 
The Emily Updates:

A Year in the Life of a Three-Year-Old Battling Cancer  
(VOLUME I)

By

Thomas P.M. Barnett

With   
Vonne M. Meussling-Barnett

Introduction to eBook series

Seventeen years ago, when Vonne was 33 and Tom was 32, we were suddenly confronted with every parent's worst medical "bolt from the blue": our only child, 30-month-old Emily, was diagnosed with an advanced – meaning metastasized – pediatric cancer. At the time we were living in northern Virginia. Tom worked for a defense think tank in the Washington, DC area and Vonne was a largely stay-at-home mom prepping for a return to her earlier professional career in social work. We were trying – in vain – for our second child.

What followed was the defining crisis of our marriage: an intense 20-month battle to keep our first-born alive. About six months into the struggle, Tom started writing a weekly update on Emily's progress (or lack thereof) for interested parties. Vonne contributed to this blog-like diary, and it was sent out by email, fax and regular mail to over one hundred relatives and friends who spontaneously organized themselves into our family's extended support network. We started this diary because we tired of having to rehash all the details in phone-call after phone-call, but over time we came to view it as something more important – a real-time memoir that would someday prove crucial to Emily's understanding of how she became whom we hoped she would become.

The journey from blog diary to this eBook serial is worth recounting. The original diary ran about 400,000 words, or somewhere in the range of an 800-page book. In the late 1990s, following Emily's successful progression to complete remission, Tom edited the text down to approximately 200,000 words and posted the 45 updates online at a website he created specifically for that purpose. Having received a lot of positive feedback from readers, we sought publication as a regular book, but then fate intervened in the form of a new job for Tom in Rhode Island and the project was – pun intended – shelved.

As a result of that new job, which saw Tom work for the Department of Defense, he later wrote a trilogy of books for G.P. Putnam & Sons on globalization and international security, one of which was a New York Times bestseller (The Pentagon's New Map: War and Peace in the Twentieth Century, 2004). Vonne was his research assistant for all three volumes. But even with that heightened literary profile, we found the path toward traditional publication of the Emily Updates to be problematic. "Cancer stories" are considered a bit of a downer and thus not the "sure thing" that most publishers desire nowadays.

But several things came together in the last couple of years to convince us that now was the time to give publication another try. First – and most obviously – has been the meteoric rise of eBooks themselves. After all, the Emily Updates basically constituted a blog before there was blogs, so eBooks strikes us as an entirely appropriate venue for the material, especially since we're interested in making it easily available and we know how many parents and relatives of patients experiencing medical crises turn to the Internet to locate sources of information, comfort and inspiration in their time of need.

Second was Emily's own matriculation into college, where she now majors in East Asian studies and English. Having made it to adulthood, we felt the time was right for our family – and Emily herself – to share this story with the world.

Our family now hails from the Indianapolis area, and besides 19-year-old Emily – the girl who lived, we boast five additional children: sons Kevin (16) and Jerome (11), our adopted Chinese daughter Vonne Mei (7), and our adopted Ethiopian sisters Metsuwat (4) and Abebu (3). Would we have achieved such a blended clan absent the early experiences of Emily's cancer? We can't ever be sure, even as we suspect it played a significant role in our subsequent decisions to expand our family in this manner. But yes, that's perhaps another reason why we wanted to revisit this tumultuous early family chapter at this time. As Vonne now finally gets back to restarting her professional career after all these years, we wanted to take this moment to remember how we got here – or how the journey truly began.

What you are about to read in this series of eBooks are the original weekly updates as Tom wrote them – with Vonne's continuous inputs – across all of 1995 and into early 1996, a period encompassing the last 14 months of Emily's treatment protocol. Those 45 updates constitute Chapters 3 through 9 in the series: Chapter 3, which concludes with the birth of our second child, in included in this volume; Chapters 4 and 5, which cover the difficult summer of 1995, make up Volume II; Chapters 6 and 7, which chronicle our final push on the chemotherapy, fill out Volume III; and Chapters 8 and 9, which encompass the post-treatment diagnostics – and Make-a-Wish trip to Disney World, constitute Volume IV.

The first two chapters presented in this Volume I are actually recreations of the events surrounding the initial diagnoses (Chapter 1) and the beginning of in-hospital treatment (Chapter 2) in July of 1994. We put these diary-like remembrances together in June of 1995 to mark the one-year anniversary of the diagnosis, and they are based on the voluminous medical records from that time period.

Various stories concerning the period between those initial treatments and the beginning of the updates in January 1995 are covered retroactively across many of the 45 weekly updates.

We haven't made an effort to "improve" the updates from today's perspective. We think it's important to leave them in their raw, written-in-the-heat-of-battle state. Yes, we now claim to be wiser on a host of subjects that arise in this family memoir, but a lot of that wisdom stems directly from these experiences, so we felt it made most sense to share them with you, the reader, in this unaltered format. Simply put, we didn't think we could make them any more honest than they already are – despite the passing of time.

Once all of the updates are published as eBooks, it is our intention to pen a fifth volume wherein Tom, Vonne and Emily look back at these events from today's perspective. At this point, we can't tell you what that effort will entail, because – quite frankly – we first need to undergo the same reliving of events that we now share with you, and we just don't know what that process is going to unearth in each of us.

We do know this: if this series of eBooks helps you better understand an analogous past experience or ongoing crisis in your life, then we will have accomplished what we set out to achieve with this storytelling effort.

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's 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.

Chapter 2

The Past as Prologue (II): Descent

Friday, July 8th around noon (Day 1 in the hospital)

We arrive at Georgetown University Hospital and park the car in the main garage, where it will sit, undisturbed, for over a week. We do the admissions thing: Vonne filling out forms while I perform a quick change of Emily on the floor. It feels obscene to be taking this small and seemingly healthy child into this hospital, knowing only too dimly what nasty experiences await her, wondering if this is the end of her road.

They send us to the regular peds ward on 2 Bles. It's one beat-up looking place, and we're depressed from the start. We wander up to this large central nursing-pool area, announce ourselves, and are shown to a double room, which we share with a pretty but strange young teenage girl who does not speak. Nurses tell us not to talk with her. She's being reprimanded for not eating – apparently a disorder. The girl looks deathly thin – more good vibes.

That afternoon is one long descent into hell. Immediately after we settle in, the chief resident takes a load of info and then tells us all the diagnostics Em must endure before nightfall.

The chest X-ray is only so bad. We head down to radiology in the CCC Building. I go into the X-ray room with Em-Cat, since Vonne plays by the rules that say anything is possible. When that's done, we get the bad news that they can't work us in on the CAT Scan until early evening. Naive as we are, we think they might just do the Scan right then and there, as if no prep is involved. Pissed off, we head back upstairs.

Next come the labs. It seems they have this special room where they take the kids to do the nasty stuff, believing it important to never _attack_ the kid in his or her own bed. Not surprisingly, this little room takes on a horrific quality for the kid, like some torture chamber. Vonne and I fight hard with the residents to let us accompany Em for the lab draws. One female doc is really adamant about keeping us out, saying that most parents can't handle the stress of watching their kids undergo bad stuff. She states flatly, "If you're not willing to hold your kid down as they scream at you to make it stop, you're better off staying out of the way."

Vonne and I are taken aback by this hardline stance. We're still reeling from the shock of Javedan's revelation, and almost don't challenge her. But Vonne recovers quickly enough to shove it right back up this woman's mouth as fast as she dishes it out – with equal disdain. She goes toe-to-toe with the lady to win my attendance. It's a courageous comeback, as Vonne knows she's too distraught to go in herself, and yet fights tooth-and-nail to make sure I will. Otherwise, Em is alone.

It's an important lesson for us: never take no for an answer without probing every possibility, and _never act like you're anything but in control of being the final granter of patient consent to do anything_. Anybody who's got a problem with that can just fuck off!

And yeah, you suddenly realize that you're willing to go nuclear like that – at a moment's notice. You've stepped over into I-don't-give-a-shit-land, and you don't care who notices. It's a bit thrilling, until you remember what is empowering you right at that moment, and then you feel a bit scared and just want to go lie down somewhere.

I don't want to be this person.

Stay focused! Think about that later.

You're always amazed at how much leeway there is in every procedure. After a lifetime of doing what you're told, suddenly everything is a negotiation – because you say so. Everything can be tailored – even if just a tiny bit – to make it easier for your kid. Even more important: never forget that you're the great experts on the patient. _No one knows better._ No one better understands the child or can interpret her reactions better than you. It's an immense power when wielded with confidence and determination. Conversely, avoid the responsibility and you might as well go sit in her room and wait for them to bring her back. It's your call.

Well, it _is_ horrible to be in that claustrophobic room, holding Em down as she screams. She's crying, and I'm trying to hold back the tears as I whisper words of comfort in her ear, stroking her sweat-matted hair. The blood draw is one thing, the Foley catheter quite another. Seems they need a pure specimen and this is the only way they can be absolutely confident with such a young child. They also want a catheter in during her CAT Scan sedation. They end up trying about ten times before finally getting it in. I become very mad near the end and yell at everyone, telling them to either get it in or get somebody else who could. It's a long fifteen minutes.

Afterwards, Vonne takes the lady doc aside and reads her the riot act for putting us through so much crap about being in there with Em, subsequently putting everyone on notice that we're not going to be excluded from any procedure unless there's an absolute medical necessity and it's clearly explained.

Back in her room, Em starts settling down some.

Then we're told we need to get all this barium-contrast liquid in Emily – pronto. This is one long unpleasant effort: pleading and begging and semi-forcing it down her throat over a good two hours, with Ms. Eating Disorder gagging in sympathy on the other side of the room. It's this huge amount too, something like two pop cans in volume. It all seems so cruel and bizarre given her small size, but eventually we get enough down to call it sort of done. Problem is they keep moving the CAT Scan time back – again and again.

Somewhere along the barium-drinking process, about 3pm, I head out for some food at the nearby Leavey Alumni Center. I eat by myself, picking up a salad for Vonne. When I get back to the room, Em is alone and nurses tell me that Vonne is meeting with the doctors in a conference room. Seems they're breaking some news to her. Our second great lesson of the day: as soon as you leave, you'll miss something really important. Everything in the hospital runs on _their_ time, and you'll always guess wrong about when to take breaks.

I go in to find Vonne looking pretty upset and I know immediately that the news is even worse than before. There are about eight people in the room, all staring at Vonne very seriously. Most are residents. The key players are: 1) head of peds surgery, Dr. Gregory Hoy, who will operate tomorrow since he's familiar with the procedure and few surgeons get the chance to perform it; and 2) Dr. Joseph Gootenberg, head of peds onc at the attached Vincent T. Lombardi Cancer Center. We also meet Yvonne Bush, our Lombardi-assigned social worker, for the first time.

Dr. Hoy, who speaks in the detached way of all surgeons, is explaining that they're pretty sure it's Wilms' Tumor. They'll operate early tomorrow, removing her entire right kidney, and insert a permanent catheter into her chest that will run to the edge of her heart. That last bit makes my jaw drop.

Both Vonne and I immediately push for rationales.

"Does it need to be the entire kidney?"

Yes, without a doubt _._ For it to be this huge means that the cancer is advanced. Leaving any of it inside would condemn Emily to a quick death. We're lucky, as it looks like Hoy should be able to leave the left kidney alone completely, otherwise we could be looking at much worse _._

"Do we have to have this catheter thing?"

We're asked to trust them on that one. Months from now it'll seem like a bargain, as hard as that is to imagine right now.

"Months from now?" I exclaim.

"Yes," says Hoy. "You're looking at chemotherapy somewhere between 9 months and two years."

That hits like a ton of bricks. Now I'm so relieved that Vonne isn't pregnant.

So there it is. Five minutes of conversation that makes me double over every time I think about it. So much lost in so little time. The opening bid is her right kidney - no _ifs, ands or buts._ It's lost. There can be no discussion. Emily is deep in the hole. We're only allowed to talk about how much we can save. Some parts are already gone.

Then the bearded and raspy-voiced Gootenberg takes over and explains Wilms' Tumor. It's very rare. They haven't had one here in well over a year. Success rates are high, but they promise nothing for now. It may have spread to her lungs or elsewhere, which would be far worse. It may be the tougher type of Wilms' that is far more resistant to chemo.

"But overall, if you have to get cancer as a kid," says Hoy, "this is the best one to get – as strange as that sounds." No cancer has been more systematically studied than this one – or longer. No treatment protocol is more firmly established. It all depends on its type and spread, and that will takes days to find out.

We're told we should expect to stay here for a long time, but no one dares offer any estimates. They simply don't know. They emphasize that Emily is strong and asymptomatic in every possible way. These are big advantages going in.

Now, I'm using the term "cancer" a lot here in this recollection, but none of the doctors do, preferring to stick with Wilms' Tumor. As Javedan himself says later that day over the phone, "We don't like to use the term cancer here."

Perhaps they don't want to shove it down our throats. Perhaps, as my brother Ted says, docs deplore the term for its imprecision and overly powerful effect on patients and their caregivers. Whatever the reason, at this point I'm still thinking in the back of my head that somehow _this isn't cancer_ – just this Wilms' Tumor thing, this kidney thing, etc. I guess I'm simply in denial here, with my subconscious effort to deny the truth feeding off their tendency to avoid the dreaded C word.

Following the meeting, Yvonne Bush's first entry in Emily's chart offers this initial appraisal of us as a family:

Parents were able to voice concerns, ask appropriate questions during this stressful time. Family expressed concern that Emily was an oddity and that there were more people than necessary coming in to check her out either passively or actively. Family requests the numbers of people and the visits to be kept to necessity.

Truth is, residents and students are wandering into Em's room in this constant stream all afternoon, often in their typical _I-own-this-world-so-stay-the-hell-out-of-my-way_ fashion, with each proceeding to probe her abdomen as they please. Everyone just has to feel the Wilms' Tumor. _Jeez, what an opportunity! And gosh! Why is the kid so freaked out? Is there something wrong with her – or what?_ This naturally sends Em into elevating bouts of hysteria. Eventually, we just starting turning them away, and finally we put a sign on the door that instructs them to stay the hell out.

Another key lesson for the day: we start challenging anyone who wants to do an exam. Either they have a crucial reason relating to the course of her care or they stay away – teaching hospital or no. It's decidedly selfish on our part, but we feel the need to start exercising some control. I start playing bouncer at the door, keeping it constantly closed and the lights down low while Em kills time with videos. Vonne becomes very aggressive in questioning personnel; "standard operating practices" impress her not. Better have a strong rationale to go with that tray of instruments or stay away, mister!

We quickly come to the decision that we're going to actively shape Emily's hospital experience, even if we can't hope to control its major zigzags or ultimate course. Everything is going to be a negotiation conducted through us, or the docs and nurses can just go screw themselves. And woe to anyone who thinks they can cower us with a smart tongue and a high-and mighty demeanor. Those people get a lot of fingers thrust in their faces very quickly, accompanied by equally harsh words.

We are beginning to regain our footing.

In Emily's chart that evening, there are some puzzled entries noting that abdominal exams aren't possible because personnel have been "encouraged not to palpitate." The parents are described as "extremely upset," but "providing much support."

Damn straight.

Back to the room, where we work some more barium down, trying to trick Em into drinking it from every cup we've brought along, and then a few more from the peds galley nearby. Finally a nurse declares it's enough and gives Em a sedating suppository. Off we then go to the little shop of horrors, and this time no one questions letting us both in. They hook up an IV and start hydrating her for the CAT Scan and beyond. During the lengthy process of trying to find a good vein, Emily collapses from all the exertion of fightingShe's unconscious before the sedative hits.

