Honored Kid

Rosie C.

Age 15
Rosie C. Kid Photo

Location

Palatine, IL, US

Diagnosis

Brain or spinal cord tumor

Date of Diagnosis

September 2007

Status

In treatment

Treated At

Ann & Robert H. Lurie Children's Hospital

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My Story

Twelve-year-old Rosie Colucci doesn’t sit around feeling sorry for herself she’s out in the world spreading awareness and raising money for all types of childhood cancer and Neurofibromatosis. Research has always been her main focus because she wants to help find and fund a cure, not only for Pediatric cancer but for Neurofibromatosis or NF too. She puts a lot of energy and heart into pediatric brain tumor awareness specifically because Rosie, a.k.a. Rock Star Rosie, has three inoperable brain tumors or brain cancer, a 4th thought to be another Glioma, and possibly even a 5th in the brain stem area. Options for treatment are running out not only for Rosie but for too many other kids; no one wants to be sent home on hospice to die.Rosie was recently named Chicagoland’s Kid of the Year 2015 and in 2014 she was named American Red Cross’ Youth Good Samaritan Hero. Rosie is known for her work in the community as a young philanthropist raising funds for her favorite charities and is an avid advocate for Neurofibromatosis (NF1), pediatric brain tumor research and childhood cancer awareness. If you’ve been in Chicago during August, you may have even caught her name up in lights atop the Novak Construction building off the I-90, The Kennedy. Or perhaps you have seen her HOPE sign with a big gold ribbon signifying Childhood cancer awareness in September on top the same building. She raised nearly $8,000 to have that sign go up. Rosie’s mission is to spread the word that pediatric cancer is way underfunded; she encourages everyone she meets to help fund a cure! Rosie knows all too well that brain tumors are the deadliest form of pediatric cancer; she has lost 15 of her friends to the devastating disease.Rosie restarted chemotherapy, a Phase II Clinical trial, for the fourth time in her life in October 2013 and continued taking in until late December 2015. Her first protocol started at the age of three. Rosie earned her nickname from her doctors and nurses because of her amazingly positive attitude and never-ending smile. Facing challenges and pain like a Rock Star, head on, facing her fears and doing what it take to get through treatment and other medical procedure; Rosie exudes a “bring it on” attitude. Her nurses would say “Rosie, you're such a Rock Star” and it just stuck!Rosie began going to Lurie Children’s Hospital (formerly Children’s Memorial Hospital) when she was just 10 months old due to a genetic disorder called Neurofibromatosis or NF; 50% of the time it’s passed down through families, 50% of the time it’s a mutation of the gene (affecting chromosome 17); the latter is true in Rosie’s case. NF causes tumor growth anywhere in or on the nerves of the body and in Rosie’s case, brain tumors are the direct results of her having NF. Unfortunately, Rosie has an extremely rare, one of a kind, case.Her brain tumors are inoperable. The main tumor is located deep in the center of the brain. Sadly, the main tumor has caused a multitude of other disorders and complications making it, in combination, one of the first known cases of it’s kind.She also has a second life-threatening condition called Acquired Obstructive Hydrocephalus, or fluid on the brain, where catheters are placed to act as an internal drain so fluid doesn’t build-up. She was also diagnosed with Central Precocious Puberty or early puberty at the age of 3; Rosie had an implant in her arm that was surgically taken out and replaced each year that released medication to hold off puberty until the time was right or she was the appropriate age for puberty. It was just removed for good in 2013.She also has Bilateral Optic Nerve Atrophy and Bilateral Optic Nerve Gliomas, both cause irreversible loss of sight. Because the main tumor sits in the third ventricle of the brain and pushes on the pituitary gland and hypothalamus, Rosie also had excessive growth hormone for about 6 years. This excessive growth hormone causes her to grow way too fast, at one point, at the rate of 11 inches a year, most kids on average grow 1-2 inches a year. This extremely rare condition is called Pituitary Gigantism. Not only did she get taller really fast, her organs were also growing too fast, causing issues with her heart, kidneys, spleen and more; not to mention the growing pains her little joints felt.Rosie has braved over 1,835 injections of hormone suppressant to slow her growth since her diagnosis, in the beginning, it was every 8 hours for over a year. She’s endured a total of 2,310 pokes, including her shots, IV’s, and blood draws. Rosie also had extreme Hypertension or high blood pressure (BP) for seven years; it's still monitored, but it is finally under control. At one point she was on five drugs just for high BP and a patch she had to wear 24/7, they were worried that if it couldn’t be controlled, she could have a heart attack or stroke out.Rosie has endured six different types of chemo drugs, 4 different protocols, 12 brain surgeries, 14 other surgeries and 230 tests, 405 clinic visits, 1,486 doses of chemo, 71 nights in the hospital, 33 emergency room visits, 11 ICU admissions, 186 therapy sessions (Physical therapy, speech therapy, occupational therapy, talk & play therapy) and so much more. Rosie sees a dozen different specialists at Lurie Children’s Hospital who take amazingly good care of her.Today, Rosie is still fighting. Currently her latest MRI from December 1st, 2016 shows a slow procession of disease or cancer in her brain. So for now, she waits and the doctors and her mom watch for sign of any changes within her brain, signs of any physical, cognitive, or vision changes. She will stay off of treatment until the tumor growth negatively affects her mental abilities, sight or motor skills. Another MRI is scheduled for April 2017. Rosie and her family remain hopeful. They believe in the power of prayer and in miracles!Rosie doesn’t let cancer or her other illnesses define who she is, she doesn’t allow herself to be down, in fact, she’s made it all about positive outcomes, spreading joy and giving back! She wants to be inspired by others and in turn inspire them right back!Rosie also started her own organization called Rosie’s Toy Box where she collects NEW blankets, toys, books and crafts for hospitalized kids. Her motto is...Spreading Sunshine, Joy, and HOPE one toy at a time! If you or your company would like to host a toy drive, please let her know, e-mail Rosie’s Mom at jomama0208@yahoo.com Thank you! Check Rosie out on Facebook: Rosie.Rose.52 

The Childhood Cancer Ripple Effect

Who's Honoring Me

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Children who are fighting or have fought cancer inspire others to be part of the Foundation's mission — to support the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

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