Amos is at home now and we are all so completely over joyed that we don't really know what to do with ourselves. There is still a long way to go in this for Amos, and I think the possibility of relapse will live in the back of my mind the rest of my life. However, for now, right now, we are good, and that means that we give thanks for everyone and everything that has transpired over the last eight months. That said I want to copy and paste a letter that my wife, Christine, wrote to the beautiful souls in the ICS unit at Primary Children's Hospital in Salt Lake City. Here it is:
Dear ICS nurses, doctors, and staff:
Amos has been home now for about two and a half weeks. It’s been quite the adjustment being home. I no longer have the luxury of relying on the nursing staff to keep on top of meds, help keep Amos entertained, and also help me keep my sanity. EVS doesn’t come to the house and clean like they did in the hospital room, and no longer can I dial 2FOOD from the phone to get a quick low-microbial meal. With that being said, this thank you feels overdue.
I remember the first time I had been to Primary Children’s. It was October 9th, 2013. Amos and I were there for a cardiology appointment. As I attempted to navigate my way to where our appointment was, I remember thinking how I hoped I’d never learn my way around the hospital. I certainly didn’t want to know anyone that worked here. Little did I know that on July 11th, 2014, Primary Children’s would become our new home for the next eight months. As much as you never wish cancer on any one, let alone your infant child, I will say that I must now renig a little on my earlier thoughts. I am actually blessed to know you.
It was you who carried us through the worst time in our lives. Family and friends have been a tremendous support, but to be in the trenches was an entirely different experience. You face this every day. From the diagnosis, to treatment, to finally getting to ring the bell, and hopefully for us, to a routine set of clinic visits until one day even those are unnecessary. That is what you do, and I have to say that you do an amazing job.
Amos is one lucky little boy. Not every child in his circumstances is fortunate to have a world-class pediatric healthcare facility right in their back yard. You didn’t just heal him, you loved him. From day one, you took him in as your own. Even when you weren’t his assigned nurse or doctor for the day, that didn’t stop you from coming to check on him anyways.
I can’t tell you how thankful I am for how you’ve treated my son, but I also have to say that you’ve been a life saver to my family. Anyone can tell you that this is a hard road. The stress of cancer, chemo, and a bone marrow transplant is overwhelming, all the while trying to keep up with work and daily life. While you were there, loving my son, you were also there for me. You listened, really listened, both about what I thought was going on with Amos as well as how I was feeling. You shared your stories of life’s challenges with me. You taught me that EVERYONE has their story, and there is something to learn from that. I think it is your stories that make you so good at what you do. You told me it was okay to be mad. You validated me when I didn’t want to talk to people with a healthy baby. You cared enough to get to know my family, and cared about them just the same as you did Amos. You saved my marriage.
You were our home away from home, for a long time. We still have a very long road ahead of us, but so far so good. He’s doing well at home (and yes, still wants to party in the middle of the night).
Even though it’s only been a few weeks, I really miss you. You quickly became part of my family, and for many of you, there wasn’t an opportunity to say a proper goodbye. I miss Amos having a variety of playmates other than just Dad, Grandma, and I. We miss seeing him with you and watching you teach him different things while playing with him like his joy was your only concern of the day.
All that said, I hope I never have to see you in that capacity again. I’d much prefer the delight of merely the occasional clinic and social visit to the floor just to check in to make sure everyone is doing okay now that Amos isn’t inpatient anymore.
I can’t begin to say thank you enough to come even remotely close to the love and thanks in my heart for what you’ve done for my family, so I’ll just leave at this: Thank you, really.
Christine Robinson