Then down we go to radiology, where Emily wakes up somewhere along the procedure – absolutely terrified – and the nurses end up sedating her even more. Vonne and I pace the hallway just outside the control booth, periodically watching the displays of her little body flash by like so many snapshots of her life. We're both getting the feeling that this'll be a major turning point in our lives. Many decisions and plans and assumptions will be irrevocably altered. Everything will be put on hold for an indefinite period. Everything we say ends with the exclamation, "I dunno!" We just have this feeling that if Emily lives, our lives are going to head down substantially different paths, maybe not so much in terms of middle ground covered, but possibilities deferred, denied, or simply abandoned. In just a few hours, all our decision-making parameters are recast – the paradigm truly shifted.

Later that evening, our first feedback on the scan from a peds resident is that it looks good overall, which we interpret as meaning no metastases. Later still, we hear from Dr. Petro, Hoy's top surgical resident, that this simply isn't true. She speaks of "discrepancies" – possibly nodes in the lungs. Then again, it might just be a mistake, since they're so small. Further evaluation is required.

"Don't get worried just yet," Petro cautions.

Because of the extra sedation, Emily is conked out all evening. Then strangely, around 11 p.m., she suddenly springs to life and starts asking for food. Nice timing, since she's down as NPO (nothing per oral) starting at midnight. So juice and Popsicles it is. Then surprise! Friends who live in the District show up with their kids, somehow talking their way in at this late hour. All of a sudden we have this strangely normal visit at the end of the most bizarre day of our lives, and it's very reassuring. Still another good lesson from the day: enjoy breaks when you can.

That night Vonne sleeps on a cot and I try sleeping in this horrible recliner. I give up about 2 a.m. and climb into bed with Em.

Saturday, July 9th (Day 2)

Vonne and I are up by 5am, but Em sleeps through until eight. Everyone assures us that sedation will be around 8:30 and surgery at nine.

Instead, Em must endure her NPO status until 11:30. It wouldn't be such a big deal normally, but she hasn't had any solid food since Thursday evening – due to the first ultrasound. So she whines and begs for food and anything to drink. We're frantic trying to distract her. We let her use all sorts of markers on her bed, on her legs, on her pillows. Finally the time comes and the orderly shows up with the gurney. Naturally, Em is just dying to hop in, lie down flat, and have this stranger wheel her off to God knows where. We tell him we'll carry her down, as one nice female resident suggested.

So I pick Em up and Vonne steers the IV pole. We head down into the bowels of the CCC Building, where, because we refused the gurney, Vonne and I take turns holding Em in an empty bay for a half-hour. The huge recovery room is virtually empty, with just an older woman on the far side. Em is tired from the lack of food and some light sedation offered earlier.

The anesthesiologist comes in and explains what he'll be giving Emily. Dr. Katarian is an empathetic young fellow who's actually designed the sedation he's using today. He gives us time to talk to Em before giving her the shot.

Then Katarian tells us to say our final good-byes just as the dope starts to envelop Em, who begins giggling uncontrollably. I carry her to the door of the surgical suite – Vonne glued to us both – where I hand her over to the anesthesiologist. It's easily the hardest act either of us has ever committed in our lives: handing over our first-born for a dangerous surgery designed to cut out the source of the cancer spreading rapidly through her body. I can't help but shake from the fear that this is the last time I'll ever hold her, feel her, see her alive.

Later, we are told that if Dr. Hoy doesn't get the kidney membrane sac out in tact – i.e., avoiding spills of the malignant tissue or fluid, then the surgery can just as easily mark her death knell. That's how dangerous the surgery is, despite the straightforward procedure.

When Katarian walks off with Em, Vonne and I just start crumbling inside. We slink off into this empty side room, where we frantically offer a most heartfelt prayer. I'm not sure how well we do, but never will a prayer be offered with more desire or pure love. It's an intense moment neither of us ever forgets.

Then we head upstairs to wait out the 4-to-5 hour operation. Emily went in sometime around noon, so we don't expect to hear anything short of four. Vonne and I sit in the lounge on the 5th floor of the CCC building, where Em will be brought to the PICU, or pediatric intensive-care unit. Around 2:30 Vonne goes to the nearby house of a friend to take a shower and relax a bit.

I cuddle up with the _Washington Post_ , and at about 3:30, the elevator pings and out bounds Hoy with residents Petro and Coletti trailing. With a big smile he announces immediately that all went well and that the news is good – overall.

It went like this: first, they get the Broviac catheter in with no problems and its placement is checked by X-ray. Then they cut her abdomen open from the front, pull out and lay aside her intestines, and get to work on the right kidney. It comes out nicely and there seems to be no cancer spread on the vascular tissues running in and out. However, they harvest some suspicious lymph nodes in the area. Hoy surveys the liver and other kidney and they look good. Can't do much to check the lungs, so they sew everything up, give her some packed red blood cells, and the show is over. Emily comes through it all quite well and is rated in her chart by all involved as clearly resilient – a _rallie_ _r_ , they say.

Then Hoy, perhaps thinking my PhD is in some medical field, launches into an enthusiastic description of the kidney itself. "It's huge," he says. For example, it's six inches long, while the average adult kidney is only about five – and this on a 29-pound kid! The firmness of the mass to the touch was because it grew so large that it stretched the kidney sac to its very limits, like a basketball given too much air. He starts describing the tumors in the kidney when – out of the blue – he asks if I'd care to see it, like it's a professional courtesy or something. I don't hesitate and say, "Yes, definitely." After losing so much so fast, I want to see physical proof of everything they've told us is so necessary. So off we go to pathology.

It's on the elevator down that Hoy relates the danger about spilling kidney sac tissue. It would be like pouring pure cancer into her abdomen. I almost faint from that one, as it spooks me a bit that Hoy is clearly so relieved the surgery is over. Just being that physically close to Emily's death reminds me of standing on the curb at the downtown crosswalk, almost starting to step off, when at the last second you look left and, before you can even see it, you feel the immense bus whooshing past your body. It's that involuntary shudder, humbling to the point of humiliation – _inches away_.

Well, we waltz right into pathology and up to a counter where this young doctor is writing down notes while staring at Emily's kidney laying on a metal tray. It's sliced open and stained with purple dye. A long, bloody carving knife lies casually on the side – _her blood_. Another young doc walks in with a tray of glass slides to be formatted. Some will be Fed Ex'd within hours to the national Wilms' Tumor pathology center in Loma Linda, California, where Dr. Bruce Beckwith stands ready with a battery of tests. He personally reviews every case in the country.

Hoy points out the huge tumor on the bottom lobe (actually, it _is_ the bottom lobe). It looks like fat on a cooked steak. That tumor alone ate up about half of the kidney's mass. The upper lobe is dominated by two smaller tumors. As far as I can tell, only about 10-to-15 percent of real kidney tissue remains. Hoy says much of the spread might have occurred in the days leading up to our trip to Wisconsin; Wilms' Tumor is simply that fast. In his opinion, the depleted kidney would have failed sometime next week, but since the surviving one has already attenuated itself so successfully, it could have gone unnoticed for a while longer.

Next the surgeon points out the little miracle that grew off the bottom of the largest tumor: namely, a satellite tumor about the size of a marble. _That is what I see moving around Emily's bellybutton on 3 July._ This knob tumor grows _exactly_ at the spot where the enlarged kidney presses up against the stomach muscle wall when Em puts her arms above her head and tilts her pelvis. If that satellite tumor grows anywhere else, there's nothing to catch my eye, or to start feeling around.

Hoy says the satellite tumor is very odd. In fact, he's never seen one like that before. When I recount the discovery story, he agrees that this improbable satellite tumor – so perfectly placed – probably saves Emily's life. Otherwise we might not notice the swelling in her abdomen for another couple of weeks or more, and, by then, metastases in other parts of the body could easily have been enough to doom her. In short, she's dead way before her third birthday.

That bus whooshes right past me again.

Just as I try to escape Hoy before he can give any bad news, he emphasizes that Emily's CAT Scan shows something in her lungs. "It's very possible they're metastasized tumors," he warns. The radiologists are continuing to review the films, and will probably reorder data up from the computer files in finer slices _._

Hoy plunges head: "You should be prepared for bad news. It's quite possible we're looking at a Stage-IV diagnosis, or advanced Wilms' spreading above the diaphragm."

I tell myself it could be worse. Stage V would be both kidneys.

Still, where else has it gone?

I try to reach Vonne by phone, but she's already on her way back, so I call my parents. Nona Vonne and Granddad Carl had been in Chicago visiting Vonne's younger brother and his family, and had called their home to check their messages yesterday. Unable to reach us during all the commotion, they linked up with my parents and got the expanding story. My Mom says Vonne and Carl left Chicago early today on a cross-country dash to D.C., calling in for updates during gas stops.

Vonne returns as I hang up and I pass on all the news. We enjoy what we can for the moment. Emily is still alive. Help is on the way. The docs are closing in on a stage diagnosis. We'll start worrying about the lungs later. We feel like Scarlett O'Hara in "Gone with the Wind," except we're running out of fiddle-dee-dee's. There are only so many fears we can shove into tomorrow. But when you start bumping up against crazy, you don't have any choice. Your brain just flat-lines and you say to yourself, "I can't think about that right now."

We're told Em is in recovery and are encouraged to go down if we want. We find her looking pretty beat up, with the recovery nurse gently stroking her hair, talking quietly, and holding a vaporizing oxygen hose up to her mouth. She says Emily is simply amazing and that she could tell Em was a fighter from the second she laid eyes on her. The nurse is strangely adamant about telling us that, and – for whatever reason – it makes us feel instantly better. Em sports a lot of bandaging on her right abdomen and upper chest. She has a nasogastric tube running out her nose, the IV still in her hand, a Foley catheter, a blood pressure wrap on her upper arm, and a telemetry monitor on a finger. She displays small, purple dot-bruises all over from the metal clamps they used to hold her completely still during the operation. Em-Cat is awake and recognizes us immediately. We're soon released and head up to PICU.

It's a quiet night for Emily, as she sleeps until the next morning, awakening now and then out of intense pain. But since she's getting morphine, she never achieves more than a few seconds of blurry-eyed near-consciousness. Vonne and I immediately establish a lights out, curtains closed, door shut and _be-damn-quiet-if-you're-coming-in_ environment. We score some food somewhere along the line.

I start making phone calls to family members around 10pm. During one call, Carl and Vonne rush out of the elevator. They're a welcome sight indeed. Nona Vonne stays up with Emily all night, sitting by her bedside, holding her free hand, issuing a constant stream of comforting words.

It's about midnight when I finally find a minute to sit down. It's weird, but because the docs constantly avoid using the term, it still hasn't hit me yet that Emily has _cancer._ Even though everyone keeps saying that it's obviously Wilms' Tumor and I've had a couple of conversations with my brother Ted about it, somehow it still doesn't ring clear in my head that _EMILY HAS CANCER!_ In fact, I haven't been able to put _Emily_ and _cancer_ together in the same sentence. They're like opposing magnets in my mouth; they just keep sliding past one another according to some invisible force.

Then, as I sit exhausted in the darkness of Emily's PICU room, listening to the whirls and beeps of her monitoring equipment, I pull out the packet of reading materials that the social worker gave us yesterday. One book catches my eye. I stare in disbelief at the title on the cover: _So Your Child Has Cancer . ._ ..

Speaking to no one in particular, I mutter softly, "Thank you for finally saying what it really is."

I wearily glance over to Emily's frail form lying so awkwardly on that big bed. She looks like a once-expensive doll that's been stripped naked and tossed on some medical garbage heap, sporting little dignity save for the washcloth draped over her groin. With her arms pinned out straight and a bloody wound just under her right rib cage, I can't help thinking of Christ on the cross. Trying to blink back the image of her death, I turn my head away just as the _bus's headlights explode through the door. While the massive vehicle crashes past Emily's bed, I manage to raise myself up off the chair just in time to receive its impact. As it rockets my body right through the building's outer brick wall and into the muggy night air, I glimpse at stars racing by in a smeared streak – our universe collapsing. And when that monster slams me into the brick-paved courtyard five stories below, I just let that fucker roll right over me, surrendering whatever strength I still possess._

Our firstborn has cancer. What can we possibly do now?

Sunday, July 10th (Day 3)

Sunday starts out very quietly. We're all a bit puffed up about Em's amazing effort at getting through all that surgery, especially coming on the heels of all those nasty diagnostics. All vital signs point to our discharge from PICU by the end of the day, and that alone is cause for rejoicing, as all the doctors and nurses beamingly confide.

"She's one great fighter all right," says one PICU nurse.

Still, to celebrate much at this point would be like the D-Day soldiers laughing it up big-time on Normandy Beach that evening. Sure, it's great to still be alive, surviving the deadly assault, but so much danger lies ahead. Conflicting interpretations of the CAT Scan still abound: are those dark areas in the lungs metastasized Wilms' Tumor? Bits of collapsed lung? Old scars? Nobody knows.

The question of which stage diagnosis Emily receives is crucial because there's a wide variance in treatment protocols and, naturally, a significant variance in historical odds. If the Wilms' is seen as remaining solely within her right kidney sack, we're talking Stage II, and that means chemo for less than a year with no radiation. If the Wilms' has escaped the kidney sack and moved into surrounding tissue, then we're talking Stage III, or anywhere from a year to 15 months of chemo with abdominal radiation on the side where the kidney was removed. If the dark spots in the lungs are metastasized Wilms', then it's Stage IV, with the same Stage III treatment regimen plus radiation to both lungs.

Now, Hoy suspects some of the abdominal lymph nodes are infiltrated, so it seems we're already in Stage-III territory. Therefore, the question of the lung spots determines how much radiation she'll receive: either just one side of the abdomen or her entire chest as well. The difference is huge, because when you radiate the lungs, you nail the heart too.

Of course, there's still the formal pathology, the results of which remains days away. If the histology (tissue structure) is unfavorable – otherwise known as _anaplastic_ (the worst type, where the cells display an almost devolved lack of differentiation) – then chances are she'll die, as success rates with that type are dramatically lower.

So only so much pride can be purchased by Emily's courageous performance to date. Your head is just too crowded with the guilt of discovery and fear of the future to let much else in.

On a practical level, much of our interaction with staff concerns Em's pain medication and the removal of various tubes running into her. Emily clearly wants the Foley catheter out pronto, as she asks to have her diaper put back on as soon as she is coherent enough to realize her situation. It quickly approaches near-constant pleading on her part, as the catheter is the number one limit on her mobility in bed. Naturally, she hates the nasogastric tube as well, but the diaper remains her most persistent demand through that first recovery day. Both tubes are removed by early afternoon, but there's a lesson to be had in this process.

That lesson is: _ask, ask, and ask again_. The decision to remove such painfully intrusive tubes cannot be made by floor nurses. If you choose to wait on the good doctor's grand appearance, well, you can wait all day and deep into the night – especially on a Sunday. Answer? Keep bugging the nurses and floor residents until they, in turn, bug the chief nurse and chief resident. Then you move your nagging up a notch until the chief nurse and chief resident start calling the surgical residents. When they appear, start on their case immediately. If they hem and haw about needing the surgeon's permission, then stomp off toward the unit secretary, demanding loudly that the surgeon be paged immediately. At that point the resident will probably stop you and say they'll get an answer within an hour. Then you simply start the ladder-process all over again about checking on the surgeon's response. Point being, the hours of extra agony that you slice off by pushing this decision make a huge difference in your child's comfort and thus recovery. Em brightens up considerably with diaper on and nose tube out.

We're not pushing the envelope of medical _necessity_ – but of medical _bureaucracy_. In doing so, we're simply – and smartly – building on our growing reputation as parents who aggressively co-manage their child's care. Think of Shirley MacLaine's mother character in "Terms of Endearment." Co-managing is not an exaggeration, as there's lots of wiggle room in any hospital procedure or service. The big thing is not being afraid to ask. Moreover, it feels good. Our aggressive advocacy mitigates our grief of a past-life lost, the guilt of the current situation still unfolding, and the fear of a highly uncertain future.

