We consider Everly to be a true miracle. Our Tiny Warrior’s story began with a 39-week ultrasound.
She is our first child and had experienced a healthy pregnancy, but my OBGYN was going out of town for a conference around the time Everly was due. She decided to do an extra, non-standard ultrasound, so we could decide together if we wanted to plan an induction if Everly did not come naturally before she left. My husband, Garrett, and I went from laughing in the waiting room to an ultrasound tech who went white in the face when she looked at the sonogram image.
Sometime between July 5th (our last sonogram) and July 24th, the day Everly was born via emergency c-section, a mass had grown in Everly’s brain that was the size of a small plum and it was hemorrhaging. Life sped up very quickly and Everly was immediately separated from me from the moment she was born. She and Garrett were transferred via ambulance to Dell Children’s Hospital and her first meal was donated breast milk while I began pumping in an attempt to help her in some way while we were apart.
On July 27th, on her 3rd day of life, Everly’s angel neurosurgeon, Dr. Timothy George, performed open brain surgery on our 6lb 8oz baby girl to remove the mass in her brain and stop the bleeding. He met us with tears in his eyes when he shared that, while the surgery had been successful and he was able to remove the mass in its entirety, what he found was not good. He knew it was cancer, and if there was such a thing as a good kind of cancer, he knew it was not that. A sample of the tumor was sent out for pathology and after a grueling wait, Everly’s official diagnosis came back a few weeks later as stage IV Glioblastoma, or high-grade brain cancer.
We were met with heartbreak after heartbreak as every conversation with every doctor was worst case scenario news. Several well-regarded doctors told us that Everly’s chance of survival was low. The first time we met our Austin oncologist, she brought in a palliative care team. We refused to accept this as her fate and our fight for her life began. We were driving home from Houston, after another grim appointment, when we got the call from St. Jude Children’s hospital that we were accepted- they believed in and had HOPE for Everly’s future.
She began a treatment plan in which she would receive 6 months of aggressive chemotherapy beginning at only 1 month old. We commuted to Memphis once a month for chemo, then came back to Austin for blood transfusions and check-in visits in between so we could work and have family support.
I tried to breastfeed Everly, but it was incredibly difficult, especially when her strength lessened as a result of chemotherapy. It became increasingly important that we also be able to calculate exactly how much she was eating during any given meal in order to track her input/output and to monitor her nutrition. In the midst of all this, she developed an allergy condition called FPIES. When you are FPIES to a food, it means that you are allergic to the protein in the food and your stomach cannot process it, which leads to extreme vomiting and diarrhea. Not ideal for someone going through chemo and made us even more dependent on breast milk.
I continued to do my best to pump, but my supply struggled to keep up with the consistent but scattered doctor appointments and hospital stays, juggling going back to work and with the stress we were under while Everly fought for her life. Her doctors made it clear that the best thing we could do for Everly’s nutrition and immune system was provide her with breast milk.
This is where Melissa Fuentes and Mothers’ Milk Bank Austin became a part of our team of heros. When we said our prayers at night during chemo, we would always thank the mamas who donated their milk and will be forever grateful that it helped get us through such an uncertain time.
We leaned on the milk bank and the generous milk donors to help us keep Everly alive and healthy while she fought cancer and we are so proud to report that she is doing well and just celebrated her first birthday!
-Recipient Mom Kelsey
