Childhood Cancer Warrior: Everly
Our beautiful Everly was born on July 24, 2019 via emergency c-section. At 11am that morning, we were laughing in the waiting room ahead of our sonogram and by 7:00pm that night our doctor and hospital had changed and our world was turned upside down. Our doctor was going out of town and scheduled a non-typical, late stage sonogram before leaving so we could come up with an updated birth plan. Sometime between our last appointment on July 5th and this one on July 24th, a tumor had grown in our unborn baby’s left temporal lobe, was hemorrhaging and the size of a plum. Everly was taken away to a local Children’s Hospital shortly after birth, seperated from Kelsey (mom). Our tiny, 7lb 8oz Everly was taken into brain surgery on July 27, 2019 at only 3 days old. We were more than terrified watching her tiny body roll away from us in an incubator and prayed it would not be the last time we saw her alive.
After what was a successful tumor removal surgery, her amazing neurosurgeon, Dr. Tim George, came to us with tears in his eyes. While he had been able to remove the tumor entirely, he knew what he found inside was very bad. A few days later, pathology revealed that Everly had stage IV glioblastoma- an aggressive and high grade form of brain cancer. We were introduced to the oncology team who immediately introduced us to palliative care. We were told that her cancer would 100% come back and to enjoy the time we had left with her. We were given a 10% chance for her to see her first birthday.
We began desperately searching for second opinions and for the foremost expert in the world on children’s Glioblastoma. We went to several renowned hospitals where we received the same grim news. We were driving home from one of these hospitals, devastated, when we got a call at 9:30pm on a Thursday night from Dr. Amar Gajjar at St. Jude Children’s Research Hospital. He told us to come to Memphis… he was going to help us save our daughter.
St. Jude provided us HOPE in an otherwise unimaginable situation. Dr. Gajjar was the first and only oncologist to speak about Everly in the FUTURE tense. We immediately knew we were all in and that we would trust St. Jude with our whole hearts. Everly joined a St. Jude trial for Infantile Glioblastoma and began an aggressive six month chemotherapy regimen which she began at one month old. St. Jude provided housing, reimbursed us for travel and meals, provided medicine/any therapies she needed and the love/hope/care/the amazing gift of our daughter’s life and future. We never received a medical bill. St. Jude exemplifies the epitome of healthcare and focuses only on what is the best, most modern, least intrusive treatment for your child to give them the best possible outcome in life, without the worry of if insurance will cover it.
Everly’s tenacity, strength and determined spirit were present from the start. We were told she would miss physical and cognitive milestones but she never did. In fact, she is missing a good majority of her left temporal lobe brain and was testing in the 99th percentile for memory and cognition compared to normal peers. She smiled and laughed the entire way through treatment, despite what was happening to her little body. Everly taught us so much about staying in the present and the joy in the little moments.
Everly has since started Kindergarten and has recently become the world’s proudest big sister to her little sister, Lilah. She is thriving, energetic, witty, kind, hilarious and a friend to all. She is the most outgoing person we’ve ever met and exudes joy, spunk and confidence. Despite blindness on her right side as a result of her tumor, she courageously tries new things. We’re currently in soccer and tumbling. She has a big imagination and is a big fan of theme parks, her cousins and of course dessert. We are proud to share that she has recently surpassed a major brain cancer milestone, 5 years NED (no evidence of disease) and we have now moved to annual MRI check-ins at St. Jude. The trial Everly was a part of and has been published, leading to better outcomes for other children diagnosed with infantile glioblastoma, many of whom no longer need chemotherapy due to targeted treatments they’ve discovered.
We’re so grateful that Sky High supports St. Jude and families like ours to spread hope and bring awareness to childhood cancer! All of these precious lives matter. We can’t wait to see how Everly impacts the world!