Having increased Emily's fragile comfort level, things go wrong on another level shortly after noon. The morphine they're giving her to handle the intense pain is producing a nasty side effect. Every so often, after the narcotic sends Em off to the lala-land of light sleep, she's abruptly awakened with a terrifying startle that literally lifts her off the bed –"Exorcist"-style. It's scary to watch: a body-slamming version of the startle most of us know from light sleep. This rendition, however, is a nasty, jerk-contraction of every muscle in her body. Her head pulls forward off the pillow, arms and legs shoot out in all directions, and her torso lifts off the mattress for a split-second. All this lightning-flash movement sends Em into spasms of pain, given all her sutures. So she awakens, starts weeping plaintively, and the morphine submerges her once again just below the waterline of consciousness. Then _POP!_ It happens again.

God that child cries out so, the pain as much emotional as physical. It seems like this cruel trick the morphine's playing on her.

Rest little girl, I'll take care of you. There, there now . . . SLAP! Got you, didn't I? That'll teach you for dropping off! Now, now, I'm sorry. Please, little girl, go back to sleep. Just relax and let me do all the work. Yes, little darling, sleep.

Seeing Emily pop off that bed again and again sends Vonne and I into utter despair. The nurses' first answer is to pump up the volume, saying they're loath to switch meds since Hoy dictated morphine, and he's considered a near-god by nurses and residents alike. His preferences are not easily challenged via the staff, although he seems quite flexible with us – the parents. The weird thing is, Hoy is big on bringing the patient back up from surgery ASAP, which makes everyone's deference to this numbing morphine regime all the more strange in our eyes.

Finally around 2pm, after seeing Em lift off the bed once again as though some invisible force is tossing her around, Vonne and I start taking turns lying in bed and physically pinning her down so the startles don't shake her so painfully. It works to a certain extent, and she calms down some. But this is a Band-Aid solution for one major-league wound. In short, it sucks.

It's at one point when I'm was lying next to Em that good family friend Vickie Sands appears with daughter Michaela to visit and bring us stuff from home. Vickie and her husband Jeff, a colleague of mine, are taking care of our house while we're stuck here. Four-year-old Michaela looks pretty scared, but she puts on a brave face for Emily, who's still weeping from the last jerk-around. I'm lying next to Em, covering as much of her body as possible with my free arm and leg and kissing her head – and feeling awfully pathetic in front of these close friends. It's simply being confronted with the yawning gap that's so instantaneously opened up between _them and us_. Only hours before we'd shared the same lives.

Grateful as I am for the visit, it leaves me intensely sad and angry. Vickie drives Michaela back home on this beautiful summer day, the kind when we often get together as families and hit some local park. Michaela goes home to her toys, her little brother Daniel, and her own bed. Meanwhile Em and I lie together crying, holding each other tightly, and hoping the next spasm stays away just a couple minutes more. All the time we're waiting to find out if this effort is just a cruel hoax and she'll die soon anyway. I feel so angry with this stunning turn of events, this seemingly capricious judgment from on high that sentences us to this fate and leaves others – standing just to our right and left – to walk away untouched, that I'm ready to denounce, desecrate and destroy everything anyone holds dear in this life. My soul is so black right now that I feel I understand every evil act ever committed. More than that, _I covet them_.

Imagine pissing me off this afternoon.

Later in the day we're discharged from PICU and we simply wheel Emily's bed past the main elevators and into the so-called Step-Down unit known as C53.

The morphine spasms worsen. Everyone is talking about it, but no one is doing anything to stop them. After a while we press them about alternatives _._ I can't help wondering: What's the goddamned Rubicon between morphine and the rest of the pharmacological universe anyway! Finally, a nice nurse, the aptly named Mary Paine, mentions Toradol. It's a non-narcotic with few side effects and it often works wonders without doping the patient too much. _Good God!_ This sounds just like what Hoy would want!

We continue badgering the staff, verbally beating up floor residents and working our way up to the chief resident – one talented but snotty lady who acts like parents are the biggest pain in the ass any doc can imagine. She wants all sorts of vitals taken – over and over again. This triggers the great blood pressure fiasco.

Hospitals have these glorious devices that take blood pressure automatically every few minutes. They are not built for little kids, however, who – besides often simply being too small – tend to squirm about and throw the readings off. Well, they strap one on Em even though we tell them that it frightens her and they're likely to get falsely high readings. Chief resident Kiss-My-Ass says it's imperative to get a correct reading _,_ "So keep trying the machine until we get one!" Pretty soon Em is hysterical, so her blood pressure shoots up.

Then the room fills up with doctors, residents, and nurses – everyone but Waldo. Everyone is babbling about Em's dangerously high blood pressure: "She seems so spooked by people! Maybe we need another reading! If we can't get it down we'll need to take drastic action!"

Then we go ballistic. I start into the chief resident. Nona Vonne is yelling that there are too many people in the room, getting so mad that Granddad Carl jerks her outside before she hits someone. Vonne rips off the blood-pressure cuff. Finally, Kiss-My-Ass relents.

[Cut to exterior shot of hospital room: doctors and nurses exit _en masse_ , the chief resident mumbling to herself about "asshole parents." Seconds later the blood-pressure machine comes spinning out. The door slams. The lights inside go out. All is quiet. Cue the tinkling piano score.]

They never again use the blood-pressure machine on Emily during our hospital stay. From that point on we carry with us a manual version with an extra-small cuff. Anyone trying to wheel in the machine is stopped at the door and told, "No thanks."

We have many run-ins with the chief res until she realizes we aren't going to back down whenever she pulls out her _I've-got-my-ship-to-run_ crap. Her chart notes about us are a masterpiece of understatement: "Parents seem to feel more in control when given sufficient information regarding procedures and policies."

Yeah. Uh-uh.

Well, push comes to shove and we finally get hold of Hoy's No. 1 surgical resident, the inimitable Dr. Petro. She's obviously talented, but her personal warmth registers just north of zero degrees Kelvin. She makes Kiss-My-Ass seem downright bubbly in comparison. She thinks Emily's blood pressure is due to pain, not the morphine. Just like that, she comes to this rapid-fire conclusion.

Apparently our detailed and highly graphic descriptions of the spastic tremors come off as so much hysterical parenting. She just frowns at us. "Never heard of it," Petro says. "It's not possible." Hoy specified morphine, so how can we expect his right-hand disciple to call her rabbi wrong _. Get real, hysterical parents! But okay_ , she announces with a withering look, _I'll disturb the great man!_

Petro comes back about an hour later. Seems Hoy approves the switch to Toradol in nothing flat. His only concern is that Toradol reduces white counts if used over a substantial period, but that's not likely here _. "_ So get on with it!" he says.

It's now 10pm. We've been begging for this change for eight hours. Nurse Mary Paine gives Em a "loading," or double dose, of Toradol.

A little less than two hours later Emily is sitting up in bed, smiling, talking and playing with toys. She's asking for stuff to drink and eat, but she's still Nothing Per Oral. Anyway, the transformation is beyond stunning. One hour she's writhing in pain and delirious, triggering the whole blood pressure fiasco with the cast of thousands. The next, she's relaxed and calm. We watch videos and play with some toy animals that Nona Vonne bought. Life is back to some semblance of normality. Everyone is being nice to one another again. The chief resident and I engage in pleasant small talk. I tell her I'll call her "Dr. Henry" if she'll stop calling me "Dad." Residents love to hear the title.

We finally talk Em-Cat into sleep around 1am. Nona and Carl head off to the Leavey Alumni Center, where they've got a room. We have a cot brought for Vonne and a recliner for me. We're reminded that only one parent can stay, but we just smile and thank people profusely for that timely insight into hospital procedure. Then we escort them to the door and shut it behind them.

As Emily drifts off to sleep, the spasms return. There's still a lot of morphine in her system. We lay her on her stomach and surround her with pillows. Then I sleep next to her with my arm and leg pinning her down. This way, when she's startled, she simply reflexes into the pillows, feels the reassuring weight of my limbs, and drifts back to sleep without the crying jag. About 4am the jerking finally stops, whereupon Em pointedly asks me to leave _her_ bed.

I try the recliner for about five minutes and then sneak onto the empty bed on the other side of our double room. The night nurse bounces me at 6am.

"Hospital rules, you know."

Monday, July 11th (Day 4)

Things settle down a lot this morning. We make our peace with the nursing and resident staffs. They understand us now, we understand them, and mutual respect emerges amidst the shared experiences. We know they're doing great by Em. We never doubt that. Conversely, they come to appreciate what assets we are in Emily's care. She's one kid they never have to worry about. Someone is always with her, meeting her needs, voicing her requests, sheltering her from the din. Once both sides get used to the other's style and requirements, things smooth out significantly.

The blood draw this morning shows Em came through surgery just fine. She's holding her weight, despite losing that two-pound kidney. Her chart notes describe her recovery with code phrases like "MAE" [moves around easily] and "OOB [out of bed] ambulatory in the hall with parents without difficulty." She's still forbidden to eat or drink through the morning, but receives permission for sips of liquids in the afternoon. It's the first thing to pass her lips since Friday night. One nurse's notes describe Em as "playful, somewhat cheerful, coloring in bed but became fretful when approached." She also notes that it's hard to listen for bowel sounds in her abdomen because Emily cries when she tries with the stethoscope.

Before lunch Dr. Gootenberg stops by with his residents: the charming Victor Alidow, who falls so hard for Emily that he brings her a teddy bear; and Elizabeth Sutton, also a sweetheart. Perhaps residents just get softer when they rotate to peds onc. Anyway, we prefer them to the stone-faced, laconic surgical crew.

Gootenberg assumes that the lung spots found on the CAT Scan are metastasized Wilms' Tumor. He quickly outlines possible biopsy routes, stressing that the ultimate choice resides with the surgeon Hoy. Feasibility is determined not just by ease of access, but also by the time crunch of starting the treatment protocol – i.e., radiation and chemotherapy. For example, the simplest method is by needle insertion, but the odds of getting enough material – and thus conclusive data – are only so-so. More invasive methods carry other risks, of course. But the bottom line is this: the protocol calls for chemo within ten days of kidney removal. Historical studies show that, once you go past ten days, survival rates drop significantly. _We're already on the clock._

Gootenberg talks at length about the National Wilms' Tumor Study Group, which was established in the late 1940s. The treatment protocol was formalized in 1969 – one of the first for cancer. Since then, the NWTS (known affectionately as the _Nitwits_ – those wacky oncologists!) has been run by a national board that actively oversees most Wilms' cases in the country (about three out of every four). The NWTS is currently in its fifth seven-year study of the treatment protocol, the disease itself, and long-term survivorship.

As Gootenberg explains, Emily is in a rather unusual situation. Her lung nodes are not picked up on the chest X-ray, but are barely visible on the CAT Scan. Now, the Nitwits know that, in the past – before the advent of the more powerful CAT Scans, they must have treated a few kids as Stage-III cases (no spread above diaphragm) when they were really threshold Stage-IV (spreading to lungs). So they're sort of undecided, protocol-wise, regarding the value-added of radiation to the lungs when patients are right on this diagnostic borderline. Why? You don't radiate some kid's heart and lungs on a whim; the payoff has damn well gotta be there. In the fourth NWTS study, approximately 40 kids fell into this in-between category, and when left to the preferences of their attending oncologists, half went Stage III and half went Stage IV. Of the twenty in each group, one died in Stage IV and two died in Stage III – not a significant difference. So the issue of the treatment protocol is still up in the air as far as the Nitwits are concerned.

Gootenberg's attitude: "We have one good swing at the bat. If we kill it right away, Em has probably got it beat – for good. To go light on treatment risks striking out completely. Better to hit it out of the park with the bigger bat."

To paraphrase F. Scott Fitzgerald _, there are few successful second acts with Wilms' Tumor_. Relapses trigger much harsher protocols featuring survival rates far south of 50 percent. Having stated his philosophy, Gootenberg stresses that it's too early to make this decision. We're still waiting on the pathology.

Lombardi peds-onc art therapist Tracy Councill stops by. We first met Tracy on Friday, when she gave Em some markers to kill time before the surgery. Tracy promises to keep Emily supplied with crayons, markers, and Play-Doh throughout her time in the hospital. Today she also brings over the sand table from the clinic for Emily to play in – right off the side of her bed. Em-Cat enjoys it so much that, by day's end, Nona is already talking about having Granddad Carl build one. Tracy says she'll alternative with another lady, named Lynn, during the weekdays, and judging by this charming woman's way with Emily, both Vonne and I can see what an important role these two artists will play in the days ahead. Tracy's visit is a nifty release for us all. With Lombardi, we sense a larger support structure at work. These people operate off a bigger picture, and we need anchor points right now.

Em gains strength as the day progresses. That night, around nine, she ventures into the playroom down the hall. Less that 48 hours after having her kidney removed, Emily climbs up the Little Tikes slide and down she goes before we can react! Later that evening she has her last Toradol. From that point on, it's just Tylenol for Emily. Both doctors and nurses are simply amazed at her recovery and ability to handle pain. "Resilient" doesn't come close to describing the feat.

That night Vonne sleeps on the cot in the room, while I try the parent's lounge. I find it too spooky and sneak into bed with Emily, who lets me stay all night this time. Granddad and Nona stay at the Leavey Center again.

Tuesday, July 12th (Day 5)

Nona Vonne and Granddad Carl leave this morning, and we're sorry to see them go. They had gone to such great lengths (pun intended) to be at our side during the worst hours after surgery, showering us with attention and support every minute. It's hard to imagine what it all would have been like if they hadn't been here for us.

Gootenberg sweeps in with important news: after re-evaluating the CAT Scan, the radiologist identifies the lung masses as suggesting Wilms' metastases. He goes on to say that he wants an oblique chest X-ray done to get a better look at the nodes, but Vonne and I stop listening at this point, so stunned are we by the bad news. So far, every time we've come to some fork in the road, we get shoved down the dark path. Gootenberg's request for a nuclear bone-scan of Em's entire body goes in one ear and out the other. Our throughput channels are simply overwhelmed at this point.

A bit later we have our first long talk with Yvonne Bush, our Lombardi-assigned social worker. She enters a fairly detailed description of our backgrounds in Emily's chart, as well as a listing of our concerns. As she notes, "Both parents have mentioned that this is a huge change in their expectations and plans. They have voiced that this will take some time to adjust to." She writes that we're relieved when Gootenberg tells us how hard it is to detect this cancer, because we feel guilty for not picking it up earlier. She ends with, "Family seems very capable in working with complex systems and has excellent self-awareness, insight, and ability to problem-solve." Any wonder why we like Yvonne from the start?

Vonne's brother Todd shows up magically for lunch, juggling his business travel schedule to give him a few hours of layover at Dulles. After spending some time with his niece, he whisks Vonne off for a well-deserved lunch, and it does wonders. Todd is Vonne's number-one comrade from childhood, and his short stay picks her up tremendously. Coming from the real world, he's a welcome tonic for us all.

Emily is placed on a regular diet this afternoon, meaning her first solid food since Thursday evening. It makes her feel a whole lot better.

I take Emily down for the chest X-ray in the early afternoon. It's a real jerk-around. First we have to hustle downstairs with no warning, and then radiology says they're not expecting us. I unleash my tongue big-time and they say they'll work us in pronto. It's a tough shoot, as all the big, noisy machinery frightens Em. For this thirty-month-old tyke, no day passes without some new scary adventure.

Donna Oishi, the head peds onc nurse at Lombardi, stops by and shows Vonne and I how to change Emily's Broviac catheter bandaging. Like all the peds onc nurses, Donna exudes a confident and upbeat personality. She breezes in and out like she owns the place, oozing can-do attitude. We find ourselves being really impressed, but not sure why. I guess the peds onc nurses represent this tough-but-hopeful future to us. They sweep into the room like angels-of-our-better-future, filling us up with confident thoughts about ourselves and the difficult battles ahead, and then sweep right out again – Mary Poppins-like. Maybe we're just imagining their effect, or maybe they're adept at giving families what they need at time like this. Whatever the reason, we desperately want the peds onc nurses to be special. We feel Emily's future is largely in their hands.

