I’m still in awe of what happened at Seattle Children’s on Jan. 3, 2017. My words will never do justice to the feelings we experienced and the miracle we had the privilege to be part of. Avery, my then 11-year-old daughter, had been diagnosed with a rare, highly aggressive brain cancer. She had been through months of grueling chemotherapy and radiation treatments, but without surgery nothing she endured would have mattered: her tumor was simply too large to tackle with chemo and radiation. The surgery was risky and giving the green light was the most difficult decision I’ve ever made, but that day in January ended up being the happiest of my life.
Many superheroes wear masks, but it turns out they also wear scrubs sometimes, too. My heroes are two remarkable neurosurgeons named Dr. Richard Ellenbogen and Dr. Amy Lee, who took a risk to save my daughter’s life. Many times during Avery’s treatment, Dr. Ellenbogen would say, “Love the child more than you hate the tumor.” He fully embodied that mantra in each interaction he had with our family and we embraced his words like an anchor in rough seas.
A risky surgery
The decision to proceed with surgery was not an easy one for any of us. Avery’s tumor was located smack dab in the deepest part of her midbrain. It’s often called “the soul of the brain,” an area that includes the thalamus – a gland that interprets hearing, touch, taste and motor signals for processing in other parts of the brain, as well as regulates consciousness and sleep. Because of this, it’s almost never operated on. Avery’s tumor had grown into her thalamus and was pointing down to her brainstem. Not only was the location extremely difficult for the surgeons to reach, but even if they did get there, they could not cut into the thalamus at all – the most microscopic nick of a scalpel would be devastating for our girl.
Unprepared for a miracle
Honestly, we would’ve been absolutely thrilled if Drs. Ellenbogen and Lee had come out of the operating room that day and told us that they were able to safely remove some of the tumor – that Avery was alive, and her spirit unharmed. We had prepared ourselves for the fact that we might never see her walk again, or that she might survive but with significant, heartbreaking deficits. We prepared as much as we could for every possible scenario, except the one that played out on that long January day. We never dared to think that the doctors could get 100% of Avery’s tumor while protecting what made our daughter herself. Never. But we also never expected to receive the kind of love we were showered with. I’ve never experienced or seen anything like it before. That tumor may have tried to take a part of her, but with our talented team and our incredible community surrounding us, it didn’t stand a chance.
After 10 long hours of excruciating waiting during Avery’s surgery, I walked into the recovery room and saw her smiling face. She whispered, “Hi, Mama.” A miracle. It was the happiest moment of my life. Perhaps the happiest moment of your life will look nothing like you’ve ever dreamed, and I hope that you’ll remember our story as proof of what’s possible.
Since that unforgettable day, Avery has overcome some initial slight deficiencies, and I am beyond thrilled to report that she is absolutely herself – as funny, quick, strong and beautiful as ever. Most importantly, she is tumor- and cancer-free!
Clinical trial offers lifeline
If Avery’s cancer came back today, her body could not endure a repeat of the treatment she’s already been through. But thanks to another of my Seattle Children’s heroes, there is hope on the horizon. Dr. Nick Vitanza, a brain tumor expert at Seattle Children’s Cancer and Blood Disorders Center, recently launched BrainChild. It’s a clinical trial focused on delivering better treatments and potential cures to kids with aggressive or recurring brain cancer. This immunotherapy trial is wonderful news for hundreds of kids like Avery, whose survival is shadowed by a persistent fear of a relapse with no known treatment. With this trial, we now have an option that didn’t even exist yesterday.
Trials like this wouldn’t happen without heroes like you who support Strong Against Cancer, a national fundraising initiative working to develop cures for childhood cancers.
Thank you from the deepest part of my midbrain (!) and most certainly from my heart, to the Seattle Children’s experts who helped make our miracle happen – and the donors who support pediatric brain tumor research. You are the reason we are where we are today. You give us hope for a healthier future for Avery and all kids with brain cancer.
Avery Berg (second from left, with her sister and parents) wowed the crowd with a speech at the 2017 Seattle Run of Hope. Co-sponsored by Seattle Children’s Pediatric Brain Tumor Research Guild and Four Seasons Hotel Seattle, the fun run raised more than $570,000 for pediatric brain tumor research.