Wylie’s Story

Everyone has some date they will always remember as it changed their life. Everything is measured as before or after. September 6th, 2019, is that date for us. Wylie had just been to her 6-month checkup. Her pediatrician felt that she should be checked by a neurologist as her head circumference was a bit large. The appointment was made and off we went. Until this point, she didn’t have any symptoms that the average parent would notice. She was overall a very happy infant. There had been a couple of times that she would get sick and she hated tummy time. We never thought anything was wrong. When we made it to the appointment, she started to show some signs of neurological distress. The doctor wanted us to go to the ER as it was a Friday and Wylie needed an urgent MRI. I remember hearing the techs discuss her tumor as I sat across the room while she was getting her MRI. It didn’t hit me as I thought it had to be someone else they were talking about. It wasn’t long before we were back in the ER. It was pretty busy but I could hear some more discussion outside our room. Again, it had to be someone else. Those voices came into our room though and told us the news. Our child who had just come into this world had cancer.

Things progressed in a hurry after that. Wylie needed surgery as she also had severe hydrocephalus. She was deteriorating fast. I cried as she went to the OR as I didn’t know if our daughter was coming back. Wylie would undergo several more scans and a biopsy over the next few days. We initially were told that she may have an atypical teratoid rhabdoid tumor (ATRT). We were also facing the possibility of metastasis as the latest MRI showed spots on her dura mater and spine. The prognosis was grim. The next week’s goal was primarily to get her home. If it was going to be the end, we wanted her comfortable and not in a hospital. We met some remarkable caregivers over this time and were told that Wylie’s biopsy and scans would be sent to St Jude in Memphis, TN. We weren’t expecting much and at the time we didn’t think much of having Wylie joining participate in a study.

Not long after Wylie was discharged from the hospital, we received a call from one of the neuro-oncologists at St Jude. We had a definitive diagnosis. Wylie has Medulloblastoma with enhanced nodularity. In particular, she has the Sonic the Hedge Hog type. This changed the prognosis considerably. We now had hope. They wanted us to start chemotherapy as soon as possible. We made the drive to Memphis a few days later, and Wylie started her fight. Wylie would undergo ten rounds of chemotherapy as well as several surgeries including a resection of the tumor after her fourth cycle. After her first chemo treatment, the majority of her treatments would be in Charlotte. We went to Memphis every two cycles for her scans. There were several hiccups along the way. Wylie stayed sick when her counts would dip low. She had a few infections. Her port had to be replaced. Each chemotherapy could cause a number of side effects. Then COVID came. This compounded her treatment exponentially in the beginning. It was hurdle after hurdle, but then the last cycle came and went in the fall of 2020. We thought the hard part was over.

In January of 2021, Wylie had her post-treatment scan. Another tumor appeared. It was the same cancer, but this time Wylie would undergo intrathecal treatment after another resection. We stayed in Memphis so she could get all her treatment at St Jude. She underwent five chemotherapy cycles before her body was telling us it was too much. It was taking almost two months for her to recover and she again had numerous fevers, transfusions, and infections. We were hopeful yet again as her scans looked great. In January 2022, Wylie had another follow-up MRI. The tumor had grown back. At this point, Wylie was almost three years old so she could undergo radiotherapy so again we stayed in Memphis so Wylie could get the proton therapy. Wylie underwent 30 rounds with a total of 36 Gy. Wylie underwent her last MRI on August 29th, 2022. The remaining tumor was stable, showing no growth. This has been the first post-therapy scan she has received with good news.

Wylie has now had three post-treatment scans. All have been stable with no growth or new findings. She is currently undergoing physical and speech therapies once a week to help her walk and learn to speak. She now has a robust immune system as well so we have all been able to get out of the house quite a bit more. She’s becoming an active toddler. With her particular cancer, we have been told that if she can make it a year after radiotherapy, then the odds of survival drastically increase.

Through all of this, Wylie has been the most amazing child to us. Even when she has been miserable, sick, and barely holding on, she showed us love. That love that she had for not only us but for everyone that has come into her life is what has inspired us to help others who are facing the challenges we have faced. No matter how hard it may get, we want others to feel they are never alone in this fight.