Emily ends the day with only the telemetry sensor still on her finger. When we leave for a walk, we simply stuff the battery-powered transmitter into the back of her diaper.

At bedtime, a friend from the District treats us to some carryout pizza. Vonne stays at his home for the evening, while I spend the night on the cot.

Wednesday, July 13th (Day 6)

Before Vonne gets in, Gootenberg stops by with bad news: the lymph nodes taken from Em's right abdomen are positive. We're now definitely in Stage III or higher. The histology, or structure of the cancer cells, is still in process.

Gootenberg also reveals his discussions with the NWTS council. They decide Em should be treated as "CT-mets only," meaning the metastases were detected only by the CAT Scan (also known as Computed Topography) and not by X-ray. This is such an unusual case that the council allows Gootenberg to treat at his discretion, as any study data Emily provides will be valuable. Gootenberg sees that as a green light to pursue Stage-IV treatment, something we're still contemplating. To calm our fears, he promises to employ the slowest chemo pace, spreading it over 65 weeks. There'll be absolutely no experimentation in dose size or frequency. The only thing standing in Gootenberg's way is the council's demand that the lung nodes be positively identified as Wilms', meaning a biopsy. Once done, he has the ruling body's blessing to go Stage IV, adding whole-lung radiation. Gootenberg says he's talking with Hoy about the needle-insertion biopsy versus a thoracotomy (cutting her lung open).

Vonne shows up late morning and I give her the news. It's almost immediately overtaken by even bigger news from Hoy: the protocol's time crunch forces him to go with a thoracotomy. He needs to be completely sure he can get a sample sufficient for biopsy, and opening her up is the only way. He'll operate tomorrow afternoon. The tissue will then be rushed to the national lab in California for analysis.

We're stunned by the news, even with the minimal warnings. Emily is just getting over the nephrectomy and they want to open her back up in just over 24 hours. Hoy warns that the thoracotomy will entail a significantly more painful and difficult recovery, because he'll have to spread the rib cage quite a bit to access the tumors _. "_ Be prepared for a difficult few days," he says. Hoy hopes she'll recover enough over the weekend so they can start the chemotherapy on Monday – Day 9 since the kidney came out. That gives us one day of slack according to the protocol.

Just earlier, Vonne had suggested I take a friend up on her offer of a ride back to the house this afternoon to check on things. Although I start panicking somewhat after Hoy's bombshell, Vonne talks me into going anyway. She'll take care of Em and I need the break. I've been trying to stand watch as much as possible, knowing Vonne faces hard weeks ahead, when she'll be home alone with Em and I'll be at work. Still, I haven't been outside the hospital complex in five days, so I'm getting a bit stir crazy. I'm just scared I'll miss something big if I go.

An hour later I'm slouched in the backseat of a station wagon, watching the scenery zoom by as we head south on I-395. I'm full of dread. I don't want to go back to that house alone, without my wife and without our child. It's not something I want to experience. I've heard from nurses about divorce rates following a child's death or catastrophic illness – as in, _three-out-of-four marriages_. I can't help wondering if this is the beginning of the end of our family.

As we drive up the hill at Grandstaff Court, the front-yard tree comes into view. No longer a brilliant fiery red, the 25-foot pear tree is now a slumping blackened blob. It had succumbed completely during the five days since we left. Succumbed to what, I don't know, but the sight of it once again leaves me feeling somehow revealed: _Does everyone know?_ Whereas the red leaves had seemed a bizarre omen, the shrunken black ones seem more the metaphor: this young, seemingly healthy tree, which in the past only worried us in terms of growing too tall, is now rapidly approaching death – struck down in its prime by a deadly, fast-moving disease.

Passing by the dark shadow that was once our shade tree, I go into the house only to find Vickie Sands there, with Michaela and two-year-old son Daniel. Vickie had stopped by to do some maintenance and take care of our cat, Rosa. I survey the scene and find all in order, then harvest some vegetables from the garden and give them to Vickie to take home. I next clean out the fridge, tossing a lot of food and giving some to Vickie, who's soon on her way home with the kids.

Within a half-hour I run out of busy things to do, so I sit in the kitchen and sip some tea. Then Vonne calls. As soon as she had settled in with Em to spend a quiet afternoon watching videos, word came that Em will be receiving chloral hydrate in a few minutes to sedate her for this afternoon's lengthy diagnostic procedure – the nuclear bone scan Gootenberg mentioned on Monday. It's scheduled to begin within the hour. A nurse comes in with the sedative:

Oh, didn't the doctors make that clear to you? No? Oh well, this is to see if the Wilms' Tumor cancer has spread to any bones throughout her body. Oh, don't worry too much. The test doesn't hurt her. She just has to lie absolutely still in a pitch-black room for about a half-hour while they track a slightly radioactive element through her body, which they'll inject down there. Someone will probably be in there with her, you know, to keep her from getting too scared or anything . . . excuse me? What are the odds? Oh I don't know. You'd have to talk to your doctor about that. I only know that it's scheduled, so I guess they must think there's a chance. What would that mean? Oh . . . [frowns and turns away to head to the door] I don't feel comfortable speaking on that. [Turns at the door] You need to talk to her oncologist about that. I really shouldn't say anything more. Just keep her still. Someone will be here in a little while.

The bone scan turns out to be the scariest diagnostic of our lengthy hospital stay. Of course, the docs hope not to find anything, but this is clearly an attempt to discern the limits of the cancer's spread. If it leap-frogged into the lungs, then obviously it's on the march. Wilms' is the _blitzkrieg_ of pediatric cancers. It gets measured in days.

One syringe later and Vonne's staring at another magical mystery tour of _Cancerworld_. She's just been given a nifty heads-up: either we'll celebrate another bullet dodged, or . . . sometime in the next couple of hours we'll receive news that – if we're smart enough and attentive enough to realize it – predestines our firstborn's untimely death. _Boom! The other shoe falls._

When Vonne passes the news back to me at home, I immediately want to call a cab and rush to Georgetown. No, she'll take care of it, just as she took care of our Broviac-catheter dressing change this morning and the surprise chest ultrasound after lunch (one last effort to pinpoint the lung nodes). The procedure will already be in progress no matter how fast I get back, and anyway, Em is already doped. "Just come as soon as you can arrange a ride with someone," Vonne says wearily just before hanging up.

Naturally, I'm one antsy dad sitting alone in the house. After a bit I call my Mom in Wisconsin. She has tickets to arrive here at National Airport late tomorrow, just after Em's second surgery. I pass on the news to her, as well as the surprise of the bone scan. I'm so tense and testy that the conversation soon degenerates to the point where Mom is asking whether it's still a good idea to come. She's clearly tense about coming. Mom has had her share of scary scenes with kids in hospitals, losing two in the process – both at very early ages. I know it's difficult for her to come, but far harder to stay away. She already sounds tired, almost as if she dreads one more leap into the fire. But she's a good person for me to talk to at this tough moment. She has known plenty of close escapes, and understands what it's like to lose the whole ballgame. It helps a lot to know she'll soon be here.

When I get back to Georgetown, I dash to the room, find it empty, and then track down Vonne and Em in nuclear medicine in the basement of the CCC Building. I run up to find Vonne standing just outside these heavy, drawn curtains. I peer into the pitch-black room as Vonne explains that a nurse is in there with Em, keeping her from freaking out as she lies semi-unconscious on a gurney. I can't make out a thing. Technicians and doctors are scurrying about with all these X-rays, apparently checking the shots as they print out to see if any bone needs extra work. We imagine the rush anticipates tomorrow's surgery – namely, getting all the information in hand so Hoy can perform any extra cutting while he has her on the table. We're five days into this and the docs still don't know how much they'll end up carving out of her body before rushing her into chemo and radiation.

Vonne says they'll give a quick-look answer on the bone scan. A radiologist comes by and confirms that she'll have an answer within the next half-hour.

What a wait that is: Em isolated in the blackness behind the curtains, Vonne and I staring at each other in a basement hallway lit up by the greenish-blue glow of X-ray exam panels, the air filled with the chemical smells of radiology.

"Just a few more minutes please," the smiling radiologist says. She knows it's tough for us. She has read Em's chart and knows what we're looking for: either a stay of execution or a death sentence. Of course there are always in-betweens, but try telling us that after all the diagnostics of the past five days confirm our worse fears and then extend them. Every news flash we've received up to this point has been bad – _odds-crushing, one-in-a-million bad_. Either the radiologists walk up to us in the next few minutes and tell us they've found a clear floor to this whole descent, or they tell us they've found the next trap door – dropping us down to the next circle of hell.

And as we stand there, numb with anticipation, I remember that most docs only give a clear answer if it's good. A bad outcome is usually fudged verbally; they don't want to say it outright. I find myself practicing winces on my face – just waiting for the first pause, the first hesitation in their voices, the first oblique wording. This waiting is about as scary as it gets.

And then it's over in an instant. Doors fly open and two smiling radiologists stride out, making a beeline toward us _. "_ She looks clean!" are the first words right out of their mouths – a preemptive strike to wipe out our fears while they're still powering up on their launch pads. "We know what you're waiting for and we wanted to tell you right away. Of course, this is only our preliminary report and a more detailed one will follow. But we can say she looks clean – no abnormalities."

And then the curtain parts, Emily is wheeled out into the hallway, and suddenly we're this family again – all hugs and kisses and _"_ How brave you were!" We return to our room, our flagging courage still in tact. Our day nurse, the wonderful Mary Paine, decides to finally take the telemetry sensor off Em's finger. She wants us to have as free and easy a night as possible. We lean back in chairs, stretch out on cots and beds, and all breathe deeply. The bone scan feels like rock bottom; we're now on our way up. It just has to be. All we need now is the pathology report. If the histology is favorable, Em's chances remain in the 4-out-of-5 range. We have no illusions about the tomorrow's surgery. We know it's Wilms' in both lungs. Still, we feel good. We just broke our diagnostic losing streak. Now it's time to relax.

And then the Nurse From Hell strides mightily into the room. They call her Lee, and she's the towering, hefty, Teutonic nightmare right out of a Wagner opera.

The story is this: while Em is at the bone scan, nurses move a crib into our room's other stall. In goes this cute little Asian toddler with serious gastrointestinal problems (don't ask). With him comes his nice mother. Well, we're so ecstatic with the bone scan results that we welcome them with open arms, making sure they have all the room they need. I scrounge around and find mom a nice recliner. Vonne offers her food and turns the TV for her son's exclusive use, as Em is using another TV that comes with attached VCR. We talk with the mother about her kid's situation, giving her all sorts of inside info on how to do things here. We're just so damn eager to please – to help somebody else for a moment.

And then in strides Lee. She looks at our stuff and declares it all too disgusting for words, predicting we'll have bugs by the end of the week! She starts pulling our stuff from our wall closet so she can remove a shelf and put it in our neighbor's closet. She can go anywhere for more shelves, but decides she must have ours so we have absolutely the same number between us. She shoves her way around, poking into bags, acting like we're hillbillies too cheap for a hotel. She wrinkles her nose constantly like we smell bad. She scrubs the sink (which we did every day), going on about how things will improve with a Chinese family in the room, because _"_ they're so nice and clean!" She has us moving stuff all over the place – despite our exhaustion, and warns that we've "got to get used to the idea of being nice to someone else and not taking advantage of everyone all the time."

We're so shocked by her tone that we do as told. Lee is going out of her way to make us feel guilty, like we're some pigs who think only of ourselves. More than that, she insinuates we're racists who think we're somehow better than our Asian roommates.

It is 9pm and Lee is declaring lights out at 10 – with no arguments. Emily is just starting to rouse after the dope from the bone scan and it's clear she'll be up for several hours – easily. But Lee isn't listening. She wants the room dark within the hour. I explain that Em won't sleep without several lights on – to no avail. Our Chinese neighbor assures Lee that her child won't be bothered by the lights, so embarrassed is she by all of Lee's bullying. Lee keeps barking that she runs things her way and that we "better get used to it."

Vonne had planned to stay with Em that night, but now she's so spitting mad that I worry she'll punch Lee in the face the next time she opens her mouth. As much as I'm intrigued by the idea of seeing Vonne's old karate training kick in (pun intended), I don't want this pre-surgery night to go badly. So I quickly talk her into going to a friend's house instead. Lee and I have a few testy stand-offs through the night, but I choose the route of pretending never to hear exactly what she says and then doing as I please. It's more than easy to work out suitable arrangements with our roommate's mom, who's horrified at how Lee's treating us. I am too, but I know Vonne. She'll be back tomorrow morning gunning for this nurse's hide. Lee, I surmise, probably does this to people on a regular basis. Once Vonne gets hold of her supervisors, Lee's professional life will take a turn for the worse. It's a comforting thought as I lay down to sleep sometime around 2am.

Thursday, July 14th (Day 7)

Emily receives a clear liquids breakfast, then switches to NPO (Nothing Per Oral). Surgery is scheduled for late afternoon – the true sign of last-minute scheduling. Every doctor imaginable is in that morning to check her out, but everything seems on track.

The ultrasound did help to pinpoint the lung tumors: three in the right lung and two in the left. The two largest are both in the left, so Hoy decides it's best to remove those for biopsy purposes. By definition, they're the most advanced. Plus, this way the biggest ones are gone even before the inevitable radiation, leaving it to shrink and kill the three smallest tumors. This is important since, if the radiation only kills the tumors but does not make them totally disappear, historical Wilms' data suggests we'll need to cut them out later, just to be sure. By getting the biggest ones out of the way, Hoy hopes to avoid another nasty thoracotomy.

Gootenberg's chart notes that day make it clear: this surgery determines whether Emily is treated as Stage III or IV. She has to be put through this tough surgery now just to be sure it's reasonable to radiate both lungs later on. It's a cruel but unassailable logic, forced upon us by the time crunch. Meanwhile, we're still waiting on the pathology report, which only tells us if Em is likely to live or die. _Details!_

Our 3rd-year student, a nice young man named Adam Burke, writes in the chart that "Emily's parents . . . are somewhat numb and overwhelmed at present." Talk about a glaring glimpse of the obvious. Then again, he's just learning – as are we.

I do my first nurse-supervised change of Emily's Broviac dressing early that afternoon.

Hoy stops by and gets consent forms signed. He warns us again that this surgery will be far nastier than the nephrectomy. He'll have to spread her ribs considerably, and they'll leave a large tube running into her lung just below her left armpit for drainage purposes. There is a significant danger of lung collapse. She'll be in a world of pain when it's over. She might need physical therapy down the road if she ends up slighted hunched over on that side.

"I'll do my best," he promises.

We carry Emily down for surgery at the scheduled time and hang out in the brightly decorated peds anesthesia room.

"Oops! Sorry," says Hoy upon finding us there. "It'll be a while still."

The operating room he wants is occupied. Em is uncomfortable sticking around, so we take her back upstairs. Word comes about an hour later that they're truly ready now. Down we go again. Our anesthesiologist is once again Katarian, and we're happy to see him. He gently knocks out Em-Cat and I hand her over. She laughs uncontrollably as he carries her off into the surgical suite.

"She's my child all right," I brag nervously to Vonne. "Always leaves them laughing."

We head up to the room and pack up our stuff. As a result of Vonne's complaints about nurse Lee to the unit's top nurse, a wiry little Jewish-mother-to-end-all-Jewish-mothers by the name of Bobby Feldman, we're headed to new digs. This fiercely protective lady has decided to take us under her wing. We couldn't be more pleased, especially when we meet her right-hand and protégé – that long, cool drink of water from Texas, Kris Taylor. These two are right out of central casting in terms of being hilarious opposites and unlikely compadres – the ultra-ethnic, non-stop talker from the big city and the laid-back, steely-eyed cowgirl with the Lone Star drawl. In filmmakers' terms, it is Woody Allen meets Sam Shepherd.

