Nico’s Brain Cancer Fight: A Journey of Strength, Love, and Survival

My name is Michelle and I am the mother to a brave and courageous 5-year-old boy named Nico! Last summer, Nico started vomiting and having tired spells weekly and would sometimes smile with only half his face. I called his pediatrician with my concerns and after Nico got bloodwork done I was told that Nico is “fine and just dehydrated.”

A mother's intuition

A few weeks later he started showing muscle weakness on the same side of his body that he wasn’t smiling on. My gut knew this was something more than just dehydration so I decided to take him straight to Connecticut Children’s and thank God I did because they discovered a three-inch tumor on Nico’s brain. I will never forget the words, “We see a mass on your son’s brain.” It has seemed as though time has stopped the day we found out in October, yet at the same time is moving at lightning speed. 

The diagnosis no parent expects

It took us weeks to get Nico’s official diagnosis, CNS Neuroblastoma FOXR2-activated*, but we did find out a day or two after his surgery that it was a grade IV aggressive brain tumor. I fainted in the hospital when we found out; no one ever thinks something like this would happen to your child. It did not feel like real life. I had no idea the battle our family would face in the months to come. 

*This means that a protein called FOXR2, which acts like a "switch" to turn certain genes on, becomes active—usually because the DNA around it has been rearranged in some unusual way. These rearrangements can bring FOXR2 close to powerful DNA elements that activate it, even though it's not supposed to be active normally.

Our family went to Boston for 6 weeks while Nico underwent proton radiation therapy at Mass General Hospital. He handled the treatment better than I anticipated, with little to no side effects (other than hair loss). Nico is now currently undergoing six cycles of chemotherapy at Connecticut Children’s. Nico shows tremendous strength as he continues to play soccer & T-ball even throughout his treatment and has recently become very into Legos! 

>>Related: How to talk to kids about their own cancer diagnosis

Love and support from Connecticut Children's

Connecticut Children’s has been incredibly supportive throughout our journey. During Nico’s 9-hour brain surgery, we received updates via the Ease app which helped calm my worries while we were waiting. Nico even looks forward to coming to the hospital because of how amazing the staff is at Connecticut Children’s. He loves all the doctors & nurses so much! He enjoys going to art therapy with the Child Life specialists, seeing the therapy dogs come visit, and doing activities with Valentine the Clown. He also loves driving the Power Wheels vehicles into the OR anytime he has a surgery. 

Caring for the whole family

Connecticut Children’s not only goes above and beyond to make their patients feel better, but also the parents. There is a wonderful family resource center on the 2nd floor that Nico and our family love going to. There are also massages available for parents and caregivers there. Our social worker, Liz has also been incredibly helpful by giving us names of organizations that assist families financially and help them get the self-care we so desperately need.

A heartfelt "thank you!"

I will forever be grateful for Nico’s care team for saving his life that day back in October and those who continue to keep him alive today. I cannot thank Nico’s neurosurgeon, Dr. Martin, enough for safely and successfully removing Nico’s entire tumor and Nico’s oncologist, Dr. Cantor, and his team for providing the best care for Nico to give him the best chance at a healthy future. 

Thank you, Connecticut Children’s, for saving my son’s life, keeping a smile on his face even during scary moments, and everything in between.