Six-year-old Jimmy Spagnolo was born to dance. Anytime this inspirational little boy hears music, his body begins to move and groove and his face lights up with a great big smile.
So when he was given the go-ahead by staff to ring the brass bell at Children’s Hospital of Pittsburgh on February 2, Jimmy didn’t just dance — he gave an ecstatic, memorable performance that he and his family have been waiting six long years to see.
Jimmy was diagnosed with a a brain tumor in September 2010, at just 4 months old. And as his mother Lacie Spagnolo tells Babble, his prognosis was grim:
“He had borderline hydrocephalus (water on the brain) due to the tumor blocking where the cerebral spinal fluid usually drains. They usually treat hydrocephalus with a shunt, but more than likely if they shunted Jimmy the tumor would have spread into his stomach and the stomach cancer would kill him.”
When Lacie and her husband Jim Spagnolo asked the doctors if their son would live, their response was one that no parent ever wants to hear: “He probably won’t live to see his first birthday,” they were told.
After consulting with each other and Jimmy’s doctors, Lacie and Jim realized they had only one option for son: chemotherapy. And after just three treatments, the family was overjoyed when an MRI showed the tumor had shrunk by more than 10% — huge news, considering all doctors were hoping for was that the tumor would remain stable. But even more of surprise was the fact that Jimmy’s tumor would continue to either shrink or stabilize on and off for the next six years.
“We have faced some tough moments, made some extremely hard decisions, and on top of parenting in general, it tests your will and has challenged the heck out of us,” Lacie tells Babble. Still, she and her husband wouldn’t trade the tough moments for anything. “It’s been one of the biggest privileges and greatest honors of our lives to love Jimmy for almost seven year now, and to watch him grow into this incredible, loving little boy,” says Lacie.
And when asked about where their strength comes from, these gracious __parents answered with the one thing that has guided them throughout this entire journey: “There has always been hope.”
“The day Jimmy was diagnosed, we needed to decide how we wanted to handle all of this,” explains Lacie. “We could either lie in defeat or choose to live and love Jimmy with all that we have … we chose the latter.”
Their love was obvious to anyone in the hospital last week as Jimmy grabbed that bell and rang with such force, signaling the end of his latest round of chemotherapy treatments.
“The room was charged with electricity and you felt connected to every heart in there,” Lacie tells Babble. “Everyone loved that moment and loved Jimmy and he could feel that,” she adds. Jimmy even got so excited after ringing the special bell and doing his celebratory dance, that he lifted his Superman shirt and patted his little tummy.
And this moment also meant a lot to the hospital staff because Jimmy exemplifies what we all long for: hope.
“He has made this look easy when it’s anything but easy,” explains Lacie. “He dances before, during, and after chemo treatments and he is a light that lights up every person he meets.”
And now, after enduring all of it, he is finally ready to celebrate.
Last week, the Children’s Hospital of Pittsburgh shared Jimmy’s celebratory dance on its official Facebook page, along with the caption:
“Jimmy finished a yearlong chemotherapy treatment yesterday and rang the bell with his family and the staff to celebrate. The bell signifies so many emotions — it can signify the sound of tears, strength, fear, courage, doubt, satisfaction, relief and happiness all coming through as one as people around them cheer this accomplishment. The sound of that bell resonates in more ways than one. The emotion in the room is just unbelievable.”
Patients traditionally ring the bell — a sound which represents being cancer-free, or reaching a significant milestone in treatment, before leaving the hospital. His celebratory ringing of the bell last week begins the journey of waiting to find out how Jimmy will respond to the treatment. As his mom puts it: “His current prognosis is to sit and wait.”
Jimmy will get his next MRI scan in March, which the family hopes will show the tumor has shrunk further or stabilized, and then he will be scanned every three months for a year.
“If the scans remain stable within a year, then [the scans] will be every 4-6 months for another year,” says Lacie. “And after two years of stable scans, a tumor is considered in remission, so that is our goal.”
While the family is anxious to move forward and see if the chemo is doing it’s job, they are often reminded of the love and hope that has carried them this far in their journey.
“When Jimmy was diagnosed, there was no good news,” says Lacie, “so my father-in-law asked the hospital staff if there was anything positive they could share with us and the doctor said: well there is a lot of love in this room and sometimes that is enough.”
And if anyone doubts the strength and love of this remarkable family, all it takes is a few minutes with Jimmy to be convinced that great courage can come in a small package.
“There is nothing that will hold me back, Mom,” Jimmy often tells Lacie.
And so far, it’s clear that nothing has.