The two nurses are a godsend. Once Bobby declares us her own, everything changes for the better. She's a gentle, if still tyrannical boss. She treats Emily like a little princess. _Nothing_ is too good for us, and Kris is in charge of making it happen. Whenever Kris is on duty, she's ours to keep. And when she isn't, we get the next best thing with ever-cheerful Wanda, the highly proficient Colleen, and our old standby, Mary Paine. Kris herself, though, is the key. She understands well our situation, and immediately empowers Vonne and I to act as in-house caregivers – in effect, outsourcing much of the nursing load to us and thereby cutting down the number of staff intrusions into our little world. Thanks to Kris, we finally have a clear system for interacting with staff. Better yet, the staff starts adapting to our preferred operational methods, which Kris helps us to formulate and articulate. In short, we stop adapting to the system, and the system starts adapting to us. This changes everything in terms of our comfort level, plus greatly boosts our self-confidence for the long haul ahead. Bobby and Kris help us more than they'll ever know.

It really does become _our little world_. The first sign of the new Bobby regime is our moving to a private room on the other side of the step-down unit. Bobby says we need one due to the chemo coming up, and gets it for us right away – a good four days before the chemo starts, thus averting any temporary relocation back to the dingy general peds ward over the weekend. We switch rooms while Em is in surgery _._ Once ensconced in our own room, all the old rules seem to go out the window. As far as Bobby is concerned, so long as we don't break any big ones, we get to do whatever we need to make Em feel better and survive the first round of chemo.

Meanwhile, Em's surgery goes off without any major hitches. No major blood loss and so no transfusions. No Foley catheter needed (thank God). The lung inflation scheme is working, as scary as that thick tube looks going into her side. The nodes and other specimens come out easily and are on their way to California by the end of the day. We pick Em up in the recovery room and have her back by about 7pm. Once again she's hooked up this way and that, but we suffer no meds trouble as Hoy has her on Toradol from the start – at our insistence. When Emily has some trouble sleeping later on, Bobby augments with Demarol and Em sleeps through the night on that.

A colleague of mine picks up my mother at National Airport and brings her to the hospital around ten. Mom looks tired, but insists on spending the night with Emily. She has her mystery books in hand, along with her reading light and some snacks. Em is out cold. Vonne and I leave at 1am, and bed at the Leavey Center in a double room paid for by my Dad. It's a relatively luxurious setting, but we take little notice.

Friday, July 15th (Day 8)

Grandma Colleen awakens us a little after 8am with a phone call. There's a question of adjusting the pain meds and the nurses want an immediate decision. I hustle over while Vonne showers, returning later for my own. Once relieved, Colleen spends the day over in the Leavey Center, resting up for her evening duty.

Around 10am, we meet our first doc from the radiation oncology staff, Dr. Parder, who briefs us on Em's treatment schedule and what we'll have to do to get her ready.

If the histology is favorable, Em could receive the smallest course of treatment allowed under Stage-IV diagnosis: 1,200 rads in fractionated doses over eight sessions for the lungs, with the right abdomen receiving one less session for a total of 1,050 rads. Since her lung tumors are already below the cut-off size for additional radiation, it could all be over in less than two weeks. Of course, if the histology is unfavorable, then we're talking a _lot more radiation_. We discuss the need to cover totally any vertebrae included in the right abdominal treatment field, so as to avoid unbalanced bone growth later, which would cause spine curvature. We also talk about lead shielding for her left ovary. Believe it or not, we're trying to think ahead to Em having children. As for her first treatment session, everything depends on her recovery from the thoracotomy. Parder is thinking late next week.

Gootenberg stops by with resident Victor. No word yet on the histology. We get the name of someone on the peds onc staff who'll be on call over the weekend – in case anything arises. We'll start on Monday with the chemo Actinomycin D, and Em will get one shot each day through Friday. We'd start any treatment "arm" of the protocol thusly – regardless of histology outcome. The Wilms' clock is ticking, so we start Monday – pathology or no.

Gootenberg apologizes profusely about leaving us hanging over the weekend. To say we're disappointed is a vast understatement. But by this time, complete uncertainty about Em's chances for survival is beginning to feel like normality. After all, we _live_ at Georgetown University Hospital. Our lives are just one gut-wrenching drama after another. We shrug our shoulders. "What's another 72 hours to find our whether she lives or dies?" Medical student Burke writes in the chart that we're "in a holding pattern," and that we're taking it well.

The nasogastric tube comes out early in the morning, and Em moves toward a regular diet by the end of the day. Her recovery is moving along nicely.

The peds surg docs have a portable X-ray brought in mid-morning. They shoot her chest to check the draining tube. Once position is verified, chief resident Petro will yank out the tube in one fell swoop. As usual, she speaks quite mechanically to Emily as she prepares to do the deed. Em senses everyone tensing up around her – we know it'll hurt a lot – and instinctively starts spewing out soothing words typically offered by med personnel in these situations: namely, "Hold still and it won't hurt too much. I don't mean to hurt you. I'm sorry I have to do this." At one point Emily apologizes for causing pain and since she's talking right at Petro, the res gets a little flustered and responds – rather guiltily – that Em doesn't need to apologize for anything. All the attending lower-rank residents turn their heads toward me, curious to see my reaction to this odd exchange. I just grin slyly and suggest that Em isn't apologizing for anything. "She's merely feeding you your lines," I suggest. In truth, it's Em's nervous response to self-comfort _them_ using _their_ coded language.

Oh, the lowerlings laugh that one up big-time, until the formidable Petro flashes a nasty glance. Many throats were cleared then – including mine. The good doctor applies a large pressure bandage, and bleeding is minimal. Em's lung is checked again by X-ray for signs of collapse. Once cleared, she's on her feet again with only the telemetry monitor on her finger.

Em walks a bit this afternoon, but she's clearly in a lot of pain. We follow her very closely on these walks, because the meds make her somewhat wobbly. She's hunched over considerably, as Hoy predicted.

In the afternoon Emily is sedated for an EKG/echocardiogram of her heart. It's performed right in her bed and serves as the initial baseline for all others to follow. This test is necessary because of the cardiotoxic chemo Adriamycin, which Emily will start receiving in late November. The oncologists just want to know what her heart is like before it's damaged – however much – by radiation and chemo. It's a grim thought amidst all this progressive recovery, but par for the course, I guess.

I do the catheter dressing change again, with Vonne supervising. We're getting better each time. The nurses are very pleased. They say many parents have a tough time learning it and some never can stand it due to the emotional response. Vonne and I agree: it's pretty scary seeing that catheter come right out of her chest. But what else to do? We learn the change in record time, according to our teachers.

As is the norm, late that evening Em once again resurrects herself after the EKG doping wears off. Following a long walk around the hospital and a visit to the toy room, it's all Grandma and videos until she nods off. Vonne and I stay at the Leavey Center again, enjoying it while we can. We lose the room tomorrow to a soccer festival. Our social worker is trying to find a dorm room for the next few days.

Saturday, July 16th (Day 9)

Since we pretty much have today and tomorrow off with no diagnostics, the goals for the weekend are simply to wean Em off the Toradol, get her moving as much as possible to drive up her hunger, and then force down as much food as possible. It feels weird trying to fatten her up so she can be severely poisoned over the coming week, segueing right into the chamber of horrors that is radiation oncology. _But hey, it's the weekend! Lighten up a bit!_

Emily's godfather and my oldest brother, Jerry, comes down from New York on the train today. He brings gifts from Em's godmother, Susan, who's suffering a virus and wisely avoids Em on the eve of her first plunge into immunodeficiency. Jerry also buys lunch for us at one of the Leavey Center's restaurants.

Later, while Vonne goes to check out our new dorm accommodations and rest a bit, Jerry and I see Arnold Schwarzenegger's spy-action thriller, _True Lies,_ at the old-time movie palace on Connecticut Avenue. It's a great time, although the key moment comes with Jerry's direct question in the car on the way there.

"Tom, tell me, do you think she's going to make it?"

I don't know why, but I answer, "Yes, I think so."

For some reason, I've turned the corner on pessimism, despite the huge uncertainty of the pathology. Strange, but it feels good to say that to someone for the first time, namely because Jerry is the first person bold enough to ask the question outright. Then again, because we feel ourselves gearing up for the scary drama of Monday's chemo, it's hard to imagine answering any other way. _We're her parents. Of course we think she'll make it._

Once back to Georgetown, Jerry departs in a cab for the train station while Vonne and I head to the dorm. Mom has the Emily watch, and our little girl is back to her old trick of trying to stay up all hours of the night watching favorite videos.

The dorm room Yvonne Bush gets for us doesn't turn out as planned. We're supposed to get this nice room on the top floor. Instead we get this horrible basement dungeon, known among students as the "bat cave." We dislike the room intensely and can't believe Georgetown is charging fifty a night. We throw down $250 for five nights and feel both ripped off and trapped by circumstances.

Sunday, July 17th (Day 10)

I attend Sunday service in the hospital's chapel while my Mom watches Em. Like my Mom, Vonne favors the student chapel. Either way, plenty to pray for.

Em is still on Toradol all day. Her lung dressing is now considerably downsized. She also gets off the telemetry monitor. Once again, everyone is amazed at Emily's powers of recovery. Her reward? Chemo tomorrow and radiation by week's end. The irony of our incentive structure begins to dawn on us.

Em is getting used to having Grandma Colleen around, depending on her presence during routine scary things like daily exams, according to our ever-present scribe, Adam Burke. Our medical student takes to my Mom like a doting son and vice versa. My mother says he reminds her of my little brother Ted in med school.

Burke is truly the man of service. Whenever we bring up any question about Wilms' Tumor, its treatment, or long-term survivor issues, he immediately runs off to the hospital library, researches it, and comes back with the last four or five journal articles. And sometimes he does this at 2am! His rapid turnaround is the reason why we're able to get so smart on the subject so fast. It means a lot to us, and helps us master the confusing situation as much as parentally possible. By now we're already able to talk the talk so well that many docs – not including oncologists, of course – confess that we know more about this rare cancer than they do. That's an important achievement for us, because any parent needs to know such details when meeting up with doctors who, while providing crucial care, are not experts on the disease. If you can't ask the informed questions, then where's the informed consent?

This afternoon Vonne and I see the movie, _Forrest Gump_. Once we return, Colleen and Vonne immediately head to the dorm, as my Mom is exhausted. I take the Em duty.

Around 11pm, Em and I head out for a stroll along the miles of corridors that make up this enormous hospital complex. We make our way to the 6th floor of the Bles Building, finally succeeding in our quest to find a route to the roof patio that we'd admired from afar since our arrival. After a bit of gazing at the stars in the muggy night, Em and I head back in.

As we pass what Em calls the "Mother Mary-Baby Jesus" statue, she signals she wants a closer look. I hold her up and ask what she thinks Mother Mary is telling her baby.

"She saying to Baby Jesus, don't feel bad, don't feel bad," replies Emily.

"Why's that?" I ask.

"She knows the Baby Jesus is very sick and she is very sad and afraid. She wants to tell him to hold still and it won't hurt so much. She's telling him, 'You'll be okay, you'll be okay. You'll get better soon.'"

I count that as her evening prayer. I know it's mine.

Monday, July 18th (Day 11)

Gootenberg drops by late in the morning with resident Elizabeth Sutton. Happy he is to report that our voyage of discovery is now at an end. Fifteen days after we originally discovered the lump, the diagnosis is complete. Em's Wilms' Tumor displays a favorable histology. Her odds of dying now stand at about one in five. She's more likely to die from the cure than the disease, however, as relapses are uncommon. The chemo is just as likely to kill her directly (toxicity) as indirectly (pneumenopathy, or illness contracted during immune system depression). Whatever the risks, the chemo and radiation are Emily's best chance for survival, as the cancer will certainly kill her quickly without their immediate application. The historical record is clear: delay equals death.

This game is on.

Treatment consists of 8 sessions of radiation over 8 days, and 65 doses of Vincristine, Actinomycin D, and Adriamycin spread over 65 weeks – or roughly 15 months. We're told to expect frequent delays – or _suspensions of the protocol_ , which can easily add three to five months to the process. Gootenberg says we'll probably get through the protocol in about a year and a half.

Gootenberg also expects a number of hospitalizations will be necessary during the protocol. For example, during any periods of neutropenia (when Em is bereft of her first-line-of-defense white blood cells, known as neutrophils), any temperature over 101 triggers emergency antibiotic treatments in the hospital. She'll suffer these neutropenic phases several dozen times. They'll just be a fact of life. Chicken pox is a probable trap, as is the killer pneumonia. The radiation therapy will cast a long shadow by suppressing her immune system in a more general sense throughout the fall and into the winter.

There will be few, if any, safe periods in the first four months of treatment, known as the _induction phase_. That's when we'll have the cancer directly in our sights – the killing zone. After that, it's round after round of saturation bombing with the chemo, wiping out any remaining rogue cancer cells. If Emily survives the next 18 months, she'll probably have this thing beat. Thirty months into this life, her foreseeable future has been whittled down to only 18 more. A life-and-death struggle until her fourth birthday, then how many more candles on her cake?

Gootenberg:

Now I know that all sounds bad. But we have to remember Emily's strengths: her good health, her strong spirit, her demonstrated resiliency that we've witnessed here, and of course, you – her parents. We're all going to be working for Emily's eventual cure here, and while I can't make any promises to you – won't make any promises to you, I will say this: everything looks on track for now. So let's start the chemotherapy today with the Actinomycin D and go on from there. All right Mr. Barnett. [Shakes my hand and smiles grimly.] Mrs. Barnett. [Same to Vonne.] Emily's grandmother. [Waves to Grandma sitting on the bed.] We'll be by tomorrow to check on Emily.

Later that morning Dr. Hoy formally transfers Emily's case from peds surg to peds onc and Dr. Gootenberg. We're on the launching pad and ready for lift-off.

At noon, they draw Emily's blood for a count. The numbers give us a sense of what she'd have normally – if not for the chemo. The key numbers are platelets at 556K and white cells at 10.2K. We won't see numbers like that for a long time.

Our chief peds resident pens her last chart entry before leaving us for the duration. Henry's past battles with us forgiven but not forgotten, as she writes:

Parents are extremely anxious since dx [diagnosis] & surgeries have proceeded so quickly. They are involved in care & sleep overnight (mother, father & GM [grandmother] take turns). They should be informed of plans & respond/react to caregivers better when caregiver tries to coordinate activities of other services & keeps parents updated. Good luck!

Kris Taylor gives Em some Zofran, an anti-nausea med, at about 3:30 that afternoon. The Actinomycin D arrives soon after, right out of sci-fi movie with its spooky, phosphorescent yellow tint. Emily gets her first dose at 4:30, with Vonne, Grandma, and I watching. We half expect all sorts of wrenching and vomiting and seizures on the spot – but nothing happens.

That night I stay in the dorm room with my Mom – a weird situation at the end of a day full of them. Vonne and I have already decided to cancel our remaining nights there and get our money back.

Vonne stays with Em-Cat in the hospital. It's a relatively quiet night for her. She's sweaty and agitated in her sleep, and when she seems in some serious distress about 1am, Vonne asks for, and gets, Tylenol shot into her catheter. Em is quiet after that, but things start hopping first thing after sunrise.

Tuesday, July 19th (Day 12)

At the crack of dawn Emily is taken down to radiation oncology, where she's given a general anesthesia to render her pliant for a number of prepatory procedures. First, her entire body is X-rayed and precisely measured. Protective lead body shields are custom crafted from these measurements to cover all adjoining body areas not designated within the radiation field.

