Serial 1:11 of "The Emily Updates"
Sharing a 30-year-old diary of my firstborn toddler's cancer battle
Chapter 1
The Past as Prologue (I): Discovery
Sunday, July 3rd, 1994 (D-Day minus 5)
Emily and I are staying at my parents’ house in my hometown of Boscobel, Wisconsin. Vonne is back home in Virginia, putting in her regular shifts at the store. Also visiting that weekend in Boscobel are: my Great Aunt Catherine; my older brother Andy and his three boys Jonathan, Daniel, and Michael; my oldest sister Cathie, her husband Steve, and their kids Brendan and Gemma; and my older brother Jim.
I get up and go to the 8 a.m. church service with several others and, after breakfast, get Emily dressed to go over to the nearby city park with her cousins, Uncle Steve, plus family dogs Zee and Corky – a pair of West Highland Terriers. Just before we leave, I take Em-Cat into the corner bedroom to change her diaper. Emily has, in recent weeks, just about mastered potty training, but Vonne and I decide to suspend that effort during this trip.
It’s right at that moment – as Emily lies prone on the pullout bed with her arms back over her head and her pelvis tilted forward – that I notice this odd bump about an inch in diameter moving under her skin, just to the left of her bellybutton. I can only see it when she shifts her torso around. At first I think I’m seeing things, but as I feel the lump, it strikes me as definitely odd. I figure it’s got to be something natural that I’ve just never felt before, so I finish and we’re off. Still, on our way out the door we pause to have my sister Cathie take a peek. But nothing can be felt when Em is standing up, so Cathie is perplexed as to what I think I felt. We conclude it’s the typical two-year-old’s swollen-belly shoving something to the forefront that neither Vonne nor I ever noticed before. What else could it be?
Em and I and the others head off to the park. Emily, to her great delight, walks Corky on his leash on the way there. Once at the park, I pull out the camcorder and shoot about 30 minutes of video of the kids all playing together. But the entire time I’m filming I can’t get this lump-thing out of my head. As I watch Emily cavort with her cousins via the black-and-white images of the viewfinder, I keep wondering if my imagination’s running wild. After all, I had two false scares about cancer as an adolescent: once with a lump in my neck, and later with a slew of negative mono tests that pointed to leukemia as the only other conceivable diagnosis. But both were just that – scares where imaginations ran wild and the facts proved otherwise. Am I just letting my mind race this time too?
When we get back to my parents’ house, I take Emily back into the corner bedroom to examine her again. This time I probe her abdomen a bit with my hand, trying to feel the area around the moving bump. Jesus Christ! I feel this very large hard mass, over to her right side and up a few inches from her bellybutton.
“What in God’s name is that?” I exclaim to myself. “That’s just too weird.”
I tell Emily to keep lying down while I get Cathie and my Mom. Both feel Emily’s abdomen while she’s lying down and both agree immediately – the lump is strange, but that larger hard mass is something altogether outside the norm. My Mom immediately offers to call the hospital and tell them we’re coming to the emergency room. Cathie presses me to go as well.
“Better to check it out,” my sister says.
I call our HMO Humana’s 800-number and talk to a nurse. Sounds like an umbilical hernia to her, but “here’s the approval code number so you can go get it checked out anyway.”
So off to the hospital go Emily and I, with Cathie driving her car. Grandma Colleen soon follows – as if she could be kept away.
Emily is seen by Dr. Aguilar, who tries repeatedly to get a good feel for the lump and the alleged large mass. Emily makes it very hard because she’s so scared, especially after the phlebotomist lets her first needle pull free when drawing blood. Aguilar orders a complete blood count with liver profile, plus an abdominal X-ray. The X-ray is inconclusive. The liver profile shows some enzymes slightly out of whack, but nothing significant. Aguilar is never able to get Emily to lie still on her back with her arms raised as I did earlier, but we don’t yet realize how important that is for locating the mass. Neither does Aguilar, who concludes with certainty that the lump is simply an umbilical hernia.
“It’s no big deal,” Aguilar says. “Don’t cut short your vacation. Just see her pediatrician when you can after you get home. It’s a simple surgery, really. Don’t worry. But do have those liver numbers checked out. Those are still a bit mysterious. Oh, and please be in touch with your insurance provider about the bill.”
In retrospect, it was pennies on the dollar.
Grandma Colleen drives home, a bit shaken as she always is by such trips to the hospital with her loved ones, while Cathie, Emily and I walk the three blocks back to the house. Emily runs rings around my older sister and me as we discuss our relief that things hadn’t turned out worse. I wonder out loud if I should stay for the Fourth of July festivities (I had planned to run in the five-mile road race), but Cathie encourages me to go back a day early, because then I’ll save a vacation day for Em’s surgery down the road. As soon as we reach the house and greet Emily’s just-arrived Great-Great Aunt Catty, my Mom offers to drive us into Madison tomorrow if it’ll help get us back any sooner.
“Move quickly,” Mom counsels. “Better to have you own pediatrician check her out. Call the airlines now. God forbid it should turn out to be anything worse than Aguilar said and you later feel bad about the delay.”
