Sweet and spunky little Evie Mae was two years old when her Momma, Taylor, felt a lump on Evie’s right side. Although Evie had no other symptoms, Taylor followed her mother’s intuition and decided to take Evie to the E.R. the next day to get some answers. Not knowing that would be the last “normal” day of their lives. Days not filled with fear, worry, pokes, scans, tubes, and sleepless nights.
The next afternoon the results from Evie’s blood work and CT scan showed that Evie had a tumor engulfing 80% of her liver. The doctors diagnosed her with Stage 4 Hepatoblastoma, a rare form of childhood liver cancer. The physicians informed us that operating to remove the tumor was not an option, as Evie would not have enough healthy liver left for proper functioning. Even with four rounds of chemotherapy, the doctors were not hopeful that the tumor would shrink enough to be able to remove it. A liver transplant was the only option. For Evie to be able to receive a liver for transplant, she had to first endure four rounds of intense chemotherapy.
Evie was such a fearless princess at heart, with a love for the outdoors. Playing dress up, house, painting our nails, reading and doing her favorite puzzles, were always our favorite. Her smile, so full of life, warmth, and tenderness. Her belly laugh could light up a room with smiles. Evie was such a fish; anything to do with water, she absolutely loved. Sprinklers, pools, lakes, etc. When I took her to see the ocean for the first time, I saw the connection she had with it: the calm and clarity that surrounded her with her feet in the ocean, I knew it always had a special place for her.
The weeks and months to follow, watching the chemo suck the light out of her eyes and the strength in her tiny body was unbearable. Yet, she took on each day with such strength, pride, and joy. She never let her experiences take her smile or her kindness. She was such an inspiration to thousands! She was ready to fight and fight she did! Her strength gave me strength. I am so proud of my little girl. Also, the team we had behind us was incomparable. Friends, family, and supporters came together to help in so many ways, from all over the country. We were so grateful and felt very lucky.
After four rounds of chemo, Evie would defy the odds for only the first time in her life. Her scans showed the tumor had shrunk TREMENDOUSLY. The doctors were shocked, to say the least. Hearing the words, “Your daughter does not have to have a liver transplant,” were such a weight lifted off my shoulders. How amazing! They set Evie for surgery in a few weeks to remove the rest of the tumor and two more rounds of chemo to follow as a precaution to destroy any cancer cells being left over. Evie continued to amaze us all as she recovered from the surgery as if it had been just a simple root canal, not having 40% of her liver removed! There were bad days and even weeks. But, we never lost hope. Evie finished her two more rounds of chemo, and unlike many other families we did get to hear the words every cancer parent prays for: NED, “No Evidence of Disease.” Evie’s recovery was going better than I could have ever imagined. Her blood counts weren’t exactly back to normal, but they assured us there was still time for that and not to worry. The next four months were for healing, enjoying, and trying to get back to a “normal” life as much as we could. Evie had no problem catching up with the other kids. Even with all she had been through. She even had a stronger little body than some other little ones her age. Intellectually, she was always so wise beyond her years. Many could never even tell what my little warrior had truly been through, just by looking at her. I laughed sometimes, when moms would think I really cut her hair into a very short pixie cut as her curls started to grow back after losing all her hair from the chemo. Evie started a new daycare she loved. I tried to work again. Leaving her again for the day was hard. You learn to appreciate every moment and every day with them. Evie was so ecstatic to even be able to start gymnastics. She was so strong, I loved watching her out there. We even were able to go to Disney World and see the ocean again. It is hard to not think each time you do things that it could be the last. One thing I will never regret is making every moment matter and the memories we made together.
The fear did return as her blood counts started to show possible disease again, but scans did not. It was so frustrating. The doctors telling us they thought it could possibly be back, but without seeing it, there was nothing they could do now; just wait it will show its ugly face again. That helpless feeling as a parent is something I wish upon no one. Days turned into weeks. Then, that day came. The doctors were right. Cancer did show its ugly face, and it was the scariest one of them all. A new tumor was found in the upper lobe of her liver that was inoperable. Evie would have to be placed on a liver transplant list. Thankfully, she was, and we were ready for that call at any moment of the day. As each day passed, we wished and hoped the next day would be “the day”.
