It's been a rough month on the floor.  Multiple relapses, patients taking a sudden turn for the worse, and death.  I try to tell myself that this is all part of the job and the career that I have chosen; that I knew there would be times like this going into it.  But that is no consolation when it actually happens.  It's not fair.  It's just not fair.  

This culminated for me on Monday when a patient I have been following for almost exactly a year passed away.  He died peacefully and was surrounded by his family.  In the week before his death, when it was clear he was not going to leave the hospital, he got to meet his new puppy (his Make-A-Wish was to get a white golden retriever puppy.  He named him Jack Frost) and was inducted into the army which was his dream, to be like his dad.  He was 10 years old, just a few weeks away from his 11th birthday.  He was feisty, stubborn, argumentative, and one of the best procrastinators I have ever met.  He dreamt up more ways to get out of PT than all my other patients combined, and one time even tried to call 911 on me.  He was one of the most challenging patients I have ever worked with and as a result he taught me more along the way than almost anyone else I have worked with, and I know much of what I will learn from him has only just started to become apparent.    

Even when it was medically clear he wasn't going to make it, I hoped and prayed he would use his stubbornness and defiance to beat the odds and walk out of the hospital.  As I lay in bed on Monday night thinking about him and his family, I realized as badly as his mom and dad and I wanted to see him walk out (he was just starting to walk with crutches), that it was almost fitting that he defied us all once again and flew out of there. 

I miss him.  I saw him every day at 3:00 and 3:00 this week seemed empty without his spunk and energy.  There is a weight on my shoulders and my heart breaks when I think about his family and what they are going through.  I know there will be more happiness and joy as patients defy the odds and statistics and surprise us all.  I hope those cases start coming soon.  For now, I am trying to embrace and recognize the feelings of loss and sadness and trying to allow myself the space to grieve.  Times like these give me a renewed appreciation for the blessing of health and time spent with loved ones.  It is not fair that he didn't walk out of the hospital or that his family has to learn to live without him. I'm not sure what the lesson is in all this grief and loss...maybe there isn't one.  And I guess that's ok, too.  This passage was passed along by the chaplain on the floor.  

  The Task of the Caregiver: We tend to look at caring  as an attitude of the strong towards weak  of the powerful towards the powerless  of the haves towards the have nots.  When we honestly ask ourselves which persons in  our lives mean the most to us  we find it is those who instead of giving  much advice, solutions, or cures,  have chosen rather to share our pain  and touch our wounds with a gentler and kinder hand,  the friend who can be silent with us  in a moment of despair or confusion,  who can stay with us in an hour of grief and bereavement,  who can tolerate not knowing, nor curing, nor healing and  face with us the reality of our powerlessness.

Today I got a reality check in the best way possible.  A little bit of a back story is needed: 

Medical back story:  In the hospital, some kids are on precautions.  This basically means one of two things:  1. They have a highly contagious disease and are confined to their room in order to protect the other kids.  Or 2. They are very susceptible to getting an infection from someone else because their immune system is compromised and they have to stay in their room to protect themselves.  When kids are on precautions, before anyone goes into the room, they have to put on a paper yellow gown, gloves, and usually a mask.  When that person is ready to leave the room, this is all taken off in a very specific order and thrown away.  So regardless of how long you are in the room, you have to wear the garb and take it off before you leave (this can get very tiresome for nurses and other people who have to go in and out of the rooms multiple times a day).  

Patient relationship back story:  Let's call this patient J.  J is a 17 year old who was diagnosed with an aggressive form of cancer two months ago which caused him to suddenly lose the ability to walk.  He had a tumor on his spinal cord and had to undergo emergent radiation and chemotherapy to avoid permanent paralysis.  He basically went from being a typical junior in high school--going to class, hanging out with friends, and playing a little soccer--to being unable to walk, move, or do simple daily tasks by himself.  I met him a couple days after all of this started and was warned by other members of the team about his (understandably) depressed mood and lack of interaction with healthcare providers.  In a series of fortunate events, we hit it off and bonded over soccer.  He opened up about the frustration, pain, and fear that he was experiencing and the difficulty of not being able to go to the bathroom without help from his mom or a nurse (just to name one thing).  Can you imagine being a 17 year old boy and not being able to go to the bathroom without help?  To make what could be a very long story a little shorter, basically, we have a good relationship and when he doesn't feel like doing much, he will at least do a little bit of activity with me.  

