The Sanchez family decided to relocate to Phoenix, AZ from Philadelphia, PA in 2014 to enjoy the west coast’s warmer weather. At the time, Kate and her husband, Daniel, had two children, Bernadette, three, and Adelaide, five, who made this exciting cross country journey with their parents.
Bernadette, or Bee as her parents call her, was a healthy baby, and was reaching all of her milestones. In the midst of unpacking, and with a house full of boxes, Kate was alarmed when Bernadette picked up a packing peanut and ate it. Because of the scare, Kate took her to the emergency room to ensure that everything was okay. The results were not what the family was expecting. Doctors discovered a cancerous, solid tumor that was growing in Bernadette’s stomach. She was diagnosed with Neoroblastoma, and went through four rounds of chemotherapy. The family was told that this type of tumor was typically inoperable, but that there was a specialist on the east coast who may be able to help.
“We left Phoenix and went to New York. Her tumor resection went well, but afterword, she had massive complications due to clotting that resulted in multiple bowel resections, a total pancreaectomy, splenectomy, a whipple procedure, and, ultimately, short gut syndrome.” said Kate. “Since her gut was unable to digest food, she was put on IV nutrition (TPN). As a result, she developed TPN related liver failure. We lived minute to minute and day to day.”
Three months later, the Sanchez family returned to Phoenix. Bernadette was on “gut rest,” which is why she needed to have IV nutrition. In Phoenix, she was in and out of the hospital with fevers, and it was challenging for her weakened digestive system to handle her environment. Kate said, “We heard about an amazing intestinal rehab in Philadelphia, so we went. The rehab was difficult because Bee couldn’t handle eating food.”
After determining that Bernadette needed a transplant, she was listed for a stomach, liver, small bowel and pancreas. After months of waiting, her health was deteriorating. “It was so difficult. The spark in her eyes started to leave – and then she had a seizure, which caused her to be unresponsive for three weeks.” Kate said. In June, 2016, Bernadette’s wait finally came to an end after a family selflessly said ‘yes’ to organ donation. “I held Bernadette in my arms as she fell asleep from the anesthesia before her transplant. The medical team allowed me to dress and go into the operating room with her, hoping that she would feel calm and loved before her transplant. She smiled at me right before she went to sleep.” Kate said.
Her transplant was a success, and her next challenge was to complete speech therapy and to learn to eat again. Kate said, “Doctors told us she was a poster child for transplantation. Post-transplant, her skin was less yellow, and in two days she didn’t need insulin anymore. It was amazing to know that everything was working.”
Nearly a year post-transplant, Bernadette is doing great. Before her transplant, she only said about five words. Now, she uses nearly 500 words and is thriving. She was accepted into a pre-school for the fall, and is making significant strides to reach the milestones for her age group. “She’s very spunky. She knows what she wants and has been stubborn throughout this journey. Her nickname with everyone is ‘The Bull.’ She also loves to help with everything, and to sing, dance and play with her siblings.” said Kate. Bernadette is now a big sister to her brother, Lucas, who is one.
Her second chance at life would not have been possible without the generosity of Bernadette’s donor family. “It’s so selfless to make that decision, and I’m really grateful to them. I would love to personally thank them some day.” she said.
The Sanchez family, along with their family and friends, celebrate Bernadette’s health at the annual Donor Dash as “Team Hive Five for Bee.” The Dash is a great opportunity for Dashers to honor donors and donor families, to celebrate the lives of recipients and to raise awareness about the more than 5,300 men, women and children in Gift of Life’s region (the eastern half of PA, southern NJ and DE) who are awaiting a life-saving organ transplant.
In addition to supporting the Dash, the Sanchez family is paying their donor family’s kindness forward. They formed an organization called Beds by Bee that provides children who are in the hospital with colorful bed sheets and blankets. “Hospitals are sterile. We saw how happy Bee was to have her character sheets, toys and books. We want to help other children feel more at home, to help them heal and to make the hospital less scary. It really can make a difference.” Kate said.