Despite cancer diagnosis, local girl shows resilience, gives back
By Paul Palmer
SIMSBURY – Marisa Caponetti was like a lot of 13-year-olds in the fall of 2021. She was settling into life as an 8th grader at Henry James Middle School in Simsbury, enjoying school, her friends, drawing and, of course, lacrosse.
When her right shoulder started bothering her, her parents had it checked out. The diagnosis, after an X-Ray, was tendinitis and the prescription was rest. Things didn’t get better when Marisa started playing lacrosse again, so a second visit produced the same diagnosis and physical therapy. On Jan. 31, 2022 Marissa’s shoulder had swollen and was painful to the touch. The next day she was taken for another X-Ray and everything changed for Marisa, her father Gary, mother Francesca, sister Ava, brother Nicholas, their friends and community.
“Gary was with her. We thought maybe she just popped her shoulder out,” her mother said. “We were not expecting cancer at all.”
But this time there was what looked to be a mass in her shoulder. “We had no time to process it. A friend drove me to them at the doctor’s office and they were already lining up an oncologist and surgeon.”
Over the next few days, working with Dr. Michael Isakof and Dr. Adam Lindsay at Connecticut Children’s Medical Center both of whom are from Simsbury, the family would learn more. An MRI indicated it was most likely bone cancer. A biopsy would confirm that it was Osteosarcoma – a rare cancer of the bone.
The cancer was in her right shoulder and it had been caught at Stage II. The treatment would be long and hard. The psychological effects could be tremendous on a 13-year-old, but no this one.
“What she’s going through – lots of folks complain about small things – she has not complained at all,” her father Gary said.
Marisa was immediately put on chemotherapy before undergoing surgery to remove the growth plate in her right humorous and replace it with a cadaver bone. She is on a 9-month chemotherapy regimen: Three weeks a month at CCMC and that will run until February. After the diagnosis and first round of treatment the family was heading home when Marisa came up with an idea.
“We left the hospital,” remembers her father, “and she says I want to put some baskets together for the other kids there.” They collected materials for 40 baskets and Marisa has been making and filling and delivering them while she is being treated. “She said to us, you raised me to be a good Christian and if I can do something I’m gonna do it,” said her mother. But that was just the start of the selflessness this 13-year-old who is wise beyond her years would display.
“I’m not focused on the bad,” Marisa said. “You might be sick of getting chemo. Chemo is really harsh. You gotta look for all the good.”
In this case, that good is coming in the form of a huge effort by the family to fund research for other children diagnosed with cancer. They had a discussion as to how they could help, and asked Marisa’s doctors what they really needed.
“They said they would need $100,000 do be able to do any research studies. We said we’ll do that,” said Gary. “We realized to make a difference in other lives we need big money. That was the birth of a movement known as ‘#CapoStrong.’”
Marisa’s former elementary school – Squadron Line – and its PTO offered up the chance for people to show their support by purchasing a flock of pink flamingos to go in their yards. Donations large and small started pouring into the fund and in its first 5 weeks, it had surpassed the $65,000 mark. An amazing number for her family, but just part of the outpouring of love and support they have received.
“I don’t think we’ve cooked a meal since February,” Gary said. “We actually have had to tell folks on some nights to hold off because we want to cook.”
“When everyone is doing even little things, it makes me feel very loved and they can help me do things like raise $100,000.. and that’s a good thing,” Marisa said of the support. She says her friends have taken the attitude of ‘it’s not going to change how they talk or deal with me.’
“I told them to ask me any questions that they have.”
For her father Gary, seeing his daughter’s spirit has reinforced something he knew already knew about Marisa. “I was wondering what it would take for her to break. She’s not even close to breaking.”
Last summer, Marisa decided she wanted to play softball, a sport she had never played. She practiced and joined the Simsbury Softball and played for the season. One of her neighbors, Andy Curtiss, is the Vice President of Simsbury Little League Softball and has seen Marisa and her siblings growing up and he decided that there was something they could do to help.
Each year the Simsbury Little League Softball hosts ‘Softball night in Simsbury.’ Normally it’s held at the start of the season, the players and coaches from each team are introduced and a special guest throws out the first pitch of the season. But this year, Curtiss decided to incorporate support for #CapoStrong into the event, moving to the end of the season and having Marisa throw out the first pitch to her sister Ava.
“I wanted to do something besides announcing players and coaches,” said Curtiss. So Curtiss worked with the Baseball and Softball League sponsors and officials and presented a check for nearly $2,000 to the fund. “Watching her grow up makes it all the more special.”
Marisa’s form of cancer is responsive to chemotherapy and has a high survival rate. For now the family will continue with their routine, and Marisa will continue her treatments. She has been forced to stop attending school in person, but is home schooling. She has taught herself to draw with her left hand and says she’s just going to have to learn how to play lacrosse with the left hand.
“If I sit down and think it is a spiral of bad things that could happen,” said the 13-year-old. “I hope for things and work towards them and helping others is a good thing.”
Gary and Francesca exude pride when they talk about Marisa and how she is handling things. After coming home from her first round of chemo, they had bought wigs for Marisa to wear as she lost her hair. Instead, Marisa shaved off what was left of her hair and told her parents she was taking the dog for a walk through the neighborhood.
“She is being herself,” said her mother. “She’s doing exactly what she’s always done and I am proud of her for being true to herself.”
That pride extends throughout her entire family. Her younger sister Ava describes Marisa as” my brave, big sister.”
Anyone wishing to donate to #CapoStrong or learn more about Marisa or Osteosarcoma can visit https://give.connecticutchildrens.org/fundraiser/3881427.