Twelve-year-old Summer Chylewski loves singers Khalid and Bazzi, and likes to dance, sing and tell jokes. Since she was age 6, a lot of those activities have taken place at Lurie Children’s. There, Summer has been treated by numerous specialists for a genetic disease that has resulted in a benign brain tumor that has almost completely robbed her of her vision in both eyes, and affected her ability to walk and speak clearly.
“Despite everything she’s been through, Summer is a happy-go-lucky, high-spirited kid,” says her mom, Nicole. “She doesn’t mind coming to Lurie Children’s for the numerous chemotherapy treatments, MRI scans and hospital stays she’s needed. I think that has a lot to do with her doctors and nurses. Everyone has been wonderful and has given her so much love and support.”
Summer’s brain tumor is a result of Neurofibromatosis 1 (NF1), a disorder that can cause small benign growths on or under the skin. It can also result in heart issues, learning challenges, softening of the bones and curvature of the spine. In Summer’s case, she developed an optic nerve glioma, a tumor in the cells surrounding the nerve that controls vision. Even though her tumor is not malignant, her treatment plan has required chemotherapy to try to shrink the tumor. She has also been treated for hydrocephalus, and needed a shunt inserted to drain excess fluid from her brain. Summer has also undergone several surgeries caused by shunt malfunctions.
Currently, she is about to resume her fifth form of chemo. Some chemo treatments have caused dangerously low blood cell counts. Others needed to be discontinued because she was unable to tolerate their side effects.
“It’s hard, because every time you think, ‘What are we going to do if this one doesn’t work?’” says Nicole.
Currently, Summer undergoes weekly physical, occupational and speech therapy. And, despite missing as many as 120 days of school last year, she’s on par academically with her 6thgrade classmates.
After spending so much time in Lurie Children’s Cancer Center, Summer and her mom have gotten to know a number of other patients with brain tumors and their families.
“I advise parents who are just beginning this journey to take advantage of all the resources and support the hospital has to offer,” says Nicole. “And don’t be afraid to go up to that family in the infusion center playroom and introduce yourself. It helps to know that you’re not the only family going through this.”
Nicole is thankful for family, friends and others who support brain tumor research, including the many studies taking place at the Stanley Manne Children’s Research Institute at Lurie Children’s.
“We have become close with a number of families both at the hospital and through social media who ultimately lost their children to brain tumors,” she says. “You get so attached to these families, and share in their pain.”
Nicole says she looks forward to the day when Summer will be off chemo for good, and won’t need regular visits to the hospital for MRI scans and blood draws.
“I just want Summer to continue to reach for the sky and be the best person she can be,” she says.