  Fast forward 2 months:  J was discharged from the hospital after a few weeks and after extensive radiation and chemo (which made him feel terrible), plus a lot of hard work in therapy, he is now able to walk with a cane and do most daily tasks by himself.  He was able to go to school for a few days last week and got see his friends again.  Then, unfortunately, at the end of last week, he got an infection that landed him back in the hospital.  And now we're back to me having a reality check.  J was admitted to the hospital two days ago and today was the first day he was feeling well enough and strong enough to participate in physical therapy and walk around his room.  J is on precautions because he is both very immuno-compromised and also has a contagious bug that could infect other kids.  So, before going into J's room I dutifully washed my hands and then donned the yellow gown and gloves.  I had to see J early this morning so when I got to his room he was still in bed and didn't have clothes on yet (hospital gowns are very comfortable pajamas I'm told).  We caught up a little bit then he said, "ok you have to leave for a second so I can put pants on" My initial reaction was, "Would you mind if I just look out the window while you get dressed?" As soon as I asked I realized how ridiculous the request sounded.  There is so much privacy that is lost by being in the hospital and I wanted to take away more of it just because I was too lazy to take off my gown to walk out the door.  I immediately started laughing because it sounded so ridiculous and J got a big smile on his face and said, "I caught you!  You were being lazy!  You want to stay in here just so you don't have to take your gown off! No way, you won't let me be lazy, so I'm not going to let you be lazy.  Now get out of here!"  At this point we were both laughing really hard; I ripped the gown off and headed out the door.  He opened the door and let me back in a few minutes later and we had a great session.  

Sometimes, you have a choice.  Laugh or cry.  Smile or frown.  Lie down or keep on living.  This patient profile is about a 19 year old young man, T, who has chosen to laugh, smile, and live despite a diagnosis of leukemia derailing his plans to move out of his parents’ house, go to college, and begin a life on his own.  I knew we would get along within minutes of walking into his room for the initial evaluation.  He had just been admitted to inpatient to start another round of scheduled chemotherapy and was referred to physical therapy because he was starting to show signs of peripheral neuropathy (numbness, tingling, and weakness due to nerve damage from the chemo) in his hands and feet.  When I asked what was going on, he prefaced what he was about to say with, “I know this isn’t that bad and things could be a lot worse,” then proceed to say, “but I can’t play my video games anymore because I don’t have enough control of my hands.”  Turns out he also had a hard time walking to the mailbox, going up and down the stairs, and hanging out with friends because he would get so tired.  But he quickly started laughing and said, “Actually, the video games have gotten so bad, my ‘kill score’ is almost 0 and I got locked out of the game because the company thought I was losing on purpose.  I try not to use the cancer card too often, but I did on that one.  They let me back in with a guarantee I won’t get kicked out again, guess there are some perks to all this craziness.”

  We were about halfway through the evaluation when he abruptly stopped talking, looked down at his shirt, then back at me, and said, “Oh my gosh, I need to apologize for how I look!”  To be fair, he did look pretty ridiculous, flannel plaid pants and a button down, collared Dragon Ball silk t-shirt.  I just figured those were his pajamas, the common attire if kids aren’t in hospital gowns.   Turns out, the shirt was not a pajama top but an installment from the “Hall of Shame”.   T started the Hall of Shame shortly after he was diagnosed with cancer and started receiving all sorts of different care packages, presents, notes, pictures, and food from friends, family, and complete strangers showing their support and sending love and prayers.  T is quick to emphasize how lucky he is for having such an amazing support system and knows that it’s the thought that counts.  But, he started getting such ridiculous presents, he had to display them somewhere.  So, he created the Hall of Shame in his parents’ basement.  It is filled with all the completely ridiculous items he has gotten solely for having cancer.  The Dragon Ball shirt was the first item.  Apparently it was given to him by a friend of a friend—it was used, wrinkled, and shoved into a plastic bag when he got it.  Other items include weird pictures of “famous” people no one has ever heard of, a quilt that was made by a church group in California while they prayed (this sounded really nice at first, but he said it was literally the ugliest piece of cloth he has ever seen), a handmade scarf that is completely lopsided and frayed, and, maybe the best one, a plaque that was presented to him for having cancer.  Not to support his fight against the disease or praise him for his bravery, just a plaque for having it (he said receiving that was one of the more awkward experiences of his life). 

One of my favorite things about working with kids is that they are constantly surprising me.  Yesterday, I was working with one of my favorite patients and somehow it came up that my birthday was a few weeks ago.

 "Aw man!" he said, "If I had known, I would have sang to you!"  

"That's ok" I said, "thanks for the thought!"  

"No, wait a second, we have to go outside."  

We were done stretching anyway, so we got his crutch and walked out of his room toward the nurses' station.  

"Stay here" he said as we got closer.