“Okay, okay!” I say, and make the phone call to switch flights. I also call Vonne, knowing she’d be home from work now. She agrees instantly.
“Bring my daughter home right now,” my wife says.
That last night in Boscobel Emily has a blast playing with her cousins in the basement. I shoot a roll of film, and also have a couple of long phone conversations with my younger brother Ted, whose rotation that month at med school in Iowa just so happens to have him in the pediatric oncology unit, or peds onc. We talk mostly about what could be wrong with the liver. Liver cancer seems far-fetched, Ted says, but that’s assuming that whatever is wrong began there. We agree to keep in touch on a daily basis.
Em later has ice cream in the living room as she plays with Corky, Grandma’s beloved Westie. Everybody goes to sleep that night a bit concerned, but I feel like I’m doing the right thing by going back early. Hopefully, the liver thing will prove to be as innocuous as the umbilical hernia.
Monday, July 4th (D-Day minus 4)
My Mom, Emily and I are up and out at the crack of dawn to drive the 70-plus miles to the Madison airport. We stop at a market on the way and get some brats and cheese to take back to Vonne. The flights are uneventful. The layover at O’Hare is kind of funny as Emily puts on a wild show for some adoring strangers who are trapped with us in a terminal waiting for the flight to Dulles. Vonne picks us up after work and spends the drive home hugging and fussing over Emily.
As we drive up the hill on Grandstaff Court in Springfield, our townhouse comes into view and a shocking sight greets me. Our pear tree in the front yard had changed from its soft green to a blazing red. The leaves are so brilliant that they look as if they’re on fire. It’s very spooky, to say the least, almost as if God had marked the house while we were away. An omen? A sign of bad things to come? The universe out of whack? Or maybe a warning? Maybe like the blood markings on the doors of Pharaoh's Hebrew slaves to let God know he should spare that family’s first-born when he visits his final plague on the Egyptians.
This kernel of panic swells in my chest. What in God’s name is going on here! I feel like I’ve walked into the movie long after the opening credits have rolled. None of this makes any sense.
Later in the evening Vonne and I discuss our fears out in the open. Vonne also reveals that, because Em and I came back early, the window of opportunity that we assumed we would miss is now still open. We’ve been trying to conceive our second child for several months now.
Tuesday, July 5th (D-Day minus 3)
I decide to take the day off anyway. We call the office of Emily’s pediatrician and get the 9:30 slot. We three head off and subsequently meet Dr. Mehrdad Javedan for the first time. He’s replacing Em’s previous pediatrician due to the Humana take-over of our old HMO. Javedan is 25 years in the business – in this area.
Javedan immediately impresses us as a nice guy. He listens patiently to our story, asking detailed questions, and then checks out Em by carefully recreating the exact body position she was in when I first came across the lump. He quickly dismisses the notion of an umbilical hernia. The lump is attached to the swollen hard mass, which he thinks may be the liver, or possibly . . . the kidney. Techs draw some blood and we help Em produce a urine sample. Javedan checks the X-ray sent on from Boscobel.
“Too little info,” he says. “An ultrasound is the next logical step.”
Recalling Dr. Aguilar’s snap diagnosis back in Boscobel, all I’m thinking at this point is, “Our Indian doc is better than your Indian doc.”
At this point, the good doctor sees how scared Vonne and I are and assures us – in no uncertain terms – that he’ll follow through on this no matter what, and that, if any specialists are needed, he’ll have the very best at hand as fast as possible. The receptionist reports that Friday morning is the earliest they can work in Emily for the ultrasound.
“It’s only three days away,” says Javedan. “That’s fast enough. We’re not likely to find anything that bad, but we’re taking the next logical step with all reasonable speed. Go home and keep her quiet until then.”
That night I speak again with my brother Ted. He agrees that the ultrasound is the logical next step. We talk some more about livers, and Ted thinks a benign cyst is more likely than cancer since the latter would be so odd in such a young kid. He promises to ask around his workplace about the kidney possibility.
Vonne and I fill up on dread tonight. This is all just getting too fantastic, like we’re in a movie.
Wednesday, July 6th (D-Day minus 2)
I spend a good chuck of the day in my company’s library, researching livers. That night, Ted and I worst-case the liver and kidney scenarios based on info he obtained. Ted talks about cancers known as neuroblastomas, which seem the most likely path to something going catastrophically wrong with the liver – if that’s the problem. In discussing the kidney, Ted mentions Wilms’ Tumor for the first time. It’s a form of pediatric cancer named for the doctor who first described it.
This evening Vonne and I contemplate cancer with a two-year-old.
Thursday, July 7th (D-Day minus 1)
I spend a good chunk of the day in my company’s library, researching neuroblastomas. Meanwhile, Vonne is busy checking out books from her recent anatomy class. Based on these efforts and Ted’s insights, we come to the conclusion that it’s probably not that bad. Cancer is unlikely to have started in the liver since it’s usually associated with severe hepatitis or chronic alcoholism. It’s also unlikely that cancer started elsewhere and then spread to the liver, “because she’d be presenting more symptoms,” as Ted notes, since the cancer would be fairly advanced at that point.
