Jimmy Spagnolo, a first grader at Rogers Primary, just completed his final chemotherapy treatment after six years of receiving treatment. Jimmy was born with an inoperable brain tumor. Throughout Jimmy’s six-year journey of fighting his tumor, his family has been part of a very emotional story.
For his parents, Jim and Lacie Spagnolo, learning their son had these medical issues was a scary experience for both of them.
“It was very scary when it happened. Imagine having your worst nightmare and never waking up from it. I think you go through different stages of dealing with it. You are shocked, depressed, you go through the ‘why me?’ stages. It took a little longer to deal with it,” his parents said.
As the Spagnolo family sat in the doctor’s office waiting for results, there was no good news coming from the doctor.
“When we first got the news, I thought I needed to figure something out. I went into the shower at the hospital and was in there for a very long time. I was trying to figure out how I wanted to deal with it. I went through every aspect in my head,I went down every avenue and it was pretty dark,” Mrs. Spagnolo said. “Then I started thinking ‘what if I don’t believe the doctors? What if I just say Jimmy is going to be healthy and he is going to outdo it all?’ That’s the outcome I wanted.”
A variety chemotherapy treatments seemed to be the only option the family had to help their son.
“They wanted to put 3 or 4 different types of chemotherapy in him, just to throw everything at him, but Jim and I didn’t want to kill him with the toxins,” Mrs. Spagnolo said
In most cases, when the same type of chemotherapy is used, it becomes less effective and could possibly not work at all. In Jimmy’s case, the same treatment was used throughout his six years of treatment and proved to be successful in the end.
“Jimmy was a rare case. He had the same chemo work for him all 4 times, usually a chemo only works for the first year, maybe a second time,” Mrs. Spagnolo said
The hospital wanted to put a port into Jimmy’s chest to administer all of the different chemotherapy treatments at once. Jimmy’s parents asked if the hospital could somehow deviate from protocol and try one chemo treatment on Jimmy via IV.
At first, the doctor was hesitant and did not want to go against the normal protocol of the hospital.
“The doctor walked back in the room a minute later, it was really weird. She came in and said, ‘you know what we, are going to throw out protocol,’” Mrs. Spagnolo said.
That night, at just four months old, Jimmy Spagnolo had his first chemotherapy treatment.
The day after Jimmy’s first treatment, the family was sent home by the doctor. They were due back the next month for his next treatment. At this point, they were just sitting and waiting to see if the initial treatment helped. Although the parents were stressed, Jimmy’s attitude even as a baby was positive.
“Jimmy was such a happy baby during these times. He didn’t get sick at all,” Mrs. Spagnolo said.
At six years old, Jimmy received his final treatment and it lifted a weight not only off of his shoulders, but off of the family’s as well. Although Jimmy’s tumor isn’t completely gone this round is over.
“The best way to describe the moment when he finished was like inhaling a breath of relief,” Mrs. Spagnolo said. “It’s hard to watch him go through all of this so when he can take a break and go off of all meds, it brings us the greatest joy to watch him be a boy with no worries.”
Jimmy’s mother decided that she would share Jimmy’s story and make it known. She created a Facebook page titled “I’m praying for Jimmy Spagnolo” where updates of Jimmy’s journey are posted consistently. She also uses the page to provide inspiration and understanding to people who were going through something similar with their children as well.
With over 7,000 people liking the page and nearly 7,000 people following the page, the family has received comments and messages from people everywhere saying this page provides them with a sense of hope and how much Jimmy inspires them every day.
Through all of these stages, this never tore the family apart and they never let it affect the love and support that was brought in with the family.
“You always look at each other and all of your blessings. Lacie and I both have families that are very helpful. We got a lot of support, and we made a conscious decision, looked each other in the eye and said, ‘This isn’t going to break us, Jimmy deserves the best parenting that we can give and we were never going to go backwards, just keep moving forward and be positive through it all,’” Mrs. Spagnolo said.
During the times of treatments and sickness, not only was the family always keeping his/her heads held high, but Jimmy who was going through it all was always happy and never got down.
“We always focused on all of the good stuff and all of the cool things he got to do at Children’s Hospital,” Mrs. Spagnolo said.
Knowing how difficult it would be to keep an active three-year-old still enough to receive treatment, the family did whatever was in their best interest to make the stay as comfortable as possible.
“If we had to take Jimmy and he wanted to run around the hospital floor while hooked up to an IV bag, it was hard. Instead we put him in a red push car they had on the hospital floor, and took turns pushing him around while carrying the IV cart around for the 4 or 5 hours it took to complete the treatment,” Mrs. Spagnolo said.
“We made being at the hospital a reality for what it was for him. We understood the gravity of what we had to go through but we created an alternate reality of positivity and fun to help all of us get through it better,” Mr. Spagnolo said.
Jimmy’s moments of triumph are all recorded by his parents and family. This has always helped him for when he goes back to the hospital he can realize that he is going not to just be treated, but to be cheered on by everyone and go do the fun stuff that he always gets to do.
Even after being put under by anesthesia, which is supposed to make you feel dizzy for up to 24 hours, Jimmy was up an hour later dancing and wanting to have fun. He created his own state of mind with everything and never doubted being able to handle whatever the next phase was.
At the end of Jimmy’s treatments he got to ring the bell at Children’s Hospital to signify he was finished with his chemotherapy. For Jimmy this was a great experience and he was so happy when it was over.
“I felt great, happy and excited all at once. Also I felt loved by everyone who was cheering me on,” Jimmy said.
When Jimmy went back to school at Rogers he was greeted by all of his classmates and teachers when he walked into school.
“When I got to school everyone was yelling my name, and went I went into my classroom everyone gave me a hug all at once. My teacher said ‘don’t knock him over’ and then we had a dance party, too,” Jimmy said.
Since Jimmy was a baby, his family would always have dance parties and this is still one of Jimmy’s favorite things to do.
“We lived our lives for 3 months at a time, and at the end of those three months we would have a life changing decision to make. On the in between we would try to live it up as much as we can so even leaving the hospital we would do elevator dances and always have dance parties when we got home,” Mrs. Spagnolo said.
Even now the family will still go 3 months at a time for at least the next few years. Every three months, Jimmy will have to go for scans on his tumor. If they are clear for at least 2 years then it is unlikely that the tumor will ever grow again. The family feels a great sense of relief that Jimmy will no longer be treated with chemo, but only checked on.
“It’s a beautiful thing to watch how Jimmy celebrates each moment. When we watched him ring that bell we felt relief, we’ve made it through another year with joy, laughter, and the ability to overcome. It’s a big weight lifted off of us as parents to not have to worry about the chemo each month, but more importantly it’s knowing Jimmy will be free to grow and live his life without the side effects of a drug weighing on him,” Mrs. Spagnolo said.