Callen

It was a warm morning in May when I walked into Nelson Clinic, mentally coercing my blood pressure back down to a normal range after the purgatory also known as MCV's Parking Deck. I settled into a chair in a small room with unflattering green paint. It was the quintessential hospital room: no windows- only bright, fluorescent lights, and a thermostat that was set ten degrees too high. Callen sat quietly a few feet across from me, playing the coveted clinic Xbox- his long, dark lashes fluttering in concentration. His cheeks were a soft pink, and his newly-grown hair stuck out in small tufts and cowlicks. If I had seen him in a different setting, I'd never guess what he's been up against.

His parents, Jim and Katie Tyson, graciously invited me to come to this appointment- and to as many others as I wanted. Katie had prepped me ahead of time of how the day would progress, what would happen and when. This was one of his "big" monthly appointments; it would start with having his port accessed followed by the first dose of chemo, and end with a spinal tap- where they would draw fluid from his spine and then inject it with another type of chemo. He wouldn't be allowed to eat or drink at all that day until he was in recovery. We would probably be there for a very long 6-8 hours.

 

His room was further down the corridor from the common area (referred to as the "Fishbowl") where the other kids could sit together and visit while they received treatments. Because, as if Leukemia wasn't enough, Callen's fight has been further complicated by an infection he contracted in early April. The Parvo virus is rarely serious for anyone with a healthy immune system, but for those who are compromised, it's a different ballgame. For him, it has meant isolation- both at home and also during his visits to the clinic- as it could be deadly for the other patients to be exposed to it. Despite months of multiple infusions to boost his immune system, his body hasn't been able to clear it, and as a result, he hasn't been able to receive his normal doses of chemo. Sometimes he gets half, sometimes a quarter, sometimes nothing at all to treat the cancer. It's been a six-month waiting game and there's still no definitive answers as to how much longer they'll continue to wait.

And here's my humble confession: I thought I had some kind of grasp on what I was walking into, as if knowing the play-by-play was actually enough to prepare me. In my mind, I pictured it to be very textbook, almost like the vague memories I have of my grandfather when he was sick with cancer more than two decades ago.

 

But there was nothing that could prepare me for what I would see. And hear. And smell. Nothing can ready a person to be on this side of pediatric cancer- the pit in your stomach when you momentarily lock eyes with another parent in the hall, when you notice the gray palor of skin, and the protruding bones. Occasionally, there was wailing from behind closed doors, the telltale stench of vomit.

I was grateful that Callen's room was calmer, by comparison. But moments later, when a nurse came in to numb his port and I saw the size of the needle going into his chest, my stomach lurched. I looked over at his mom, studying her face for a reaction. It wasn't the first time I had taken my cues from her, either. Nineteen months ago, I was doing the same thing, but for an entirely different reason. The last few minutes leading up to what was supposed to be a repeat c-section had taken a swift turn, and I had found myself trying to grasp the sudden reality that I wouldn't be awake during the delivery.  It meant that I'd miss Olive's first moments, her first cries, and that Jake wouldn't get to be with either of us until I was in recovery. Muffled sobs seeped out from behind my mask as I laid on the table, waiting to fall asleep. It was then that I felt someone take hold of my arm. I had assumed it was one of my wonderful nurses, only to look over and, instead, see my doctor. She didn't say a word, but she didn't need to. There was an unspoken confidence in the way she squeezed my hand. It was the last thing that I remember before waking up to a healthy, 7 lb, 1 oz baby girl.

 

Those two minutes before I went to sleep continued to resonate with me long after Olive was born because I recognized it to be more than a brief exchange between doctor and patient- it was a moment of genuine humanity and empathy between two mothers. Later that morning once the fog of anesthesia had lifted, I scrolled through the photos on my phone and was shocked to see pictures of Jake in the OR with me, only minutes after Olive had been born- pictures of him standing by the warmer with her, several of him holding her and kissing her angry, wrinkled face. He told me that one of the nurses had been asked to retrieve him just a few moments before she was born- something that was pretty rare, according to her.

