Brain tumor just part of life for Rosie
Despite tumor, Chicago area girl has big dreams
Thursday, September 29, 2011
Rosie Colucci was 6 months old when her pediatrician told her mom the café au lait spots she had on her body could be neurofibromatosis, a genetic disorder that causes tumors to grow on nerves throughout the body.
By the time Rosie was 3, the NF diagnosis was definite. So was the inoperable tumor in her brain.
Since then the Palatine second-grader, who dreams of growing up to be a rock star, has undergone hundreds of medical treatments, including chemotherapy, 13 surgeries and too many middle-of-the-night trips to the emergency room.
Through it all, 7-year-old Rosie finds joy in every day.
"It's not that hard," Rosie says matter-of-factly. "You get used to going to the hospital all the time. … I don't cry when I get accessed. Every night I get poked. But when I go to the hospital it's 'Hi Rosie! Hi Rosie!'"
Her family draws strength from Rosie's strength.
"She has an incredible attitude. She'll say 'Mom, isn't it a beautiful day? Look at the sun'," says her mom, JoAnne Colucci. "For somebody who is 7 years old, it amazes me that she will stop and look at a flower or a dog and see the beauty in it."
Rosie has also worked to create that joy for others.
Rosie's Toy Box, her pet project, collects thousands of toys for patients at Children's Memorial Hospital.
She started the project by giving away her toys to other children in the hospital when she was 4, after noticing how many toys she had during a hospitalization compared to other kids who had none. Now she collects thousands of new toys every year for kids, like her, for whom the hospital has become a second home.
When she's not holding fundraisers and toy drives, Rosie's busy handing out her business card-her mom had 5,000 made-to anyone she meets in stores and restaurants. She also participates in other fundraisers-raising $3,000 in one day for one organization.
"She's raised tons of money with the help of so many. She does the Pediatric Brain Tumor Foundation's Ride for Kids and she also does stuff for the Children's Tumor Foundation, the NF clinic at Children's and also the brain tumor area," says JoAnne.
Perhaps the biggest motivation for Rosie's fundraising efforts is that she knows firsthand what it's like to be one of those sick kids. The necklaces she wears wrapped around her neck are a constant reminder.
Rosie has 12 necklaces filled with hundreds of colorful beads, each one an indication of a medical procedure she has undergone at Children's Memorial. When asked about them, Rosie holds up the strands of beads tucked underneath her wispy brown hair.
"These are my beads and these tell the story of my journey. All the yellow ones are nights in the hospital; all these white beads are chemos and I've had 142 doses of chemo. I've lost my hair twice," she recites in her sing-song, little girl voice. "And this bead here, the big one, that's worth a thousand shots. I have 13 stars and those mean surgeries, and lots of other beads."
Since age 3, Rosie has been fighting a myriad of complications that are a result of the brain tumor. The tumor pushes on her pituitary gland and hypothalamus, while also blocking spinal fluid from getting to her brain. Instead of shrinking the tumor, the initial chemo caused the mass to triple in size. Early on, Rosie had emergency surgeries to relieve pressure on her brain, while her dad, Mark, traveled back and forth from the hospital to care for their older daughter Bella, now 11.
As the treatments took their toll on her little body, 3-year-old Rosie would often ask if she was going to die. "I'm going to heaven tonight, Mom. I'm just gonna go visit my friends for a little bit and come back," she would tell her mom.
But one night JoAnne remembers being shaken to the core when Rosie told her, "Mom, I'm going to heaven tonight and I'm not coming back."
But Rosie has hung in there-through chemo, surgeries and innumerable trips to the hospital and doctor's office. She lost half her body weight and weighed only 24 pounds at age 3. Then she developed pituitary gigantism and started growing at a rate of 11 inches a year.
Five months ago, the doctors stopped Rosie's third attempt at chemotherapy because it elevated her already high blood pressure to dangerous levels. She takes dozens of medications every day to keep symptoms at bay and sees 15 different specialists to deal with the many health issues associated with neurofibromatosis and brain cancer.
Her family knows Rosie faces an uphill battle and they consider each day with Rosie a gift.
"We never know how long Rosie will be with us," JoAnne says. "She taught us to live the day the best you can. …She has this incredible spirit that you can't help but see."
Each year on Rosie's birthday, her family throws a big party to celebrate another year of life. This year, JoAnne realized that with the mounting medical expenses-more than $2 million so far, resulting in tens of thousands in deductibles and monthly medications-they just couldn't afford to give Rosie a party.
When fellow parishioners at Holy Family Parish in Inverness heard about the family's hardships, they decided to throw Rosie's party. Not only that, but they have created a fundraiser party to help raise money for the family.
On Oct. 1, the Rock Star Rosie Benefit will be held at the parish. For the first time, instead of Rosie raising funds for others, others will be helping Rosie.
Rosie's excited about the party. She loves to have her face painted and, as her mom will attest, she loves to talk and meet people. Plus there's always her rap to perform, one she wrote herself.
"I dream of being a rock star, and driving my own cool car," Rosie raps. "But I just want to be a chemo nurse, I don't think I could do much worse. Helping kids is what I do. I think you should help them too."
If you're looking for Rosie at the benefit, she'll be the one in the middle of the dance floor, bustin' a move with a glittery pink hat and 12 strands of beads of courage wrapped around her neck, dreaming of being a rock star.
Liz DeCarlo is senior editor at Chicago Parent. She is the mom of three.