply be normal teenagers together. Those connections are priceless.

Thank you to everyone who has continued to support Blake and our family over the years. Your prayers, encouragement and kindness have meant more than you’ll ever know.

We continue to celebrate every milestone, cherish every season and remain hopeful for the future while supporting the ongoing search for better treatments and, one day, a cure for Fanconi anemia.