I had just joined the pediatric hematology-oncology service, and I was assigned a new patient to follow. I was greeted by a wide-eyed, slightly undersized 8-year-old boy, with scattered freckles and a broad smile. I introduced myself and started with a few icebreaker questions.
His mom, watching TV, sheepishly interjected, “Son, tell him about that girl you like.”
“Eww girls are gross!” A yelled, quickly turning his head towards her then burying his head into his pillow.
“Come on, A, you can tell me her name,” I prodded.
He turned to me and smiled. He put one hand to his mouth, blocking off his mom’s view of his lips, and motioned for me to lean in. He whispered her name and smiled.
“You ask her out?” I asked.
“Not yet,” he said. “But I will.”
“I’m going to hold you to that, bud.” He nodded. “Don’t tell my mom.”
“What are you boys talking about over there?” His mom yelled out.
“Nothing!” he yelled back, giving me a wink. “It’s a boy secret!”
“Keeping secrets from your mom?” She shot back. “Looks like someone’s getting Barbie’s for Christmas.”
A whipped his head towards her.
“Ahhh dude! You’re killing me!” He buried his head in his pillow.
Both his mom and I started laughing, and eventually a smile emerged from the corner of his pillow.
A suffered from a sudden severe bone marrow condition which prevented him from forming new blood cells. He had no white blood cells to speak of and presented with an acute, local infection. The hope was for him to clear the infection, then get some longer-term therapy.
I immediately bonded with him because even though he was gravely ill, he acted like a typical eight-year-old kid and shared with me his eight- year old life. He revealed to me his budding love life. He told me about the ups and downs of his backyard soccer career and love of Italy (“I wish I were bigger so I could be on the Italian soccer team – those guys are sick!”), as well as the people on his blacklist (“That kid is so gross, he like picks his butt!”).
He LOVED playing videogames. One day, when I came in, he was busy playing a Scooby Doo game on his Nintendo. I tried to finish my physical exam without bothering him, but as I was listening to his heart, he asked, “Do you want to play with me?”
He was having trouble beating this level. “I just don’t get it!” He said.
“Don’t worry, bud,” I said. “We’ll figure this out.”
The next half an hour, we worked together and eventually got it. “Dude, we did it!” He said as he leaned in for a hug. It was the most important accomplishment of the day for him.
“I bet the next level is impossible!” He said.
“You say that about every level, man,” I replied. “You always figure it out.”
“I guess — ”
“I think you can do it. By the time we come back for rounds, I wanna see some progress.”
He smiled: Challenge accepted.
Over the week, things were looking up. The infection seemed localized, and he was going to be transferred to the bone marrow transplant unit for longer-term therapy. Meanwhile, I was reflecting with my resident how A was the first patient with whom I had really connected.
However, by Friday afternoon we received word that the infection was much more lethal than expected. Since A didn’t have the white blood cells cells needed to fight the infection, it had a near 100% mortality rate. His prognosis was extremely grim. Though he was not my family, I was devastated when I heard the news. I tried to maintain my composure emotionally that afternoon, but I found it almost impossible to do so. It was so hard to fathom someone so young and with so much life to live suddenly passing.
Luckily, I escaped the hospital floor to clear my head and eyes and meet with a couple advisors. They said they most regret the times they’ve allowed bad news to make them retreat. I realized how tempting
that was since that was my initial reaction. I headed back to the floor and stayed with the family for the evening. His dad and big brother had just arrived when I returned. His dad was talkative and shared with me the stresses they faced with limited financial means, one car, and their entire family in another state. When the attending and fellow needed to speak with the parents alone that night, I took the older preteen brother for a walk. After a little videogame-based icebreaking, he shared how hard it was for him to see his little brother going through this.
I’m so happy I went back to the hospital that night. Those few hours were among the most powerful of my life, as I resolved to genuinely care for a family I had only met days before.
The week after the initial shock of the diagnosis had its emotional ups and downs, but I tried to figure out the best role I could play. My resident, fellow, and attending were all extremely supportive and willing to share advice and allowed me to spend a majority of my time with A. I also talked to and was blown away by the support from my friends, family, and mentors from all stages of my life. As one palliative care doctor suggested, “it’s the patient’s moment – just be present and they’ll tell you what they need.”
I continued to become close with A’s family. A just wanted to be a kid, so we played Mario Kart and talked about his “unique” views on life. His parents were always warm and welcoming, but over the week became very honest about their struggle, both emotionally and financially.
By the end of the week, his dad would greet me with a hug and
say “you’re family now!” His mom was especially inspirational – incredibly loving but also fiercely independent and pragmatic. She’d often say, “I’m not one of those people who goes, ‘how could this happen to us?’ It happened. I can’t change it. I just take it one day at a time.”
