Sunday, March 29, 2015

Superman Sam

I will start off by saying that I struggled with this post… Talking about patients is something that I usually avoid doing – but with his mama’s support and agreement I am.

Superman Sam. That was his nickname. If you google this you will find him and his story, his story that ended too short on December 14, 2013.
I met Sammy and his parents on the HOT unit where I work. He was just diagnosed with leukemia. Throughout the first few days after he was diagnosed I figured out what is was about them that was just so amazing – they were a happy family. Even in the face of a life-threatening disease – Sammy never stopped playing; his parents never stopped playing with him; his siblings, uncle, grandparents – never stopped being happy and playing.
Sammy relapsed in early spring of 2013. About two months prior to Kevin’s diagnosis. I remember that day clearly. A coworker paged me to tell me he relapsed so I went down to the operating room waiting area to find Phyllis and her parents (Sammy was getting a bone marrow biopsy to confirm his relapse). Now let me tell you, these moments suck. Seeing that family that has just finished months of grueling chemotherapy, infections, etc and knowing it didn’t work. The leukemia was back. We hugged and I sat with them for a while.
Sammy was a funny, funny kid. Days in the hospital included arts and crafts, sword fights, hide and go seek, silly string fights, and playing video games. Gosh – I remember when he was on a McDonalds kick. His parents would go all the time and bring it back for him because it was the only thing he wanted to eat (and of course; they would always bring me back a big’ol diet coke!). Oh this you will all love; those eye stickers; the kinds where the black of the eyes move around; he put those everywhere in the hospital. In fact, I just saw his eye stickers on the second floor of the hospital near an elevator.  When I find them – they stop me in my tracks. The stickers are still here – but he is not.
One of my favorite memories of Sammy was when I would go into his room every morning to examine him. I would sneakily place my stethoscope on his chest while he was sound asleep. About 50% of the time he would be asleep; the other 50% he would lay perfectly still with his eyes closed as if he was sleeping but jump up, yell and scare me! I definitely screamed a few times and woke his parents up! (I have a very, very low startle reflex and can get scared easily!). He would beam with joy whenever he scared me and certainly reminded me throughout the day that he “got me."
After Kevin was diagnosed it became clear that he would need a bone marrow transplant; just like Sammy. When the weeks became closer and closer to the time – it was obvious to me what was going to happen. Both Kevin and Superman Sam got their bone marrow transplants on the same day. This day was emotional to say the least. I took off of work that day to be with Kevin. His nurses at Froedtert were saying that his bone marrow would be given a little later because there was a bone marrow transplant occurring at Children's as well. I just looked at his nurse; smiled a very tired smile and said, “I know." The following days at work were rough. Sam and Kevin were on the same “day." They will always have the same re-birthday.
Sammy’s leukemia came back. He relapsed after his bone marrow transplant. I won’t even begin to try to describe what his parents went through… You should follow their blog here:
The last day I saw Sammy was heartbreaking. He was so fragile. So tired. And not playing. Myself, Matt (coworker), a few nurses, his parents and Sammy were all squished into the room. Dr Margolis was coming in and out and trying to arrange an ambulance to get Sammy home fast so that he could die there and not in the hospital. I dream of this day a lot (or rather have nightmares). Nobody should die of this disease. No one. Especially not an 8 year old boy so full of life. Sometimes I fixate on numbers; Sammy’s white blood cell counts at the time he died was the same as Kevin’s when he was diagnosed.  

It is mind-boggling, soul-crushing, wind-knocked-out-of-you-feeling watching a little boy so full of promise, so loved, leave us. I have asked myself why him and why not Kevin. Why does my love get to be here and Phyllis and Michael's boy doesn’t. Cancer, leukemia, it destroys so many things. As a provider; when a patient of mine dies – it affects me every.single.time. It does not get easier. I become used to seeing my patients and their families at work – they are part of my life. When someone dies – it leaves a hole in my life. I can’t tell you how many times I have raced to my car in order to cry alone. I don’t know how to explain it. This just isn’t a job; it is so much more than that.
The reason I have told this long story – is of course due to my mission. Research is the ONLY way to advance the cure. Research is expensive. Clinical trials that are run throughout the world, the nation, Children’s Hospital of Wisconsin, Froedtert are what saves lives. Please help me raise $50K.
I am so honored to be able to sell a piece of Sammy’s artwork. The kid loved to draw! He had amazing drawings all the time. The one that Phyllis and I choose to sell was a dragon. This is just perfect for my family – my son loves to pretend he is a dragon or dinosaur all the time and “roars” on a daily basis. So check out the link; buy some clothes and support a great mission and get a piece of Sammy’s handiwork.  
In loving memory of an amazing boy, Superman Sam!

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