Dr. Harter, chief radiation oncologist, decides to do Em in a single radiation field encompassing both lungs and her right flank in order to avoid a gap or overlap in the diagnosed _tumor bed_. Harter's final call is that Emily will receive seven radiation sessions over the single field (150 rads x 7 = 1050 rads) and one additional treatment for both lungs (150 rads x 1 + 1050 = 1200 rads total).

The technicians then etch four blue dot tattoos running in a straight line along Em's torso. These will serve as fixed reference points for the lasers guiding the computer-orchestrated delivery of radiation. Once calculations are completed and the shields put in place, the techs strap Em down tightly on the table, flip on the lasers, leave the room, and simulate an entire session from a control booth just outside.

While all this is going on, Vonne and I have a long conference with Harter, who explains everything and answers all our questions. He aims both to please and reassure. First, Harter reveals the preliminary results of the lung nodules' biopsy just in from California: they are indeed metastatic Wilms' Tumor. He emphasizes that he's never seen Wilms' Tumor caught so early in the lungs, and predicts the three still left in Em's left lung will be completely obliterated by the first few sessions. He'll be greatly surprised if Em needs any more treatments beyond the minimum eight.

Harter describes the routine once we leave the hospital after the first real session Friday morning: check-in at same-day surgery admit, then to radiation oncology for general anesthesia followed by treatment, and then off to peds surgical recovery until release. If we get to same-day surgery by 7am, we can be out by nine. Our talk done, Vonne and I grab pamphlets on surviving radiation before leaving.

Back in Em's room, Gootenberg stops by with resident Victor Alidow, delivering the anticlimactic news about the lung metastases. Em is officially Stage IV now. Even in the rare world of Wilms Tumor cases (approximately 400 cases each year in the US), she is a one-in-ten case. Only 5 percent fall into the even worse Phase V category, so 85 percent of all cases are less severe than Emily's.

Since Gootenberg is already talking about a Friday discharge, we push to have the chemo time moved up earlier today. The rule is to give the chemo at roughly the same time each day – give or take an hour or two. We'll start "taking" an hour every day, so we'll be able to get out as early as possible Friday. Nurse Colleen does the honors today with the Actinomycin D at around 3pm. Once again the Zofran works its magic and Em comes through without a hitch.

I stay with Em tonight, as Yvonne Bush arranges rooms for Vonne and Colleen at an on-campus convent. Vonne reports the place is amazingly quiet and that they both should be able to catch up on their sleep there.

About 11pm Em and I head down to the basement on our usual rounds. As per our custom, I buy some hot chocolate and M&Ms, letting Em put in all the money and push all the buttons. Then we stroll the halls for a good hour, one football field-length corridor after another, with breaks for screaming festivals in the echo-enhancing stairwells. While we walk, I scoop off the hot chocolate's foam and let Em lick it off my fingers. "Mmm," she declares. _"_ Good coffee!" We end our trek with a short visit with Mary and Jesus, and then a relaxing pit stop out on the rooftop patio. There I am, plunked down on the patio floor, dead tired, while Emily literally runs circles around me, laughing in delight. It's a surreal sight to behold. Nothing in this process is ever what you expect it to be. The easy is hard and the hard is easy, and you're constantly winded from racing back and forth between the two extremes.

Taking Vonne's advice, I have Wanda repeat the Tylenol injection when Em finally gets into bed. As a result, she gets through the night just fine.

Wednesday, July 20th (Day 13)

A rude awakening defined: a phlebotomist stops by the room at about 7am. I see her getting ready to do a blood draw as I peer up from my cot. I figure, no problem, that's what the catheter is for and so I lay back down. Then Em screams out in pain – stuck in the arm. I jump out of bed, spouting in anger at the poor woman. She's very sorry, but there's no excuse. I later complain to Adam Burke, who says he'll make sure it doesn't happen again.

We've been scheduled for quite some time to see the genetic counselors today. After the appointed hour passes, word arrives that they're too busy to see us today. "Maybe tomorrow," we're told. I find myself wondering if the subject is moot anyway.

We meet peds onc nurse Mary Alice Dragone this morning as she stops by to address any concerns we have about the chemo. Of all the Lombardi nurses, Mary Alice is by far the most upbeat, cheerful – even perky (and those aren't easy titles to win). She must have been a cheerleader or gymnast in another life, because she bounds around like someone just so pumped up for everything – anything.

Like the other peds onc nurses, Mary Alice just gives off these incredibly confident vibes: _t_ _hings will work, stuff will get done, ask and you shall receive, complain and we will ream out the guilty._ Nothing is too small or beyond these ladies. The patient is everything in their eyes. As a parent, you feel good just being around them. They know their stuff. They seem beyond confident – fearless even. They comport themselves like they're stars in their field. If it's an act, it's working wonders on our collective psyche. You desperately want them to be exactly what they seem to be.

Bobby writes in Em's chart that Vonne and I are so proficient at the Broviac dressing change and catheter-tube flushings (syringes of an anticoagulant to prevent clotting in the lines) that we're ready to do it at home without supervision. She says most parents need supervision for a substantial time after going home. Our confidence in these procedures – as absolutely alien and frightening as they were only days before – grows exponentially with each iteration.

We're mentally gearing up for the rigors ahead, speaking in the future tense without wincing. And it feels good.

Kris Taylor administers the Zofran and Actinomycin D today – no problems.

Later in the afternoon Vickie Sands stops by with our mail. She brings a pair of barber scissors. We figure Em's hair will be gone in a matter of days, and since some in the back is already matted from days in bed, I go ahead and give her a short, boyish cut. I do an amazingly bad job, but she still looks better without the matted hair. On the spot, Vonne vows I'll never again cut Em-Cat's hair.

Plenty of people from my company have been by over the preceding days. At some point during the first week, a bunch of them get together and organize a daily carryout lunch for Vonne and I. Other friends keep us flush with snacks and drinks. With Jeff and Vickie Sands maintaining the house, we're well covered on the home front, especially with Vickie's tireless efforts on the mail and bills. Vonne and I are a lot like front-line soldiers fighting on Em's behalf, day-in and day-out at the hospital. So while we labor on the so-called pointy end of the spear, we enjoy robust logistical support from the rear. People are wonderful throughout.

Steve and Bette Meussling (Vonne's oldest brother and his spouse) send Emily these funky, fuchsia _Princess Jasmine_ slippers over the weekend, and they quickly become a prized possession. Em hates to wear slippers, but the nurses insist on them. Vickie brings a slew of them from home, but Em puts up a big fuss over wearing any of them more than once. Since getting her out of bed and moving about is a key goal of her surgical recovery therapy, we go to great lengths to get Em to wear anything. In the end, it's the _Jasmine_ pair that proves to be the glass slippers for this Cinderella, as Em's always happy to put them on and head out the door. It's during our regular late-night strolls around the hospital complex that Em becomes a recognized figure among the graveyard shift, in part because it's strange to see someone that small moving late at night and in part because of the slippers, which become her signature look and a conversation starter.

Vonne and my Mom get thee-selves back to the nunnery again tonight, and I pull cot duty with Em. It's another relatively quiet night with new and very nice Nurse Susan at the helm. Em has some stomach discomfort around 4am, which we decide to treat with Zofran instead of Tylenol. It works.

Thursday, July 21st (Day 14)

Gootenberg and Elizabeth Sutton stop by early in the morning. Everything continues to look good, in their opinion. The fact that Em is handling the chemo with ease is very important. Everything tends to get worse over time and accumulated dosage, they warn. Gootenberg: "Remember, it's a cumulative process. So let's all be grateful that it doesn't look bad right at the start, as we have a long way to go."

Point taken.

Our discharge tomorrow looks even better now, but many hurdles to jump between now and then, including two chemos, the first radiation, and a CAT Scan.

Kris Taylor once again administers the chemo, about 1:30 in the afternoon. Right after that we begin prepping Em for the CAT Scan.

We try to get Em to swallow that mother-load of foul-tasting contrast, but it's a no go. So once Kris dopes Em up for the CAT Scan, she inserts a nasogastric tube, with Bobby jumping on the bed and pinning Em down for the fun part. After much gagging, they get what seems like a quart of the heavy white liquid into her stomach, which bloats considerably as a result. But by then, Em is out cold. We take her down around 4pm and have her back up around six. This Scan will serve as the post-surgical baseline for future diagnostics that look for relapse and immediate damage from the radiation – not to mention later complications from the surgeries themselves. Happy thoughts all around.

It's a quiet evening, with Vonne and Colleen off to the convent early and Em still asleep. I start packing stuff in anticipation of our departure tomorrow.

Predictably, Em resurrects herself around 8:30, starts eating, and, after several requisite videos, demands another night out on the complex. We head out around 10:30, hit the canteen and _Mother Mary-Baby Jesus_ stops in turn, and end up on the roof-top patio around midnight – with at least me all walked out. While Em runs around babbling about the sights, I stand at the railing and peer out over the hospital complex, thinking about all the people we've met in the previous two weeks.

In sum, it's an amazing cast of characters: the intense Gootenberg (peds oncologist); the preternaturally calm and confident Hoy (peds surgeon); the talented-but-frosty Petro (chief peds surg res); the handsome and dashing Victor Alidow (chief peds onc res); the sweet and efficient Elizabeth Sutton (number two peds onc res); the larger-than-life Bobby Feldman (chief peds step-down unit nurse); the down-home, _how's-Dad-doing-today?_ Kris Taylor (floor day nurse); the ever-cheerful Wanda (floor night nurse); the warm and empathetic Katarian (anesthesiologist); the burly and optimistic Harter (head radiation oncologist); the tough-as-nails Henry (chief peds floor res); the puppy-dog Adam Burke (med student); the super-confident and upbeat peds onc nurses, Donna Oishi and Mary Alice Dragone; the resourceful Mary Paine (floor nurse), who comes up with the Toradol solution just when we need it; art therapists Tracy and Lynn, with all the fun time they spend with Emily; and, of course, our sounding board and tireless advocate, Yvonne Bush (social worker). In all, we meet and deal with a good 100 medical personnel over the two weeks. They all need things from us and we need things from all of them. Everything is a negotiation of sorts, worked non-stop around a 24-hour schedule. Now, when it's almost time to leave, the world outside seems strange and unfamiliar, as does our own home, whereas this place almost feels like the womb, much as we want out.

Add up all these personalities, throw in larger-than-life figures like Nona Vonne and Grandma Colleen, and you can't help wondering – amidst all this _made-for-TV_ drama – if it wouldn't have been better if they'd gotten somebody else to play you. I don't know . . . maybe someone better looking, without the horrible bed hair, or somebody smarter who could deliver his lines better. You just wonder if you held your own.

Naturally I have a hard time faulting anything in Vonne's performance. She is amazingly brave and tough throughout. I can remember being so sleep-deprived at points, so out of my mind with fear at points, so desperately sad and without reasonable hope at points, just so incredibly stretched to the breaking point at points, that it's hard to think I could have survived this _descent_ as a single parent. In the most elemental sense, this is what marriages are for. I wish I could look back to the summer of '82 – when we first met – and say I knew she always had it in her, but honestly, I didn't know anyone had such strength. I just know now that she gives me a lot of my own strength – by extension.

Emily, of course, plays the heroine throughout our long run, and she is always _stage front_. It's hard to summon the words on her behalf. They say character is not what you think you are, but only what you do. Em-Cat's behavior speaks for itself. To see such courage coming out of your two-year-old firstborn is all the thanks we need for the last two weeks. She just never ceases to amaze. Cancer steals many things, but it gives us that. It's not a fair trade, but it's not zero-sum either.

So there we are, Em and I, on our last night in the hospital, facing the week's last chemo dose and her first bout with radiation the following morn. And as I happen to glance back over into the windows of the CCC Building's 5th-floor waiting area, I encounter a most familiar sight – a young couple looking like a truck had just run them over. They're calling relatives on the phone and crying profusely, obviously in distress at the horrific news they're delivering to someone. It's the peds floor, so it has to be their kid. Then the elevators open and older people rush toward them, everyone dissolving into a mass of embraces, kisses, and quietly hushed words of comfort. From a distance, I take all this in like a silent movie. No soundtrack is needed; I remember all the lines.

I also remember how, as I called relatives with the horrible news on that Saturday night almost two weeks ago, I happened to glance desperately out the window, the very same window through which this Tom now peeps. At the time, I can't imagine what I'm hoping to find out there in the darkness, but what I see sticks in my mind: on the roof-top patio in the distance I see various patients out for a bit of night air with family members. Despite all the wheelchairs, IV poles, and scary bandages, they all look pretty relaxed, like they're actually enjoying themselves out there. I think to myself that if Emily survives, maybe we'd be able to head over there some time and take in the view, the stars, the night air – the relaxation.

Fast-forward twelve days. We're on the patio one last time, and indeed, we have all been through a lot even to make it to this point – _contemplating life after the hospital_. Absorbing this silent drama across the way reminds me of where we started this whole voyage. It's like looking into your own past, watching the family videotape, or travelling back with the _Ghost of Christmas Past._ These poor souls are stuck twelve days back in the storyline. I gaze down at Emily and realize how far we've progressed from that awful moment. We've already held the wake and funeral for that life, that family and those dreams. What we have now is very different and very much the same – just brand new.

Then I spy a young urchin walking along the street below and, getting his attention, I pitch him a ten-pound note as I lean over the balcony.

"Go and fetch me that big goose in the butcher's window," I call. "And keep the change, young man!"

"Yes sir!" he cries. "Oh . . . and Merry Christmas!"

Okay, so it doesn't go that far, but at least now I can cry without shame during _The Muppet Christmas Carol_.

Anyway, it's not every day you get to see yourself in the mirror so clearly. Strangely, it doesn't hurt as much as you'd think – seeing it all on replay. Maybe in a couple of weeks that father will stand here with his child, contemplating how lucky they were to survive whatever it is that reached down and smacked them today. Across the night air, I silently mouth, _"_ Good luck!"

Emily and I head back to the ward for our last night away from home.

Friday, July 22nd (Day 15)

Another quiet overnight and then we're up early for the first radiation session. The orderlies show up around 7:30, catching me in the shower. I hurriedly dress and off we go with Em riding in a gurney. There's no time to call Vonne, not that it matters anyway, since the convent is a good distance away.

Once we arrive at radiation oncology, my heart is buoyed to see our old friend, the anesthesiologist Katarian. Our good drug doc uses his own special cocktail on Em. It contains some amount of an anti-nausea drug, he assures me, but it's not the familiar Zofran. He's certain it'll work fine, and last through her later chemo.

After Em is knocked out, I hand her over to technicians who loosen and remove her clothes, and then begin the intricate process of strapping her into place for the session. I leave the cavernous treatment room, stopping for a bit in the control booth to look over all the monitors and impressive equipment. It's like something out of a science-fiction movie, but far more intimidating since I know this isn't make believe. In a couple of minutes Emily will be radiated over most of her torso.

All our lives all we hear about radiation is that it's the closest thing to hell on earth. It is death incarnate, nuclear war, the end of life. Today we're supposed to reverse gears and accept it as a necessary evil – a means to an end. All of a sudden, _radiation equals life_. Just try saying that to yourself. I can't. It feels more like _radiation equals failure_ , or _punishment_ , or _guilt_.

I sign the consent form. It's the biggest lie I've ever attached my name to. I don't _consent_ to radiating my daughter. I didn't agree to any of this crap. I never will. None of this makes sense right now, no matter how hard I try to stack the reasons in my head. My gut tells me this is all completely wrong, completely back wards, completely upside-down. I leave the room and all I can think is, _Forgive me Emily. I'm so sorry this is your life._

I head out to the waiting room, and Vonne pops up nervously. We talk for what seems like a while but actually is only about five minutes when out rush the techs with Em on a gurney. It's all over and they're turning her over to the peds recovery unit. A bit later Em is roused and we head back to the room. She looks none the worse for wear, and yet I'm scared to give her a good stare, as if I might spot some huge and ghastly burn. I know I'm being illogical. This is all just so scary.