On my last day on service, when I entered the room, his dad excitedly handed me an envelope. It was a photograph of the family on vacation in Florida – A was appropriately wearing a “Man of Steel” shirt. On the back was a gift I’ll cherish for the rest of my life. It was a thank you note written by A and his brother, telling me I was part of their family forever and to never forget them.
I didn’t realize it was possible to be both incredibly happy and sad at the same time. Gestures I thought small were meaningful to a lonely family in a big hospital with no nearby relatives and few financial means. But the willingness to become close did come with emotional challenges. I cried more in those 10 days than in the past 10 years. With each day,
I became closer, and it was hard not to bring work home, even when no longer on service. I felt an emotional catch-22. I felt part of the family but knew I was not.
When I left service, I knew A would most likely pass away in the coming months, but I continually reminded myself of the resiliency
of kids. He still had fight in him, but in the end, that’s not what it is about. It is about making the most of whatever time he had left, be it
3 days, 3 months, or cure and 30+ years. At that moment, he was an eight-year-old, doing and thinking about eight-year-old things – he wasn’t getting down about how he might not drive a car or go to college. Those are emotions I imagine since I’m older. He was a young kid and just really wanted to beat me at Mario Kart. It was tough to see him get sicker each day, but he still had that childhood spirit in him. And for his parents, who did think about all the things he might be missing, I tried to remain present during their time of need.
Over the coming three months, I continued to visit A and his family. I had switched from Pediatrics to Surgery, but I tried to visit at least once a week. The transition from “medical student” to “friend of family” was nice in some ways, but challenging in others.
During the month after I left service, A was doing well. He had transferred to the Bone Marrow Transplant unit and was receiving specialized care. Things were looking up as they gave him white blood cells from his mom and waited for bone marrow transplant.
When I finished early from Surgery, I would stop to play. A continued to be incredibly adorable and affectionate. He would never make it easy to leave. When I tried to leave once, he said he’d pay me $20 if I came every day (and pulled out a thick wad of 20s). We thankfully reached a non-cash compromise. When he found out I was single, he blurted out, “Dude! Just go online and find a girlfriend! What are you waiting for?” One time, he asked me how old I was. When I said 25, his mom commented on how young I was, and A blurted out, “Mom, can we adopt him?” When I left for the weekend once, he gave me a button with a picture of him and said to wear it so my friends would like him. For those few weeks, it was fun to stop by, especially after a day spent in the OR. Things were moving forward with a transplant date in a month’s time.
Unfortunately, the next couple weeks did not treat A and his mom well. He developed a recurrence of the same initial infection, which caused significant pain and swelling. Most days, he was too tired or pained to talk or play.
I would still stop by, but I could sense his deteriorating state was taking a toll on both his family and on me. I started to dread visiting and seeing him get sicker.
I realized I was becoming too emotionally invested to the point where my mood was determined by his clinical state. I had to force myself to step back; being emotionally drained was helpful to no one. With Surgery ramping up, for the next couple weeks, I called each week but did not physically visit. I did so knowing he had a great team and support system in the pediatric bone marrow transplant unit. After some time and self-reflection, I started to visit again. He was still very sick, but I sometimes managed to get a smile out of him.
Thankfully, A’s story has an interval positive ending. He finally
got a bone marrow transplant and after a few really crummy weeks, he started to make his own white blood cells without much rejection. More importantly, his eight-year-old spirit started to re-emerge after months
of fever and misery. He was stable enough to be discharged (and tell me all about the Saw movie franchise). I was on OB-GYN and down the hall, so I was able to be part of his confetti parade out of the unit.
One insanely difficult chapter of their lives was finally ending, and another journey outside, with both challenges and excitement, had begun. He and his mom are among the strongest, most resilient, most patient, and kindest people I’ve ever known. I hope he continues to live life with few complications going forward and see his childhood play out as normally as possible.
It was one of the most emotionally charged four months of my life, one that made me more compassionate, more emotionally balanced (eventually), more spiritual, and more appreciative of Duke and the people who make this community special. In particular, I owe so much to the months of support from Dr. Wigfall and my close friends.
Whatever happens, getting to know A and his family has been among the greatest gifts of my life.
It allowed me to connect so deeply with and provide support to a loving family, one that invited me into their lives in a way I never thought possible. I know that I will never forget them, and I’m going to be a better doctor and person for having known them.
Vinayak Venkataraman is an MS2 who enjoys writing, cooking Indian food, playing tennis, drinking coffee, and cheering for the Buffalo Bills.
