When Connor began to have behavioral changes, along with balance and coordination complications, eye changes and just being sick all the time, we knew there was something wrong. It took 4 months of doctor visits, eye doctor appointments, and behavioral psychology appointments with no answers at all as to what was happening to my Connor until I decided that enough was enough and we went to Children’s Healthcare of Atlanta for a second opinion. The morning before his visit to CHOA, Connor slept all day long , only waking up to throw up and go back to sleep. This is the day he began complaining of headaches.
Connor was immediately taken to Children’s Healthcare of Atlanta Scottish Rite via ambulance from a CHOA urgent care center after only 20 minutes of evaluation. Connor was taken back for a CT scan almost immediately after arriving to the hospital. I will never forget when doctors came back with the words that Connor had, “a mass on his brain and it is very large.” This is when our brain tumor journey began, October 19, 2016. Connor was diagnosed with a rare brain tumor called Juvenile Pilocytic Astrocytoma otherwise known as JPA. It was a cystic and solid posterior fossa tumor and he also had severe hydrocephalus due to the size of the tumor. The tumor was larger than a golf ball and was already beginning to push over Connor’s spine and growth was found within his optic and auditory nerves. Connor spent the next 7 days in the PICU, where he had to have an External Ventricular Drain (EVD) placed into the ventricles within his brain because they were four times larger than normal size. On October 26th, 2016, Connor underwent an 8 hour craniotomy and with an amazing team of neurosurgeons and nurses, they were able to remove the entire tumor from Connor’s brain. Connor spent the next 28 days within the comprehensive rehabilitation unit at Children’s Healthcare of Atlanta. 4 months later, Connor has tested out of speech therapy, but is still receiving occupational and physical therapy weekly. Connor recently had a postoperative MRI which showed the tumor was growing back into a different part of his cerebellum. We know that this journey will not be a sprint, but a marathon that we continue to train for each day. We are thankful for the Rally Kid Foundation for their constant love and support of not only my family but to all brain tumor and cancer families. Thank you for shining a light on the fight against childhood cancer!