Later in the morning we do the last chemo dose without additional Zofran – as per Katarian's suggestion. A new nurse, the very nice Jenny Egan, does the honors. All seems to go well, but Em is definitely hurting some.

Then, just as we get Gootenberg's go-ahead to take off with all due speed, in pops the geneticists. They finally deign to make an appearance. So we put off our departure and, as Jenny rushes about gathering catheter supplies to take home, we spend a few minutes with Dr. Scribanu and her minion.

Scribanu is one arrogant lady, who listens to us with a bored face as we explain our concerns. She then tells us she wants to look Em over by ordering, "Inform the child I am now going to examine her physically." Em looks at this cold fish as though she just stepped off the Mars Express. Scribanu's bedside manner is equally off-putting, and Em screams in terror at her touch. I'll give Scribanu some credit: at least she's smart enough to back off. The doctor announces portentously that we'll have to bring the mountain to Muhammad sometime soon – at Muhammad's convenience, of course.

Scribanu then commands Vonne and I to a side room, where she gives us a stilted lecture on the basic genetics of Wilms' Tumor. It's nothing we haven't heard or read before, and seems like a waste of time. Before the great lady leaves us for bigger and obviously more important things, she orders us to give detailed family histories to her minion. We miss her deeply from the get-go, but work through our pain to pass along the needed data. Minion promises faster-than-fast action. Vonne and I stare dumbly at each other, searching for the _L_ tattoos on our foreheads.

After that precious moment and precisely at noon, we four (parents, child, grandma) make like bats out of hell. We wheel Em out to the emergency room entrance and I run ahead to get the car, which I had stuffed full of things earlier in the morning. We have a hard time getting all the discount day-pass stickers on the small parking ticket, but thanks to social worker Yvonne Bush, our total bill for two weeks is $20.

Emily becomes very sick on the ride home, throwing up a carload. We take her straight to bed. She vomits all evening long. We blame Katarian to a certain extent, but we wonder if the radiation is going to be this bad every time. Our fear of the future grows exponentially by the hour.

My Mom, exhausted from ten days in the hospital, makes a beeline to the guest bedroom for a nap.

I could go on for pages about the effort Emily's Grandmother made during the past ten days. We certainly hope she never has to go through anything like this again, but we're very grateful for the crucial role she plays during our time at Georgetown. The relief she provided Vonne and I was huge, close as we both felt to snapping on a daily basis as things wore on. Emily will know of her Grandma Colleen's loving and heroic efforts on her behalf. It is a story I will tell over the dinner table at family gatherings for decades to come.

After I finish checking out the house, I'm off to have my head shaved to show my solidarity for Emily. It's the usual stupid show of solidarity that people glom onto, but it's heart-felt. The hair stylist, while sympathetic to my cause, talks me into leaving a decent cap of hair, buzz cut-style, on my scalp.

After a dinner of take-out pizza that a colleague of mine provides, Grandma and Vonne are soon off to bed, exhausted and at wit's end after the long ordeal. Since I'm completely witless, I scurry about the house, getting myself further exhausted with this or that little task that could have easily waited for the weekend. Clearly, I'm a bundle of nerves. A couple of beers, a little TV, and up I go to bed around midnight.

I'm surprised to find Vonne still awake. She has a rather serious look on her face and an even more serious tone to her voice. She waits until I climb under the covers and am comfortably supine.

"Tom," she says quietly, "I've got something very important to tell you."

"Yes?" I reply sleepily.

"You know that home pregnancy test we still had? Well, I did it a couple of hours ago. I'm pregnant."

As we huddle together in our bed that hot July night, we slowly talk our way through this stunning bit of news. There's no doubt about it, but both of us want to hear the other say it out loud: _this is fantastic if daunting news_. As we hold each other, we declare that we'll do whatever it takes to keep Emily alive and to get this new kid out into the world safely.

Here ends our descent. Here begins our new life.

Chapter 3

Many Deadlines, Two Lifelines

Emily Update #1 (17-24 January 1995)

To start with some perspective: Emily is in week 26 of a 65-week chemotherapy protocol. She has received, as of this Tuesday morning (24 Jan), 31 of 65 planned doses, with four more by week's end. That leaves her 39 weeks and some change to go, or 275 days in all. Dosage-wise, she's about half way through. It's just that the chemo is more spread out now. After the July radiation sessions and the heavy, 13-week chemo _induction phase_ , she's now in the _round_ schedule most people know – that is, multiple shots over a week (the round) and then 5-to-6 weeks of recovery.

After finishing this week's round, Em has six more to go. Her last scheduled shot is currently set for 27 October. She endures two types of rounds and they alternate. The current round involves two drugs, Actinomycin D and Vincristine.

Actinomycin D is classified as an antibiotic. A workhorse chemo dating back to the 1940s, it has the usual chemo effect – it screws up cell division. Since cancer is basically rapid, uncontrolled cell division, cancerous cells are most disrupted, and as a result are hopefully wiped out. Of course, chemo's effect is body-wide, so lots of cells are disrupted, especially fast growing ones (e.g., digestive tract, hair, orifices), in turn accounting for such common side effects as loss of appetite and hair, and dental problems. It's _no pain, no gain_ , and _D_ stands for _deadly!_

Vincristine is an alkaloid derived from the Vinca, a poisonous plant found in rain forests. It works, like the other two drugs Em receives, quite well on Wilms' Tumor, especially in concert with early radiation. Side effects are basically the same, although Vincristine creates neurological problems involving coordination.

Actinomycin-Vincristine rounds go as follows: both on Monday, Actinomycin-only on Tuesday through Thursday, and both again on Friday. According to our routine, only the Monday doses occur at Lombardi in Georgetown. Our homecare company delivers the rest (we store in fridge) and then our homecare nurses (typically, former peds onc) administer them in our living room.

Getting weirder, huh? Needless to say, we have a lot of medical equipment at home.

I take Em to Lombardi on Mondays and then work late. Vonne oversees the homecare visits by our primary nurse, Kathie Clemens, who's very important to us. She's our advocate within the homecare company Caremark. She makes it all work.

The alternate round is Adriamycin – the really scary one. It's measured in lifetime doses because it destroys heart cells, leading to catastrophic failure at heavier amounts. Em is receiving 275 micrograms. The odds of heart failure are _guesstimated_ at about 1-in-10 at 550, about 1-in-1,000 at 450, and about 1-in-one-million at 350. It's virtually unheard of at 275 micrograms; it's never happened at Lombardi. It still scares the crap out of us, though. It's so potent an antibiotic that it must be _pushed_ through an IV flow over a ten-minute period or there's a risk of immediate cardiac damage – or even failure. Don't try this trick at home, even though we do. The Adriamycin rounds are three shots over three days, so they end by Wednesday.

In general, the rounds follow the same timeline. Week One is the chemo, when Vonne and I give Emily an anti-nausea drug through a portable IV pump every 8 hours around the clock. In Week Two, Em and I head into Lombardi for an exam and blood draw on Monday. Then Kathie does a blood draw at home on Thursday. We continue this weekly routine until Em's immune system recovers.

So far, Em's held off going neutropenic (i.e., dangerously immune depressed) until Week Three, but this comes on faster with each round. When Em-Cat is low on neutrophils, a cold-segueing-to-pneumonia could easily end up killing her. In fact, the majority of Wilms' Stage-IV deaths occur this way, with most others resulting from chemo toxicity (i.e., the kid is basically poisoned to death).

Once a universal death sentence, Wilms' Tumor itself kills in relatively few cases nowadays. But make no mistake, there's no living with this cancer. It's kill or be killed. Winning means surviving the cure, which – tough as it is – beats the hell out of the alternative.

For now, Emily is not showing much vulnerability to toxicity, so her fate rests largely in our hands - namely, keeping her healthy during immune depressions. These phases usually last 12 to 14 days, although that's stretching with each round. When the blood numbers get back up, Lombardi usually cuts us loose (no blood draws) for the rest of the round, or anywhere from 7 to 14 days (although that's shrinking with each round).

During these short periods, all is pretty normal. We struggle over potty training (she can do it, she just doesn't see the point). We get together with friends (no one can be sick, of course). We go a few places with great care, have as much fun as possible, and fatten the little kid up. Of course, we flush her chest-catheter tubes every day with syringes and change her site dressing every day or two, with accompanying shower. But other than those considerations, life seems pretty normal. I mean, we get out of bed every morning, so it can't be clinical depression, can it?

Emily continues to grow: half a centimeter since December and now topping 38 inches. Her weight is finally catching up – 32 pounds. She'll probably remain bald for the entire year. She kept her longish blond hair through the first 13 weeks of chemo, but it all fell out with the first Adriamycin round after Thanksgiving. In between Adriamycin rounds she grows it back, but it only amounts to a yellow fuzzy helmet and then it all comes off again.

As for the _R_ (remission) or _C_ (cure) words, there's no talk of even the former yet. She's had multiple CAT Scans of her chest and abdomen since July, including one this week. They show the following: the right abdomen remains clean, as is the surviving left kidney, which continues to handle the extra work load with ease.

Emily's lungs also look good. Before radiation, the right one still held three small metastasized Wilms' Tumors. They're completely gone now – no trace remains. This is good because the national council would have considered another surgery to remove even dead tumor tissue – just to be extra careful. As it was, Em was bent over for many weeks following the thoracotomy on her left lung, which also remains clean – with one key caveat.

The CAT Scans show a shadowed area ( _soft tissue density_ ) in the same area where the tumors were. It's fairly noticeable in last August's scan, but it's shrunken to the point of immeasurability in this week's. What is it? We're not sure. Maybe pre-cancerous, but that's unlikely. The doctors believe it's either a bit of lung that collapsed during last July's surgery and is recovering slowly, or simply scar tissue that's healing. The big point is that it's shrinking.

If the tissue density is cancerous on some level, then this is why we're still employing the chemo in its body-wide, _search-and-destroy_ mission. When you see kids run away from home to quit the chemo, or parents stopping the chemo to pursue alternative medicines, this is the trap they fall into: namely, assuming the cancer is gone because there's no clear evidence it's still there. But this repetitive, saturation bombing with chemo is crucial. Not one cancer cell can survive. That's all it'll take to kill Em.

As for lingering effects from the radiation, for now Em's lungs show a certain swelling that is normal. This should go away with time. So-called late effects, or lasting damage or complications, show up in a year or two – if at all. We burn that bridge when we get to it.

For now, no door has been shut on Em's eventual cure, however many compromises ensue. As Dr. Gootenberg says, "We are all working to the same end and everything seems to be going okay. That's all we can say." Success to date guarantees nothing in the long run, just a small measure of optimism for right now. But that allows us to dream the best possible path for Em, and your future needs hope when your present lacks joy. Giving up is not an option – just a constant temptation. We live lives of constant emotional exhaustion.

The good _C_ word remains unthinkable for two years after diagnosis – or July 1996. Wilms' Tumor deaths typically occur within two years of discovery. If your kid's cancer-free at two years, you're gaining on the cure – not that you'll ever hear oncologists use the term. Roughly speaking, two years with this cancer equals five years with most others. Wilms' is so aggressive and fast moving that you either beat it or die within 24 months. Relapses occur in about 2 to 3 percent, and those kids usually die. Overall, the cure rate is 90 percent and climbing for Stage III and lower. For Stage IV, the numbers slip to 80 percent. If Emily is going to be that _one_ in the 1-out-of-5, she'll probably die this year. We are killing time – one way or another.

Em's CAT Scan yesterday is one long unpleasant experience. Em and I endure two hours in rush traffic to reach Georgetown for the 9am medicated slot. Problem is, the techs don't expect us, though the front desk does.

"We can reschedule you, Mr. Barnett."

I smile like a crocodile and inform them that their lives will be a living hell if they don't work us in today. Meanwhile, we head to Lombardi to receive Em's chemo, getting the peds onc nurses to ream out Radiology over the phone for good measure.

Back to Radiology: the peds nurse, Teresa Proctor, instructs me to get a substantial load of liquid contrast down Emily, using Ginger Ale. Em hasn't had anything since nine last night. Forcing a carbonated beverage down a queasy kid is tough, especially when it tastes like crap. Em does her best and then some time.

We wait four more hours for the CAT Scan, necessitating still more contrast. At one point, I'm so mad I blow up in the face of the unit administrator who's been called out to deal with me. She's shocked to the point of backing herself into a wall and bumping her head. I am really losing it. Then a spot opens up briefly, but to grab it means foregoing sedation – something we've never tried. I agree in desperation.

Emily is clearly nervous at the prospect of doing it live. She asks many questions and makes many brave declaratory statements ("It is very loud, but not too dangerous!"). Yet the task is just too much for her: lying perfectly still for 20 minutes as the motorized table inserts her – engines roaring – numerous times through the Cat Scan's large "cave." On a Freudian level, I myself find it all almost unbearable, but then I'm her Dad. Anyway, Emily breaks down and we end up sedating her right there on the table. Afterwards, Proctor wants to send us upstairs for a couple of hours while she recovers. I'm having nothing of that, and use an old nurse's trick of rubbing Em's earlobe to end her slumber. Once awake, she wants out like crazy.

Emily deliriously sings Disney tunes all the way home and then demands a McDonald's Happy Meal, which she gobbles down. Proctor predicted Em wouldn't want to eat for several hours – go figuh! Em-Cat spends the evening running around playing with her animals while I lay down, suffering from nervous exhaustion.

Emily Update #2 (24-31 January 1995)

Em is now in week 27 with 38 to go, or 270 days in all. She remains _hospital-free_ since her July diagnosis, which we hear is a huge achievement. So many peds onc kids spend a lot of time in hospitals. Every time we hang out at Vince's (my Packer fan nickname for the Lombardi Cancer Clinic), we hear hospital "war stories" from burned-out parents. They scare crap out of us and we'll do damn near anything to avoid a similar fate.

Equally good is that we've suspended the protocol only one time – for only one week. That lapse occurred at the end of the 13-week induction phase in late November, and coincided with the farthest mark of the radiation therapy's long shadow of immune-system distortion. The suspension happened when Em's blood was too weak to start the first three-day Adriamycin round. Even so, we've done 27 weeks of the chemo protocol in 28 weeks of real time, and that's especially good. The key to the cure is navigating the protocol as close to schedule as _humanely_ possible. Over 30-years-in-the-making and over 25-years-in-the-refining, the protocol's essential truth is well known: stay the course and you get the best chances.

Also good is that Em has only had two transfusions (one each of platelets and packed red blood cells) during those dark, bottoming-out days last November. In neither instance could we – or anyone else – have donated the blood fast enough to suit the docs' purposes. They wait until it's absolutely necessary, and then they want it done pronto – as in, _that very hour_. Moreover, I won't donate any blood products out the fear that pre-exposure to my blood will render me less useful as a marrow source later on – if we come to that fork in the road. Vonne is Rh-negative, so she's out of the running. Of course, once the baby is born, he or she may be the best source – or maybe not. If it comes to that, we can remove marrow from the infant with no harm or major stress. It's been done plenty of times and it works.

People often tell us spontaneously that we need second opinions: "How can you just trust these doctors at Lombardi?" Another one we hear is, "Why not take Em to St. Jude's in Memphis and get this all for free?"

People need to know that the National Wilms' Tumor Study (NWTS) council based in Vanderbilt University (Tennessee) is still overseeing Em's treatment. This group of top researchers from across the country collectively oversees the large majority of Wilms' cases in the US. They make all of the big decisions with – of course – clinical input from our Lombardi team. For example, it was the council's decision to use the white-cell growth factor G-CSF during Emily's November suspension. More broadly, Emily is entered in the fifth seven-year round of the national NWTS study that further refines the protocol. That is a big picture, and we're part of it. Point being, we're automatically receiving second opinions. Em receives the same basic care she'd receive anywhere else in the country. Plus, Lombardi is one of the few full-service cancer centers in the U.S. – part of a national network. As for St. Jude's, there's no need to relocate just yet. Georgetown is affiliated with our HMO, Humana, which so far has paid for everything.

