Demi was a happy 18-month-old little girl when she suddenly fell ill. After a doctor’s

appointment and two hospital visits, she was given a CT scan of the brain. Two doctors came in the room and told me there was a mass. It truly was one of worst days of my life. Demi was sent immediately to Children’s Hospital of Philadelphia and given an MRI scan to be certain that it was cancer. They thought it was Ependymoma, which is a very rare cancer of the brain and spine. Demi also had hydrocephalus due to the tumor blocking fluids from the brain. Demi underwent three brain surgeries in the next few days. 

Demi who was previously a pretty normal but slightly delayed 18-month-old was now somebody entirely different. She couldn’t lift her head at all initially or speak. She also was drooling, the left side of her body was now weak, and her face was paralyzed on the left side. Her left eye had major problems as well. We would soon find out Demi had what’s called Posterior Fossa Syndrome. This is a very rare syndrome that mimics autism. Demi’s left vocal cord was also paralyzed. I was forced to make a decision to do a tracheostomy to help aide her in the 33 rounds of radiation that were yet to come, as well as a g-tube in her stomach for feeding because she couldn’t eat. The doctors were certain that it was Stage 3 Anaplastic Ependymoma, which is the worst of its kind and unfortunately tends to reoccur often. 

After Demi recovered a bit from this surgery, we started radiation. Demi progressed to sitting and could now stand and walk with a lot of assistance. Demi finally rang her bell and was done with radiation after three months at CHOP. This took a major toll on her two youngest sisters, who were unable to see her, and on her oldest sister, who just turned 18 and who took care of them while this was happening. 

Demi was unable to go home yet so she went into Good Shepherd Rehabilitation Inpatient in Bethlehem where she spent 3 months learning to walk again, talk again, and finally to eat again. Demi has been home for 2 years now and finally has gotten her trach out and is eating more and more. Demi is a special girl. She can outrun a lot of kids her age. She is just getting better every day! When she got home, I found PCFLV, and they have been so wonderful to our family. Most people don’t realize how cancer truly affects the whole family. I thank God every day for CHOP, Good Shepherd, and PCFLV. Their help and support have been priceless.

Written by Demi’s mom, Diana

Please consider helping children with cancer and others in our community by scheduling a blood donation at Miller-Keystone Blood Center: https://donor.giveapint.org/donor/schedules/zip