Walking the JourneyMisty Lahti Sep 15, 2020
Seven years ago, I met a patient in our Pediatric Intensive Care Unit (PICU), she was a 1 year old who had been diagnosed with type of leukemia that would kill her if she didn’t have a bone marrow transplant. I bonded with her parents during her prolonged stay in our PICU and I bonded with her.
Our oncology unit is across from our PICU and I often walk through it when I go home at night. I found myself stopping by just to check in on them, make sure they were okay, or explaining things more thoroughly than their busy nurses or doctors were able to. I got to know them better. As the months progressed during their search for a bone marrow donor, I got to know all of them better. Sometimes I’d bring them a treat or if I knew her mom was working all day and her dad had been with her all day, I’d offer to go sit in her room on my lunch break, to help break up the unrelenting reality that their child was fighting for her life.
I had never done this with a family, gotten to know them so intimately, it at sometimes felt a bit weird, but never unprofessional. I cared about them, because of proximity and because of the ease of connection with her parents, I became like an aunty to Sofia. Even when she was discharged home I would go visit, check in on them, ask how things were going and try to be a source of information, but mostly just be a friend to talk to in a process that so many lay people don’t understand.
I had the privilege of walking through the entire journey with them, the rounds of chemo, the bone marrow transplant, the good days, and the very bad days. I was privy to their innermost thoughts and feelings, to the winnings and failings of our medical system. What our hospital and team did well and where they had room to improve, by this point I had removed myself from being involved in her medical care.
The journey I went on with Sofia and her family is what led me to palliative care. I saw how we could do things in a more wholehearted and loving manner for our patients and our families. I saw where we left them hanging, the gaps and the holes and I desperately wanted to do something different, to make it better.
Sofia’s bone marrow transplant did not work, and she was not a candidate for any other treatment. We knew she would die; we just didn’t know when. They were given a ticket to live, to do all the things they could with her, before the cancer came roaring back, because the next time, it would kill her. I went to their house often, we played with dolls, we said silly things, we ate ice cream. We all made the choice to live, even in the face of death.
Her parents planned to celebrate that she had lived a year from her diagnosis, so they planned a celebration of life. A week before the party, her cancer came back with a vengeance, we knew she had a matter of days. They vowed to continue the celebration, they wanted to be grateful for each moment. The day of the party I went over early to help out, her mom asked if I could stay with Sofia while she took care of the details. I laid down on the bed next to her, made sure her oxygen was in place and held her hand. She didn’t have much energy. We listened to music as she drifted in and out, we stayed that way until the party started. I never would have expected to have such a profound experience. I had been around plenty of dying children, I had helped many parents transition through this process and yet, this time, I was grieving her loss myself felt so profoundly blessed to have transitioned from nurse to aunty in that moment. To be a PICU nurse and feel all the feelings and loss and to be a part of her sacred journey into death. I would not have changed it for the world. The party went on, she was barely awake for it.
Two days later I got a call in the middle of the night, it was happening, I rushed to the hospital (her parents did not want her to die at home) In the early morning hours, I stood, surrounded by her family, who had become my family and gazed at her tiny body. After she died, the nurses who were closest to her bathed her and we surrounded her gurney and walked her to the morgue.
Her parents asked me to speak at her funeral, I wanted to do my best to honor her and her family, but what could I say that would make any difference? I settled on an idea “Your true love story is all around you.” Sofia’s life and death had brought together a large family, a hospital community, and so many others. Her family held at least thirty bone marrow registry drives for Latino and mixed-race individuals, it helped to save at least ten other people. It was not the ending we wanted and yet it was still a love story.
I have not had that type of bond with a family sense, it’s been seven years and I am still close with her parents. Their story, with me helping to support this family through a harrowing time where most decisions had dire consequences, helped me to see why we need strong palliative care practitioners to know the whole story of the family and their child, to support them through the entire process. Sofia’s legacy continues to live on as I finish this degree in Palliative Care and work to bring more life-giving resources to our patients and families.