Editor's Note: Melissa's son Colin was diagnosed with a rare form of leukemia in 2014. He was treated at Children's Hospital of Philadelphia for four years. On April 19, he died at the age of 18. Below, Melissa shares a tribute to the nurses who cared for her son in honor of National Nurse's Week, May 6-12.
I want to talk a bit about the night Colin passed away. It is by no means easy, it hurts a lot. But this week is National Nurse's Week and I don't think people think enough about what this group of men and woman do for us, for our children on our worst days.
I did not wake up thinking Colin was going to die that day. We had begun to talk about the fact that his lungs were failing and not going to be able to come off the vent. The conversations were now not about healing Colin, that was no longer possible. But what had happened to his body, why it wasn't able to be healed, and most importantly how to talk to Colin about what had happened to his body.
It was to a nurse that I jokingly said, I wish we could bring the dogs to see Colin. And in less than 15 minutes she came back into the room and said, "The dogs are cleared to come, I just need the vet's number." I gave her the number and less than five minutes later, she had called and secured their vaccination information.
It was a nurse that was standing with me when Colin asked for the iPad to communicate with me (a person can't talk when they are intubated). He typed out the words, "I am done." It was a nurse that shared my immediate panic that shot though my body, losing all feeling everywhere, as I realized what he was telling me. It was a nurse who I turned to after Colin typed, "Get the meds," and helped me process that he was asking to die and die with dignity.
It was a nurse from his advance cared team that had given me her cell number, who I texted simply, "Come back right now." And even though it was the end of a long day for her, she came back. She and I questioned Colin multiple times and each time, he clearly expressed that it was time, he was ready and wanted the vent out. So, it was a nurse that started the process with the doctors after she had listened with every fiber of her being to hear and support Colin. It was that nurse that looked at me and asked if I was ok with this, could she go ahead and start? And while shaking and trying to think past the buzzing in my ears, I said get what he needs. She then didn't leave the room, stayed with us the whole time and didn't leave my side for hours and hours, until I was ready for her to do so.
The goal was to have him sleep deeply enough that his body wouldn't panic when the vent was turned down and then off to allow his lungs to fail naturally and end his intense suffering. It was this nurse that spent hours with me, leading up to this moment, answering countless questions as I sought ways to help Colin get more time, to avoid him having to die. It was this nurse that then helped me come to terms with that fact that his strong will to live wasn't aligned anymore with what his body could do. So, it was a nurse that helped me come to terms with being able to support Colin in letting go when he was ready.
It was a bedside nurse that ran back and forth to get the meds Colin needed for over three hours. Tirelessly working at a fast and furious pace. It was this same nurse, that once Colin had passed, showed us compassion and caring and guided us what to do, second by second, keeping me from drowning in the shock I was feeling.
It was a nurse, even after Colin had passed, that kept a hand on Colin every moment she was talking to me, helping me, guiding me as she brushed his hair to the side, kept a gentle hand on his knee and helped me get a clipping of his hair.
And to be able to leave that room, to leave my son behind, it was the nurse that reassured me that she was going to transport Colin to the morgue, not some stranger. And that is what made it possible for me to walk out the door leaving my first-born son behind.
And this was only 24 hours, a snapshot of the past four years of hospital stays. My son and my family have been helped, cared for and saved by nurses time and time again. It was a nurse I ran to, literally in a panic, almost hyperventilating, when Colin was moved to the pediatric intensive care unit who pulled me back from panic, set me back on my feet and gave me the strength to go back and fight for Colin.
A bedside pediatric oncology nurse works 13 hours a day – sometimes more. They may or may not get a 30-minute lunch break. They rarely sit, they are always running to do something, get something, stop a pump from beeping, solve a problem, communicate with a doctor, arrange for a test, get supplies, trouble shoot, clean up all messes (blood, bile, feces, urine, mucus, vomit) with a kind hand and smile. And in between those tasks make the mom that is worried to death feel better, safer. It is emotionally and physically exhausting but they do it day after day. It's a private world that so few get to glimpse.
Please say a silent word of thanks that these nurses have what it takes to do what they do, just in case you need them for your child. And if you do, they will be there for you, by your side every, single second. That, I can guarantee.