This is the warning that should be posted on the door of every pediatric patient on the Oncology floor. Beneath the warnings of “Fall Risk” and “Contact Precautions,” a fluorescent sign should also caution that there is an adorable, yet very sick child, that lies within the bounds of the four walls you are about to enter. Their disease might not be contagious, but attachment is catching.
Mercilessly, our clinical instructors place us with the same patients each week, if they are still admitted to the unit. Quite obviously, this is in the best interest of the pediatric patient but it also led to serious attachment issues for me. When they first told us that we might be paired with the same patients for weeks at a time, I was impressed and excited. It would mean more opportunity to learn about the child, to form a bond, to gain their trust, and of course, to delve deep into their manifesto of medications. As an uncertain freshly-scrubbed nursing student, my underdeveloped emotions clearly were just waiting in the wings to do a gutsy cannonball jump into the swimming pool abyss of my heart.
And what a cannonball it was.
During post-conference on my second to last week in Pediatrics, I almost started bawling in front of my peers while just trying to present on my three patients. I could barely string three words together, much less speak about their conditions and the care that I provided. This is the story I meant to share with my fellow nursing students, instead of the feeble, “I had a really rough day today…I am feeling very sad.”
I haven’t been able to get a couple of patients out of my mind. The first is a young teenage girl who I took care of on 4 separate clinical days. She is Spanish-speaking, and came to the US for the very first time for her treatment because she wasn’t receiving treatment in her country. She flew here alone, with baggage that didn’t need to be checked: leukemia. While there are some relatives staying with her in the hospital, her mom, dad and siblings are all back home, a few thousand miles away. Her relatives are blood-related, but they are not mama y papa. The saddest part to me is that she is clearly wasting away day by day. She is only on her 2nd cycle of chemo, with many more rounds left to go, at least a year’s worth of treatment. She says she can’t eat because food makes her feel sick. She rarely gets up and out of bed anymore. It’s true that chemo causes horrible side effects, and I can’t imagine how unappetizing food must look with the amount of nausea and pain that she’s in. But it feels wretched for me to pull the scale in each day and see that she has dropped another quarter kilo. She lost 3 pounds in a week, and this is on a slight girl who was already underweight upon admission. Each day she sighs when she sees me clumsily rolling in the standing scale. I wish I didn’t have to weigh her, almost as much as I wish I could give her MY stomach full of the nutrients she needs. But of course, that really would be a band-aid solution wouldn’t it? So much of pediatrics is psychological, and it is heart-wrenchingly sad to see the emotions play across her face when she tells me (at first too quietly for me to hear, and the more loudly) that she just wants to go home.
By the end of my rotation, I was thrilled to see her nibbling on crackers waxed thickly with butter. She might only eat one in an hour, but it is something. Her weight had almost stabilized, a milestone even though she is clearly emaciated. I also was privileged to sit in on a session with one of the child psychologists. An interpreter was present, and it was a wonderful example of some of the amazing services that the hospital offers, working together in perfect harmony. She was a little teary, but she told me afterwards that she felt better and it was good to talk. It’s amazing for me to recognize how important these social services are to the kids. Child Life is available for scary procedures (armed with teaching tools, videos and distractions galore); clowns and dancers come in for private shows; and there’s even a Martial Arts team that comes in for “Kids Kicking Cancer.” My little girl is the perfect example of how important these services are. She is physiologically anorexic from the chemo and her depression about being so far from her family. I still hear her voice, “I just want to go home.”
I heard this mantra again on my last week of the rotation, by a very different patient. This little boy, Tommy*, has Down Syndrome and ALL (leukemia). He has the cutest little face and sunny demeanor, or he did, that is, until his chemo treatment began infiltrating his subcutaneous tissue. Seemingly instantly, a cadre of nurses surrounded him, acting speedily to access the site, attempt to suck back out what chemo they could, and then re-access the tender site with another wide gauge needle. As they palpated to find the port, Tommy* got more and more agitated. As many of these little patients do, Tommy has incredible parents. Dad was holding Tommy so he couldn’t squirm away, but it was the most gentle and loving “hug” restraint that I have ever seen. Mom was positioned behind Dad and son, stroking her little boy’s forehead, soothing him and whispering encouraging words. As the nurses continued prodding and Tommy got more uncomfortable and upset, he finally said, “Mom, I want to go home now! I want to go home.” He said it in a way that was so sweet and naive and it just tore at my heart. A nurse looked up at that point and said kindly, “Ok Tommy, how about we start counting now?” Without missing a beat, Tommy shouted, “1,2,3,4,5,6,7,8,9,10!” The nurse smiled and said, “11…” And Tommy said, “12…”
On and on it went until “49…” and then Tommy was silent. The nurse asked, “Tommy, what’s next?” He replied, “I dunno what’s next!” Laughter ensued. Then the nurse said “Fifty!” Tommy said 51, and off they went again. Tommy barely flinched or cried out when the needle pierced his skin. It was truly impressive. I was amazed at how smoothly it all went, even though I was on the verge of tears for most of it. (By the time I met Tommy, I had already dealt with an onslaught of emotions from seeing other patients in various positions of pain and discomfort.)
I think my sadness about “really sick kids” was triggered mainly by another little boy, only 3 1/2 years old, who most likely will not get better. Timothy* had ALL (leukemia) long before I met him. His chemo treatment put him into remission, but also sadly, gave him secondary AML, a different leukemia – much harder to treat. He was treated with chemo yet again, and this time, a bone marrow transplant (the only curative option for AML). He was in remission for quite some time, and then he relapsed. And this is where I met little Timothy. By now, little Timothy also has a host of other complications, and it is nearly impossible to decipher whether it is the chemo or the disease causing these other problems. I met him in week 2 of my 5-week rotation, and by the end of my 5 weeks, it was pretty clear that he will be going home soon, not with a cure, but for palliative care.
Sick kids are so sad. For me. Dealing with death isn’t easy, but I thought I had a grasp on it from my work with the residents in Assisted Living. Now, I realize, that they were the ones making it easier for me. They were so graceful in life and in death. Not everyone has made peace with dying, but my residents taught me that since they didn’t fear it, I didn’t have to fear it for them. I was lucky to learn about death in this way. Maybe some of these same concepts that I learned from my residents can be applied to pediatric patients too, but I haven’t figured it out yet. My pediatric rotation is over, but I am still working through the emotions and sadness I am feeling. I question whether I want to deal with kids that are this sick on a regular basis. Luckily, my school has a number of resources for me, including a clinical nurse psychologist with a specialty in helping children with life-threatening illnesses. I can only imagine what an amazing resource that she will be in my journey as a nursing student.