We were blessed with a great support system, including a loving family, wonderful home health nursing care, and Cariana’s oncology team at UNM who were unfailingly kind and caring, even when I called them with crazy questions at all hours. But nothing they gave her worked for long. Each round of chemo would suppress her bone marrow for a while, but then the leukemic cells would come right back. She also lost weight (which scared me almost as much as the chemo did). Meanwhile she suffered painful bone marrow procedures and line insertions. She was amazingly tolerant of it all, but I was not. I cried in frustration and felt her pain every time she had to get poked.
In fact, we were so in tune with each other that when she started crying daily (a rare thing for this cheerful, loving little girl) I began to have stabbing headaches at the same time. I just knew I must be feeling what she was feeling. And it turned out to be true, because when she was readmitted to UNM once again, they discovered the leukemia had formed a mass in her brain that was causing her terrible pain. And off we went, Cariana sitting in her little red wagon, waving to her nurses on her way to the radiation treatments which we were hoping would shrink the tumor.
We were trying to get her into remission so she could get a bone marrow transplant, since the recommended chemo regimens had all been tried and had failed. If she had gone into remission, we wanted to go to Chicago for the transplant, where I had family who could help us. But her counts never got low enough for that to happen.
When it became clear that her treatment was not going to be successful, we wanted to take her home, but she was still in a lot of distress and required morphine for pain control. The adult hospices in Santa Fe, where we lived, were not comfortable providing hospice for a two-year-old. With no pediatric hospice available, we ended up spending the last two weeks of Cariana’s life in a hospital room, away from her two slightly older siblings (Placido and Liesl). This was one of my biggest regrets and disappointments because we didn’t get to be together as a family at the end of Cariana’s life.
After her death, I talked to the UNM oncology team and found out they had been thinking of starting a pediatric hospice. I jumped in and helped in any way I could, and after about a year of preparation, Mariposa Pediatric Hospice was born. While I am thrilled that Mariposa continues to this day, I know there is still a gap between what services are needed by children and families and what is being provided. Specifically, in-home palliative care services seem to be much needed, especially for those children who need community-based palliative care, respite care, and supports but are perhaps not at the end of life yet and do not qualify for hospice. After helping to launch Mariposa, I became Board certified in palliative care, and thought about working in hospice. But instead I used my pediatric and public health training to go to work at the Family Health Bureau in the NM Department of Health. The first program I worked with there was Children’s Medical Services, the state program for children with special healthcare needs, which seemed like a perfect fit.
When I heard about Hero’s Path and met Jen, I knew this was something I was meant to be involved in. It seems like a natural extension of everything else I have done since Cariana’s death. Everything I do is in some way an effort to honor her legacy. It’s as if I can hear her saying “Take the love you have for me and use it to help other children.” And so I try to do that, every day.