“Emily seems as healthy as a horse,” Vonne points out in our many phone conversations across the day. She’s eating well, her energy is high, etc., so yeah, metastasized cancer in the liver seems well outside the realm of the probable. The liver scenario is probably going to turn out to be a benign cyst or cysts – not uncommon and easily removed in surgery.
Vonne and I are scared but hopeful. We both fear tomorrow will be a day neither of us can handle. We wonder out loud if we’re doing the right thing trying to have another kid. I mean, what if it turns out to be something really awful?
Friday, July 8th (D-Day)
Vonne and I get up early and take Em to Humana’s Annandale center for the ultrasound. A very nice technician does the job. Emily is very good throughout. Whew! We think, now that we’ve got that scary diagnostic out of the way, the rest of our day should be downhill.
Vonne drops me off at work and drives home with Emily. I immediately start staring at the phone, but this feels nutty. When I spoke with Javedan the day before, he said the results would take hours and that he’d make sure to call me by 4pm so Vonne and I wouldn’t have to sweat out the entire weekend. It’s about 9:30 now. I read the Washington Post for a few minutes, as I’m too nervous to do anything else. Then I start packing my gym bag for a long run, figuring I’ve got hours to kill before Javedan calls.
Just as I approach my office door, bag in hand, the phone rings. It’s Javedan and he sounds very tense. I can feel a black fear start to well up inside me as I listen for the right words over the phone – the words that signal it’s no big deal.
Javedan starts saying all the wrong things: he doesn’t want me to get too scared, he’s made all the necessary arrangements, the best people in the area are going to be involved. I feel myself slumping onto my desk blotter. My face starts to burn as my eyes well up with tears. I fear I’m going to pass out as I fight back the convulsions that start running up my spine. I stop my head’s downward motion with my left arm as I grip the phone ever more tightly with my right. As Javedan continues, I start sliding my left hand over my face, peering between my fingers like a little kid too scared to watch the movie but unable to stop staring. The hot tears stream down my face. I know right then and there that I’ll remember this moment forever.
Javedan says that her right kidney is enormously enlarged. It is so big that it’s displaced the liver out of its usual spot. That’s what was so confusing in the examinations. There seems to be tumors in or on the kidney. There’s no need to assume cancer just yet, he says, but he mentions the term Wilms’ Tumor. Javedan orders me to rush Emily to Georgetown within the hour. The head of pediatric surgery and the head of pediatric oncology are already alerted and waiting. The exploratory surgery will be tomorrow morning.
Javedan’s words just froze me: “It’s already been scheduled.”
The doctors will need to run many tests on Emily by the end of the day, so we must hurry. Javedan knows these people.
“They are the best,” he assures me. “Emily will survive,” he is certain.
“It’s wrong to assume she will die, no matter how bad things get in the next hours and days. Remember that,” he counsels.
Javedan ends with: “I will be in regular contact with you throughout, and I will continue to coordinate Emily’s care. Call your wife this instant, Mr. Barnett. Good luck to you all.”
I take a couple of minutes to control the heaving sobs that grip me the second I put down the receiver. I call Vonne and relay the news. The result is the same for her.
“Come now, Vonne,” I say. “Bring whatever you think we need that you can grab quickly. I’ll be waiting outside.”
Vonne scrambles to pack up a few things, but it’s all so disorienting – like a nightmare coming real before her eyes. This is the very worst-case scenario that we’d discussed in hushed tones – and now it’s all coming true. She quickly hustles Emily out to the car, and speeds off.
Meanwhile, I rush to the company library to Xerox whatever I can find on Wilms’ Tumor. I think to cannibalize my running gear for an outfit more suitable for who-knows-what at the hospital. I have a really hard time thinking through anything logically. Before I bolt, I leave phone messages with my parents, plus Nona Vonne and Granddad Carl in Indiana. Later, waiting outside my office building with a coworker I barely know, I ask the guy for the best way to Georgetown University, which I’ve never visited. I also bum a cigarette off the fellow and smoke it nervously.
Vonne roars up in our Honda Civic, looking determined but scared. I hop in and off the three of us race to Georgetown. Vonne says she can’t believe this is happening.
"She seems so healthy!”
I offer nothing useful in response, other than to repeat Javedan’s assurances like some insurance-policy wording that rules out tragedy.
Vonne wonders out loud about the grim possibility that fate will take away our only child and never allow us another. I can’t think of anything to say. I’m so scared about possibly losing Emily that I can’t even contemplate the idea of another child. I don’t want to go anywhere near that place.
We reach Georgetown University Hospital just after noon, three hours after the ultrasound that we hoped would reveal benign liver cysts. Events are moving faster than any of us can take in, but we’ve got one helluva view.
Emily Vonne Barnett arrives at her premature date with destiny as a two-and-a-half-year-old weighing 29 pounds and standing just under three feet tall. She’s always been big for her age, but all of a sudden she looks awfully small.
As we carry Emily through the hospital’s main entrance, Vonne and I lock eyes for a long instant. No words have to be spoken. We’re both wondering if Emily will ever leave this building alive.
