Bringing Hogwarts to the Oncology Unit

My daughter Iris had the terrible misfortune of being diagnosed with alveolar rhabdomyosarcoma just after her 13th birthday. Her diagnosis did not go smoothly, and when we were discharged 22 days later with more questions than answers, we transferred to a sarcoma center out of state. After her 54-week protocol, we were advised to participate in a clinical trial for a haploidentical stem cell transplant. It went horribly wrong, and she ended up on life support barely a month later. We lived in the pediatric intensive care unit for three months, then spent nearly three more on the oncology floor.

When it was apparent that my daughter was not improving, I knew it was time to get her home. I contacted an oncologist at UVA Medical Center, whom we had interacted with during a neutropenic fever on one of those rare occasions when we were able to be at home. The team accepted us, and we made the three-and-a-half-hour trek home. Iris came with lots of tough issues relating to the heart failure, advanced kidney disease and the many lingering side effects from a two-page complication list we handed off. Shortly after returning home, we discovered that she was relapsing just six months after the transplant. Despite her dire circumstances, the nursing staff and oncology team at UVA treated her like a rock star. I have never met so many dedicated professionals.

Because her body was so broken, there was no treatment option left. The cancer began as a tiny lung metastasis and possibly a lymph node. The second month it had spread to her abdomen, the third to her sternum. My heart was so heavy, and we were back to living in the hospital.

My goal was always to create as much normalcy for Iris as I could. I started reading to her early in the transplantation process, and continued to do so. We had run through all of the new young adult books and so went back to her favorite series: Harry Potter. We were in the last book. This is when Jackie first walked into our lives. She had a beautiful British accent and was a Harry Potter fan. She and my daughter immediately connected. In the last few weeks of my daughter’s life, she transported us into the world of Harry Potter. We were concocting spells to obliviate those darn tumors. When Jackie walked through the door, it was as though Professor McGonagall and Hermione were just sitting down to tea.

There were so many ways that Iris’s spirit was violated as a young girl going through puberty. Jackie would sail through it all as though nothing was out of the ordinary. Iris was just a girl having a lovely chat with someone who made her feel special, and normal, and deserving of a private chat with a kindred spirit. It was beautiful to watch. We rang in Christmas with Jackie, and those last few weeks she was a bright shining star to us. For just a few sparkling moments, we were transported to Hogwarts Castle. The only thing that mattered was to pine for butter beer and to cast a spell.

The most extraordinary part for me is that Jackie handled five patients at a time. Never once did she skimp on a moment of care. I can honestly say we met many competent nurses, but Jackie ramped it up a notch. Clearly, nursing is her calling. My daughter’s last days were extraordinary. Jackie worked her magic, and I will be forever in her debt for her professionalism, skill and compassion. Someday, I hope the three of us are in heaven sipping our butter beer and practicing our spells.