Patients in the Spotlight: Craig Winter

"Craig's Cookie Monsters" Helps Stroll for Strong Kids Grow

With the support of our patients and families - and the larger Rochester community - we planted the seed for UR Medicine’s new Golisano Children’s Hospital and it will continue to grow in many ways when it opens in just a few short weeks! Thousands of people impacted by the hospital will gather together to celebrate its future at the 19th annual Stroll for Strong Kids Walk and 5K Run Saturday, May 30, at Genesee Valley Park.

One of the dozens of teams ready to fill the park for the Growing Strong-themed event is “Craig’s Cookie Monsters.” Close to 95 people wear Cookie Monster-blue shirts in honor of their team mascot, Craig Winter. Described by his mom Kim as a “chocolate chip cookie fanatic,” Craig was diagnosed at the age of 2 with low grade glioma, a slow spreading cancer, typically originating in the brain.

Craig had been experiencing severe migraine-inducing headaches after lying down, causing him to vomit and become increasingly lethargic. After an MRI revealed swelling of the ventricles in his brain, known as water on the brain, Craig was scheduled for surgery to remove a cyst doctors believed was causing the fluid to back up. During surgery, pediatric neurosurgeon Howard Silberstein, M.D., noticed a patch of abnormal cells. Unsure of what they were, he knew they should remain cautious and continue to watch them. After surgery, Craig was in the Pediatric Intensive Care Unit (PICU) for six days and then went home. “We believed he was recovering and slowly returning to himself,” Kim said. “Two weeks following, Craig again woke up with a terrible headache and we rushed him back to the children’s hospital where further testing revealed he had several tumors through this spine, something very rare in a toddler.”

The Winters then met with David Korones, M.D., pediatric oncologist, to discuss the next steps in Craig’s care. Craig stayed in the PICU another 11 days and underwent three additional surgeries to insert a shunt in his head, redirecting the fluid from his brain to his abdomen and relieving built up pressure. He had a biopsy of the tumor in his spine and a port inserted in his chest to start chemotherapy treatment. Craig began chemo immediately and was initially put on a 60-week treatment plan.

Three months into treatment, Craig had an allergic reaction to his chemo and his medical team had to change his treatment plan, fearing his body would go into shock if he continued. In December of 2013, one month shy of ending the second treatment, an MRI revealed after months of stable scans that Craig's cancer was spreading to his brain.

“It was devastating news,” Kim said.

After consulting with several other doctors, Korones came up with a new 48-week treatment plan. One year later, Craig completed treatment on December 4, 2014. Craig has had follow up MRIs every three months and things have remained largely stable. “The care Dr. Korones and the oncology team have provided Craig and our family has given us hope and so much comfort during an unimaginable time,” Kim said. “We consider them all a part of our family and have the utmost respect for what they do.” 

The Winters first heard about the Stroll from other families spending time at the Pediatric Outpatient Treatment Center. Their gratitude to the hospital and its doctors for saving Craig’s life motivated them to create “Craig’s Cookie Monsters” back in 2013. Their team has more than doubled in size. Every year the team captains make oversized chocolate chip cookies for each team member, a special treat that fuels their participants for the fun day ahead.

This year, the Cookie Monsters won’t just be running and/or walking in support of Craig. Craig’s second baby sister Lauren, born via emergency c- section in Oct. 2014, will also be honored for her time in the hospital’s Neonatal Intensive Care Unit (NICU). Born weighing 2 pounds, 9 ounces, Lauren spent five weeks in the NICU. Now 6 months old, she weighs over 13 pounds and is thriving.

“Two out of our three children have been impacted by the children’s hospital,” Kim said. “Having the children’s hospital right here in Rochester has allowed us to stay close to our family through our experiences, which has been so important.”

During the time Craig has been a patient at the children’s hospital, he and his family have watched the new building transform from a pile of dirt into the significant structure it is today. “At some points we were coming in once or twice a week and we’d always make it a point to stop and watch the construction,” Kim said. Thanks to a donation made by his grandma, Craig’s name will forever be displayed on a leaf in Grace’s Garden, a healing garden on the east-side of the new hospital.

Although it’s not something they ever imagined their children having to use, the Winters look forward to all that the new Golisano Children’s Hospital has to offer and to being a part of its success by participating in the Stroll.

“We are so appreciative of the Winters family and Craig’s Cookie Monsters,” said Stephanie Sheets, assistant director of community fundraising. “As they rally around Craig and Lauren they are also supporting their doctors, nurses, and other faculty and staff at Golisano Children’s Hospital. All of the Stroll participants and teams make it a truly amazing event that brings families together for such a great purpose.”