Flynn’s Journey to Becoming Cancer Free

Every parent’s worst nightmare is having to watch their child suffer. Now imagine that the reason your child is suffering is that they are facing the very real possibility of their 2-year-old child—your precious grandson—dying of cancer. In the first moments, hours, and days of living in this reality, my grief was debilitating. I recall reminding myself to breathe. I was getting through life five minutes at a time.

And then, two weeks into this nightmare, our family received the greatest gift of all: we were given the privilege of hope. The results of Flynn’s liver biopsy concluded that his liver cancer was hepatoblastoma, a treatable form of pediatric liver cancer. Flynn was given a 60% to 70% chance of survival.

Not every family who finds themselves in this horrible situation is as lucky. I am Flynn’s grandmother, and I live half a mile away from him. My ability to be involved in the day-to-day journey of Flynn’s cancer care gave me a window into what families endure as they try to navigate a life-threatening illness with their child, and how crucial it is to have cutting-edge medical care available.

Over a seven-month period, we watched 2-year-old Flynn undergo 11 rounds of aggressive chemotherapy, surgery to remove 70% of his liver, countless overnights in the Center for Cancer and Blood Disorders at Children’s Hospital Colorado, gut-wrenching side effects from medications, and more blood draws, scans, and tests than most people have in a lifetime. Despite all of this, Flynn remained the positive, belly-laughing child we adore.

Although he is only 3 years old, I can say with certainty that I know who Flynn is deep down inside. I have watched him face real adversity and not let it change him. He is a true warrior.

Children’s Colorado provides care to children from all over the globe. It is a destination facility for serious illnesses. In addition to cutting-edge science, Children’s Colorado provides something equally important: a staff of capable, compassionate, empathetic, and wonderful people who make unbearable days bearable.

This holy trinity—hope, the true warrior, and the Children’s Colorado community—walked forward through a brutal battle that ended with Flynn being declared cancer-free. Flynn will continue to be monitored closely for signs of recurrence for several years.

Currently, he is on a three-month check-in schedule and must have blood drawn each time. These are hard and scary days, and the anxiety for everyone who loves him remains high because the stakes are so great.

On the first day we arrived at Children’s Colorado with a very sick child, we had never been a part of any efforts to raise money or awareness for pediatric cancer. Fortunately, countless others had come before us and contributed their time, talent and resources so children like Flynn could receive lifesaving care.

Now it is our turn. To help the next children who arrive for treatment, we created The Flynn Fund, which provides access to gene sequencing, an important tool often not covered by insurance. Gene sequencing allows scientists to tailor treatments to individual patients, helping save lives and reduce suffering.

The Precision Medicine Institute at Children’s Colorado is among the leading providers of pediatric gene sequencing in the country. Children’s Colorado is a community we never wished to join, but now that we are members, it is something we truly treasure.

As my daughter Natalie often says when speaking of the hospital, “We are the luckiest unlucky people on earth!”

As I write this, we are waiting for the results of Flynn’s one-year checkup to confirm his cancer-free status. These are difficult days. We do our best to remain optimistic, but the knowledge that recurrence can happen—especially in the early years after treatment—makes our hearts stop for a moment.

Our journey with Flynn’s cancer care continues, but so does our partnership with the team at Children’s Colorado. For that, we are grateful every single day.