I might have been asleep, but that's actually one of my favorite parts of Olive's birth story because, to me, it spoke volumes about the doctor who delivered her. And now, it holds even more significance to me because I see that it's just a smaller piece of what has become a much bigger narrative. When word spread in March of 2014 that Callen had been diagnosed with Leukemia, it was stories like mine- and countless others- which became the very foundation of the mighty village that surrounded Katie Tyson and her family. Because for someone who had continually gone above and beyond to make sure our children were brought safely into the world, the news that her own son was facing this battle felt incredibly personal to so many.

 

A son. Also a brother, grandson, nephew, cousin, friend, classmate. A funny, outgoing little boy who has, over the past year, become way too accustomed to waiting: waiting to feel better. Waiting to eat. Waiting to be discharged. Waiting for his "dizzy tummy" to stop. Waiting for his counts to come up, to be told he can go to a movie or a birthday party. He sits and waits for another nurse, another doctor, another person in scrubs that he now knows on a first-name basis because this has become his new normal. He waits for them to come into the room and he already knows it will involve something that he has to swallow that tastes bad, another needle in his arm, another pump of chemo into his port. And he'll do it without protesting, without so much as batting an eye. Instead, I was the one who felt like crawling out of my own skin.

But the reality is that I can't tell Callen's story without also talking about his mom- the one that I once knew simply as, "Dr. Tyson" but who has, over the last few months, become "my dear friend, Katie." I've learned that her razor sharp wit is even sharper after working a night shift and showing up to clinic at 8 a.m. the next day. I also discovered that she can drink coffee faster than just about anyone I know, that she loves using hashtags in texts, and that she has a pretty big weakness for cake.

 

But underneath all of that is someone with one of the biggest hearts I know. More times than I could count, I watched her interact with the other parents and fighters in clinic- always making herself available, always asking how she could help. Though her capacity to continually put others before herself is absolutely the earmark of a good doctor, so many of us know those qualities to be, simply, her: a devoted mother, loyal friend, and tireless advocate. Because if she fights for the health and well-being of the babies she's never even met, you can only imagine the war she's raging against pediatric cancer for the sake of her own son and for the families who are fighting alongside them.

And here's the thing I witnessed about the kind of hope that the Tysons possess: it's a steady undercurrent that's always moving and shifting, never resting. Sometimes, it takes the shape of letters and words, the sounds of text notifications and blog comments. Other times, it's intensely raw and visceral- tears in bathrooms and parking lots. Some days, it's embraces in hospital corridors, and wrists adorned with blazing blue and orange bands. It's the salt of sweat and the pounding of shoes against pavement. It crosses one finish line and immediately locks eyes on the next. Because there's always another finish line waiting. Always.

For weeks, I wrestled with how to finish this feature. I wanted so fiercely to be able to wrap it up with something nice and neat, to say that hoping will always guarantee the outcome that we want. But in doing that, I'd be doing a disservice to those who know in their very core that sometimes, this isn't always the case. It's so hard to want words for that kind of pain and not have them. But this is what I do know, beyond a shadow of a doubt: that the power of hope isn't dependent on how the story ends. It is never a means to an end. Hoping, itself, is the actual story. It is unrelenting and unapologetic, asking us to be fully present in the moment- whether that moment finds us in a waiting room, crossing a finish line, or down on our knees. And if we're willing to hope that hard, to risk that kind of vulnerability, we'll look around to see that we're not alone. Instead, we'll realize that we're at a beautifully painful, but divine intersection. A sacred space where those who hope with us- whose paths have crossed and circled back and crossed again- have forever changed each other's trajectories.

"He sits and waits for another nurse, another doctor, another person in scrubs that he now knows on a first name basis-  because this has become his new normal." 

Follow his journey:  www.teamcallen.com