Like others, I'd spent last weekend in that state of stupefied disbelief, the place where ~
it can't possibly be true ~ echos in the ears, as one clings to hope in that space of transitional safety before reality slaps one silly with the cold facts.
Pediatric cancer specialist James B. Nachman, professor of pediatrics —affectionately known as “Doc Nach”—
died Friday, June 10 from a suspected heart attack
while on a rafting trip in the Grand Canyon.
He was 62 years old.
~
In late March of 2009 I'd sat up half the night composing a letter to the highly-recommended Dr James Nachman, detailing Erin's treatments and relapses since her 2006 diagnosis with Ewing's sarcoma, and declaring our intention to seek another set of eyes to ensure we were giving her the best life we could since it was apparent that the cancer was gaining the upper hand. I'd sent it to the email address on his U of C profile page, the one chronicling the education, accolades and clinical specialties of this esteemed, prominent physician, and figured
when I didn't hear back from someone within a day or so I'd call and try to work my way through the make-your-first-appointment system of this giant medical institution.
I had an answer by 7:30 in the morning ~ not from his secretary, not from his nurse, from the man himself.
I'm happy to see her. Call this number and I can see you any time next week. JIM
Next
week?
Any time?
Jim??
Five days later we met the man. He walked into the room, wearing neither the bright white coat boldly announcing his profession nor a demeanor pompously boastful of awards and international renown due to 30+ years of expertise in the field of pediatric oncology. Instead, wearing a huge smile, a red golf shirt, casual slacks and a pair of Merrells, he burst into the room and invited us to sit. Welcome!!
With hands extended in introduction and a make-yourselves-comfortable affability, he leaned back in his chair, relaxed, as if lounging in the den waiting for the pizza to arrive before the 1:10pm Sox game began on TV. We began to recount Erin's history...
the facts, the pathology of the animal in the room.
After a bit, he turned his attention directly toward Erin and, with a
no-bullshit-served-in-this-space honesty, said ~ Now, we know we can't cure you. So, I want to know what's important to you. You're a senior in high school. You need to stay in school. You have finals in a few months, a graduation ceremony to attend, the prom for heaven's sake, and college... you have made college plans for the fall, haven't you? What do you like to do? You coach volleyball? You like to swim? Great! Here are my ideas for treatment, most of which you can do at home. Think about things and let me show you around the place here and introduce you to some folks...
As we watched him interact with his nurses and the patients during our tour, his genuine affection for all and, in turn, their reciprocation of that same devotion began to solidify the essence of the man before us. This larger than life personality then found a scrap of paper and while scribbling on it said ~ Here's the office number, my cell phone and my home phone. You already have my email address. Go home and talk about what you want to do, and when you've made your decision, just let me know. Dave and I stared incredulously at this piece of paper in my hand, cell phone? home phone?? and then back at the man who had grabbed our daughter - this 18-year-old proud young lady / scared kid with cancer - pulled her to his chest and, while kissing the top of her head, wrapped her in his giant wingspan of genuine compassion. And I knew, a la Jerry Maguire, ~ "He had her at hello." ~ a tough sell for a teenager who hadn't been particularly interested in any changes, who'd had far too many in her altered existence since her diagnosis.
We'd never seen anything like it. We'd never met anyone like him.
We'll go home and think about it and we'll contact you ~ we faked.
He had Dave and me too. Hands down.
This gregarious individual owned a set of shoulders broad enough to not only offer rides to his younger patients as he hoisted them onto his 6-foot plus frame to carry them around the rooms of the SPA, but their amplitude leant balance and perspective to the lives of frantic parents as he bore the weight of the responsibility of determining the best medical plan to cure when possible and to palliate when not.
His way of life set a personal tone consistent with the advice he gave his patients; this man who flew across continents to speak at conferences, made regular trips to St Jude's in Memphis and took kids to Sox games and on rafting trips in the Grand Canyon ~
live in the moment, pack it in like there's no tomorrow, grab it all.
In doing so he helped give Erin, and I'm certain many others like her, the guts it took to outrun the emotional effects of this disease through the integration of necessary treatments with day-to-day activities consistent with normal teenage living.
To hell with low counts. You feel fine? Great! Focus on today. Seize it.
True to his word when he'd shared his cell and home phone numbers, he answered each time we called in emergent situations as the disease began to gain speed. He answered when Erin just wanted to check in with him. Even while out of state, he'd responded - once, to a frantic 5:30am call to his cell phone,
There's horrible pain!!! ~
take her down there, I'll call ahead, they'll be waiting for her ~ and of course, they were. Each and every one was, with open arms.
In spite of an explosion of cancer in her body just two weeks before she was to begin college, he told her to go.
We can admit you and give you chemo on weekends. We'll take care of things that come up.
email, August 26, 2009, after spending the previous night in the ER receiving a transfusion and IV antibiotics due to this last chemo regimen
Subject: Helllooooo!!!
Hey Nach,
It's Erin.
Last minute questions that don't require calling you.
1-- Take bactrim normally this weekend even on anti-biotic?
2-- Can I just take the 1 1/2 bactrim at the same time in the morning? I have a feeling I'll forget to take the 1/2 at night. I have before...oops.
Okay well I'm off to college tomorrow. Please email back so I know what to do and mom knows what to do!
Peace Out DUDE!!!
Yep, DUDE! He responded promptly, as always. And off she went to college until the end of October. A challenging two months. Two more months of near-normalcy that would never have been possible if not for Dr. Nachman.
In a state of panic the day after Thanksgiving, we'd phoned his home for the last time as Erin had begun to experience sudden, extreme, overall weakness. She spent the following six days in the hospital. He came daily, and several times when he entered her room, he'd shooed Dave and me out and let her RAGE at him, exhausted, and furious at the injustice of this disease's capability to rob her of control over her own body.
I'm done Nach. I can't do it anymore.
I know sweetheart. I know...
And then he'd sat with us and told us he believed she had some fight left in her, to take her home and to be at peace with all we'd done for her for three years.
It's important to be at peace with yourselves.
And on the last day in the hospital he came to kiss her goodbye, and then he came back later that day to kiss her goodbye again.
How did he kiss all those children goodbye for 30 years...
Two weeks later, she died in our home. He was right, she did have some fight left in her, along with balanced resolution. She was unequivocally ERIN until her last breath.
I can't begin to imagine how far the impact of Dr Nachman's death has spread - from the halls of the U of C where he spent years with his brilliant colleagues and the nurses who adored him, to the international committee members with whom he conferred, to the healthy children like those he accompanied on his Grand Canyon rafting trip, to his surviving patients, to his present ones and to mothers like me, sick at heart, feeling as though another family member has died.
The number must be a staggering figure.
His voice forever echoing in my mind, Erin was truly blessed to have been under the care of this one-of-a-kind treasure.
HELLOOOOOOO!!!