Then, after five weeks of waiting, Evie turned jaundice. She was sent straight to her liver team in Omaha to run scans and to place a drain in the bile duct of her liver. Within hours, we were told that she had a new aggressive large tumor that had engulfed her liver and moved toward her spleen and small bowel. The surgeon told us the cancer had gotten too massive and close to other organs to do a transplant, so she would be taken off the transplant list and chemo should be started again to try and shrink it. He said, "My fear is it has spread to other organs and there will not be much we can do.” Needless, to say we were devastated!! Our family did a lot of crying and praying! Then, we got ready to FIGHT!!!! We took Evie back to our oncology hospital closer to home, where she underwent a CT of her lungs to make sure the cancer hadn’t moved there. We found out that it had not. Thank you Jesus!! We then prepared to start months of chemo and the fight for her life again.
That next day, as chemo was just twenty minutes from being hooked to her IV, I received a call that there was a donor match for Evie and that her best chance for survival was to transplant her liver, small bowel, pancreas and to remove her spleen. I was in shock!! How could this be!? Our prayers had been answered! Evie was defying the odds once again. We took Evie to Omaha to prepare for her life changing transplant.
On July 4, 2017, Evie underwent her triple organ transplant surgery. The surgery was about 8-9 grueling hours long. Evie was given the gift of life. Amid their grief, another family had made a very difficult decision that changed our lives! We will be forever grateful for their angel! Without that transplant, we were told afterwards, that Evie had just weeks, possibly days to live. This was Evie’s gift of freedom. Freedom of a life without cancer. This type of transplant had a very long difficult recovery road, but I had no doubt she would be able to overcome this new, hard journey and so did her medical team. Evie’s miracle touched many lives around the world even! She was already such an inspiration to all of us around her, but I was so glad to see so many others realize that and be able to give them inspiration in their own lives as well.
The next weeks and months to follow were the hardest ones yet, with many amazing steps forward as well as many setbacks. Each day was a new challenge for Evie to fight through. Making sure there were no organ rejections, fluid accumulation around her heart and lungs continuously coming back, her blood sugars up and down, trying to keep food down, were just the tip of the iceberg. Her fight to take on each challenge and then overcome it to the next one was something compared to Superhero power. We never lost hope.
Evie was set to start a new aggressive chemo regimen three weeks after transplant to kill any cancer that might have spread elsewhere or had been missed. It brought her downhill fast. Weeks later, the cancer spread to her brain, causing brain swelling and bleeding. Evie had to have an emergency brain surgery to stop the brain bleeding and swelling. They would try to remove the tumor if possible at the same time. She was up and walking the very next morning after brain surgery. I mean how amazing is she!? What couldn’t she conquer!? The news that the surgeons were hopeful they were able to remove all the tumor brought comfort. But my baby was still suffering so much. She proved her fight was still there and so were we! We were all ready to keep fighting with her!
Only a week later did we learn that Evie had three new tumors growing in her brain. I was given the words I never wanted to hear: “There is nothing we can do for her.” Our hearts were broken. After three long hard months in the hospital faraway from home, we planned Evie’s Make-a-Wish trip and enjoyed every moment with her as we took her home. Evie was so strong at home for the next few weeks, even surprising the doctors by walking up and down the stairs by herself and more. Her Make-a-Wish trip to Disney World was a dream come true. Evie had the sparkle back in her eyes. She was so happy. We all were so happy. She even got to see the ocean and play in the sand.
Just five days after having her cute toes in the sandy water, my sweet baby girl gained her angel wings on her 4th birthday. She is my guardian angel now. She inspired so many with her heart, strength, and kindness. Keeping her voice alive and spreading hope to other families is a passion we plan on keeping forever! Thank you all for your prayers, love, and support!
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