A.A. was born at 29 weeks of gestation with autosomal recessive polycystic kidney disease. At one month of age, she had surgery to remove one of her little kidneys. At three months of age, she had a second surgery to remove her remaining kidney.
Her mom, Angélica, recounts the story. “She didn’t have kidneys for a year. She needed peritoneal dialysis every day, which I would do at our home — with the help of our Care Options for Kids nurses, Maritza and Janet.”
While the situation was critical, it eventually became the family’s new normal. “My parents, the nurses, and I became a really good team. We did everything that needed to get done to take care of A.A.” Then, when the baby was a year and a half old, her nurse Maritza noticed something unusual.
“Maritza was feeding her through her g-tube, and noticed there was a small amount of blood on the tube,” Angélica explains. “I thought that was normal, but Maritza told me that it wasn’t, and to go to the hospital immediately.” At this point in her story, Angélica breaks down to cry. “It turned out to be liver cancer. She was diagnosed with hepatoblastoma, stage 3.” She takes a moment to compose herself. “Maritza is our angel. She was brought into our lives for a reason. She saved my daughter’s life.”
Martiza joins in, as she tells the story from her perspective. “A.A. spent the first seven to eight months of her life in the hospital. I started working with her as soon as she came home. When I first arrived, I never expected the case would become so complex, but it has. However, we all work so well together. We all know instinctively what A.A. needs, and we do everything to provide it for her. And honestly, I don’t even see her as a patient. To me, she’s like a granddaughter.”
Maritza explains how they each take turns helping to care for A.A., including times to go to the cancer clinic for chemotherapy sessions. She also marvels at how A.A. started responding well to chemo, so she was placed on a transplant waiting list — and got new kidneys and a liver in December 2019. “Her getting her surgery was such a huge blessing. I had told her mom that would be her Christmas miracle.”
Angélica also explains how this team effort has allowed her to also take care of herself. “Knowing that the nurses are here around the clock allows me to go to sleep at night, knowing that they are here to care for my baby.”
A.A.’s grandfather, Jorge, joins in. “My granddaughter is two years old now. In the past two years, a lot has changed for us as a family — and it has changed for the better. She was born with so many health challenges, which made us all adapt. But, when she was diagnosed with cancer, our whole world — challenging as it already was — fell apart. Thankfully, Care Options for Kids has been so responsive. The nurses took it upon themselves to visit us at the hospital and to be in constant contact with the family, not just at a professional level, but on a human level. They really feel like they are part of the family.”
Despite all the hardships, Jorge explains that things are looking up and that they now find inspiration from A.A. “All throughout, A.A. has been a blessing to us. I speak for the whole family. As little as she is, she has battled and has been an exemplary warrior. She overcomes everything — even when it’s against all odds. She has overcome. That has given us additional strength and inspiration to be better people.”
A.A.’s health has been improving significantly since she got her transplants — and her upcoming chemotherapy may be the last one she needs. “She’s almost out of the woods now,” Angélica sighs with relief. Her grandfather understands very well. “We see her as a role model for us to overcome and tackle any challenges that come our way.”