Of course, we've lost some serious money from having Vonne work less. But for now, we've dodged every insurance controversy, even though we're still fighting over thousands of dollars of bills from last July. If we take just a couple of financial hits, our fortunes could change dramatically, since this whole show will probably cost over $200K. And if Em's health goes sour and we're pushed to last ditch efforts, the money thing could take a turn for the bizarre. But so far, everything's holding up and we're very satisfied with Humana, Lombardi/Georgetown, and homecare provider Caremark.

Back to the real-time narrative: Last week Em's numbers are huge going into Lombardi on Monday to start the round. I already told you about that day's CT; enough said as to that farce. On Tuesday she gets her second dose of Actinomycin D and suffers a significant fever within a few hours. Vonne tends to her throughout and does a wonderful job keeping her cool, but I have to take her in again on Wednesday – in Bengal Tiger face courtesy of the painting kit from her Aunt Maggie – for blood draws to see if her catheter is infected (gratefully, no). It seems that Actinomycin often causes short-term fevers, and so the whole thing dies away by Wednesday afternoon.

Emily's Friday (27 Jan) shots at home proceed smoothly, but soon after she stops eating and starts vomiting. We order more of the anti-nausea drug Zofran, continuing its round-the-clock flow via her catheter line to calm her system. That gets us through Sunday morning. Since it's just snowed five inches, I pull Em around the neighborhood on a sled. She has a great time, but then deteriorates in the afternoon, and, despite begging for and trying a variety of bland foods, she can't get anything down. By early evening she's gagging and throwing up again, so we notify Georgetown's doctor-on-call to obtain more Zofran for the following morning.

On Monday, I paint Emily' face as a clown and the two of us head off to Lombardi for another draw, which goes okay. Her white cells are already recovering, but her platelets drop to 29K and the nurses forecast a transfusion after tomorrow's home blood draw if she dips below 20K. Still, our lady oncologist, Dr. Novakovic, believes Em will be up enough by then to avoid transfusion. Biljana has a great feel for these things and more often than not is right about Em-Cat.

I wish our Lombardi day ended then and there, so I could return for a late 8-hour workday, but Em refuses to pee in her attached urine bag _for over five hours!_ We do every children's art project imaginable and endure the entire gamut of freaking-out-in-the-doctor's-waiting-room emotional states. We give up at 3pm – if you can believe it. Em holds it in that long despite drinking a mother-load of juice. As our prize, we're sent home with a jar. Naturally, as soon as she gets home and chills out, Emily walks off by herself and the bag's immediately filled (it's a special capture bad we adhere to her undercarriage, splicing the catch-bag out through her diaper).

Next problem is that our homecare system won't pick up urine alone. If we have a blood draw as well, then fine. But piss alone doesn't rank – apparently. Worse, the lab that does the urinalysis (American Medical Lab) won't pick up either – more idiosyncratic procedures. So I end up driving like a madman through rush hour traffic to two different AML sites in northern Virginia, only to have both close shop right in my face as I dash up. In the end, we refrigerate the pee overnight and I re-deliver it early next morn to the closer lab. I lose a vacation day over four ounces of urine.

Sometimes piss happens.

Emily Update #3 (31 January-7 February 1995)

This round continues to be a problem – platelets-wise. Em started the round at about 300K, but it's cut in half every 2-to-3 days since. She's been lethargic for several days now, often laying down on the floor and holding her head as if it hurts. Then the nosebleeds start again and the large, ugly purple bruises appear all over her body. What's happening is, her platelets get so low that the badly thinned blood actually leaks through her smallest arteries (e.g., headaches, burst blood vessels in mouth, nose bleeds), so she hemorrhages like a hemophiliac.

Tonight (1 Feb) we receive word that Em's platelets are down to a mere 7K, based on a home blood draw earlier in the day. Dr. Novakovic makes the call herself around 8pm, ordering us to Georgetown ASAP for an emergency transfusion. At this near-rock bottom level, Emily runs a one-in-twenty risk of spontaneous bleeding in the skull – fatally damaging her brain. I call Vonne at work and she rushes home. I quickly dress Em and we three sing Disney movie songs all the way in.

We arrive at Georgetown University Hospital at 9:30 and endure a resident who doesn't yet understand the workings of the new pediatric observation unit, where kids can receive outpatient treatment during non-Lombardi hours. You aren't officially admitted to the hospital – so our streak stands! All the on-duty docs and nurses are amazed at our luck to date, but the existence of this unit suggests that we're less an inexplicable rarity than a harbinger of things to come in the era of managed care.

Anyway, this resident makes us jump through all the exam hoops, unnecessarily scaring Em in the process. Then our newly minted doc wrings a detailed case history out of us, like our file doesn't exist or we just decided to come in off the street on a whim. She is definitely taking advantage of her first Wilms' Tumor patient. Of course, we end up fighting the battle of the automatic blood-pressure machine with her. To top it off, she fires a parting shot designed to take us down a notch, deploring the fact that Em's still in diapers. _The horror!_

Clearly, we've just been screwing around as parents (well . . . there is that baby on the way). It's a cheap and unprofessional comment by the resident, who seems only dimly aware of what Emily is going through in reality – as opposed to a case history. Em definitely has control over her bodily functions. She just chooses not to grow in that way right now, and we don't push it since she goes through so much with strength and good cheer. She is amazing to watch, much as she drives us insane on some small things.

To wrap up the story: platelets at 11 and we're out of there by midnight.

Friday's trip (3 Feb) to Lombardi goes well, with Em's blood numbers rebounded enough to avoid another transfusion. Around the same time, Vonne has another sonogram. The word is that Baby is head down but not yet engaged. And no, sex is not apparent. One busy day, but it's all good news.

Our trip to Lombardi on Monday (6 Feb) once again costs me a vacation day, as Em holds her water until mid-afternoon, even though we flood her with a saline line from 10 o'clock on. God, that kid can be stubborn. On the other hand, she does a lot of nifty art and has much fun playing the giraffe – her face painting for the day. Her stick-people drawings elicit a nice complement from art therapist Tracy, who says Em has really good spatial understanding for a three-year-old. She pronounces Em "very advanced," just as I'm on my knees begging the child to pee. Ah well, we each advance in different ways and yet, she has such a chaotic, dream-like approach to her drawings – part Rauschenberg, part Chagall – for someone with such bladder control. And they call me anal-retentive! Perhaps she works well under pressure.

Then, after losing my vacation day and with the urine is finally out (proving her surviving kidney is fine), we get the bad news: Em's absolute neutrophil count (ANC) is disastrously low – from norm of about 3000 to only 75. Once again we jump into the breach of severe neutropenia, where her risk of death from infection skyrockets. Vonne has done a fantastic job of shepherding Em through past such periods and we pray we luck out again. As Vonne reminds, Em's path on this round is exactly what she had last time – namely, platelet trouble and then low neutrophils. So we're picking up some sense of rhythm here, getting a grip, and mapping the terrain.

Right now, our biggest short-term danger seems to be sleep-depravation, and we're looking at an infant in a few weeks! Suffice it to say that, given Vonne's ever-increasing heartburn, Em's nightly nightmares, and my growing tendency to jump out of bed and swing my pillow at imaginary beasts on the ceiling ( _ahem!_ ), we could all use a packed REM transfusion. Unfortunately, many miles to go.

Emily Update #4 (7-13 February 1995)

Well, Emily gets through the week okay with no illness and we expect her numbers to be out of the danger zone after today's (13 Feb) at-home blood draw by Kathie Clemens. Other than some dry chapped skin – from which we all suffer in this very cold weather, she's fine. Nightmares bring her to our room only two times this week, which means things are settling down. She's eating even better and resuming her normal schedule and activity levels. Em-Cat's great joys now are scissors, stencils, using my shoe laces to tie up her toy horses, making horse sounds, and – if the snow returns – sledding with Dad. Oh, dressing and undressing herself is also big now ("Go away Dad!"). She's also gaga over _The Sword and The Stone_ Disney tape sent by Grandma Barnett. "It is a dark, dark age!" she ominously stage whispers every so often. It makes her laugh out loud – a far too rare event.

Meanwhile, we all hustle hard to get ready for Da Baby! I'm working the new playroom in the basement like crazy, while Vonne cleans, sorts, and preps clothes and accessories. Em is excited in an abstract way. She certainly likes the _idea_ of babies, but she doesn't get the whole concept yet. Our whole world revolves around her cancer, so we're a bit nervous about her adjustment – not to mention our own.

Vonne is doing well with the pregnancy. We're still looking at the end of March, but she feels this one will be early. We'll be at Arlington Hospital again and we're already re-practicing our Bradley Method exercises. We'll stay at home as long as possible – just like last time – and then Dr. Tom will assume his bodyguard persona. It's a role to which I've grown accustomed during recent months. It's just that air of pretending-to-be-in-charge that gets me those "Oh Mister Manager!" questions every time I go into Kmart – like I even know the Blue Light special most times!

All joking aside, Vonne continues to do a spectacular job with this pregnancy, which is nothing less than heroic given her 20-plus hours at the store and her exhaustive care of Emily. Her record speaks for itself, but she deserves endless credit for quietly pulling off a double feat that few else could attempt with such skill, grace, and courage. I may play _Rhett Butler_ to Emily's horse-crazy _Bonnie Blue_ , but Vonne is our own _Melanie Hamilton_ made real – day-in and day-out. As Rhett might have put it, she is the only completely kind person I've ever known – a very great lady.

During our college days back in Madison, I used to watch Vonne waitressing at Paisan's from the kitchen where I cooked – kind of a Frankie-and-Johnny thing. Admiring her from afar, I used to point her out to other cooks – before I had even met her! – and explain that that was one woman you'd marry in an instant, if given the chance. No one ever disagreed. They'd all just nod their heads solemnly and then look at me like I was nuts if I thought I'd be the man. It was just so obvious to me then, and nothing Vonne can do now will convince me any further of my great wisdom to finally get off my butt and ask her out on 21 June 1982 – over twelve years ago. The movie was _Blade Runner_. Can I pick 'em or what?

Emily Update #5 (13-21 February 1995)

A fairly uneventful week with one exception: Emily's EKG today (17 Feb). We typically conduct one a week or two before every round of Adriamycin, which damages heart muscle tissue. The EKG assesses possible damage from the last round and gauges her capacity to withstand future doses. If it's bad news, it's a showstopper.

The diagnostic (basically an electrocardiogram plus ultrasound of her heart) focuses on measuring pumping throughput, which translates into a percentage figure known as the Left Ventricular Ejection Fraction (LVEF). Anything over 50 percent is considered normal, and any change from period to period – so long as all numbers sit above 50 percent – is considered a normal variation. Emily scored 59 percent last July (the baseline reading) and 54 percent after the first Adriamycin in December.

During the last EKG Em got very scared. She usually goes ballistic if asked to disrobe and lie back on an examining table. She associates it with terrible experiences and we understand completely, having held her down through all of them. Holding your child down like that is probably the most exhausting experience I've had in this life. I felt peppier after the marathon. Last time I calmed her by repeating her mantra, "Hold still, then it won't hurt so much" (not that the diagnostic causes any physical pain). Em often uses the coping technique of voicing the typical nurse/doctor bedside mannerisms when she herself is undergoing a procedure. Sometimes, though, you just need to feed her the right line to get her rolling.

We drive to a Georgetown satellite facility in Fairfax for the EKG, and I come prepared with all my tricks, including the ever-useful promise of Chicken Nuggets and French fries. Problem is, Em freaks out in the waiting room soon after arrival, and so the jig's up even before it starts. She knows something unusual is going to happen (we tried to tell her beforehand) and screams she doesn't want her coat taken off. Then she makes for the door. Of course, that's when the referral snafu kicks in with the receptionist (the timing always fascinates me), but Em chills after I get her coat off and hold her for a while. Then she recognizes the tech who did her last time in the District and relaxes even more. He has a big hospital bed for her to lie in, so I can get in with her. She cries some anyway, but then summons her usual courage and we're done in 20 minutes. The room is very warm and full of windows, in contrast to the crowded, shut-in motif of Georgetown's pediatric cardiology unit, and I think that helps some. We play in the reception area while the cardiologist analyzes the readouts. The news is good: no drop in throughput, measured at 56 percent.

That's a huge relief. We sweat every EKG, since a negative reading not only signals potentially significant and permanent heart damage, but also calls into question the eventual completion of the protocol. If her heart is hurting, then we may have to suspend the Adriamycin for God only knows how long. It's one of those Russian roulette moments: she's got a one-in-five chance of not making it through and this is a prime opportunity for fate to emerge – _poof!_ – just like that.

Emily is now fully cleared to start the next Adriamycin round and she's free and easy until then, as yesterday's blood numbers are big enough to signal the end of the last round's degradation of her immune system. Our next milestone will be an at-home blood draw on 5 March to check her baselines before the round starts. Lombardi requires Em's neutrophil count to be above 1K. Normality now kicks in at the Barnett house, or as close as we come in this unrelentingly unpleasant process.

Em suffers through the week with a heavy Upper Respiratory Infection, otherwise known as a cold. Worse, Vonne and I are likewise succumbing by week's end. Fortunately, it couldn't have come at a better time. Her immune system has just recovered and she's got some time before her next round. With six more to go, we're really looking at about 60 days (the ten prior to each round) where we tread lightly and pray for no illness so as to avoid protocol suspensions. Once the chemo flows, we just ride that tiger until we fall off.

Of course, death by pneumenopathy (illness) remains her most likely course of failure. So any cold, no matter how small, is treated like a precursor to something worse – typically pneumonia. Em receives an antibiotic, called Bactrim, prophylactically six times a week. It's the same stuff many kids get for chronic ear infections. Before cancer – truly the _B.C_. in our family's lexicon – we would have given Em plenty of Pediacare decongestant and that would be that. Now, however, everything's a negotiation with our Lombardi nurses. Their fear? Masking other symptoms. Even though her immune system recovers between rounds, the regular suppression of her defenses makes her more susceptible even when her numbers are up. Nothing is simple now.

As Dr. Gootenberg constantly reminds, "The past is no guide to the future with the chemo protocol." You can't rack up wins, month by month, and expect that'll protect you from anything lying just around the corner. Your record is worth zero. So what if Em has survived several periods of near zero drops in her immune system! That tells us nothing about the next collapse; the past only tells us about the past. Many of the kids who buy it with pneumenopathy do just fine until they no longer do – and that's that.

Since parents are – by an overwhelming margin – chiefly responsible for avoiding that fate in its initial causality (contracting infection), the pressure we feel is unlike anything we've ever known. All parents feel responsible for keeping their kid safe. It's just usually pursued within the relaxed environment of comfortable optimism about the future: _Oh I did that as a kid too and yeah, I scraped myself up a few times, but I lived. Kids are tough. Don't worry so much!_

The chemo protocol is like a crystal ball; it allows you to see what your future doom will look like. As a political scientist, its effect reminds me of how nuclear weapons impacted great-power warfare. Historians ask whether the monarchs of Europe would ever have started World War I if they could have gazed into a crystal ball and seen what it would unleash. Nuclear weapons did just that for the major powers after World War II. Everyone knew that all-out war would be a disaster for all sides, and so great power warfare was quietly retired over the decades of what later became known as the Cold War.

My point is this: Vonne and I have been given this crystal ball that tells us what periods of great danger lie ahead for Emily. Being forewarned creates so explicit a responsibility that one feels the finger of guilt preemptively pointed – _I'll not go down in history as the parent who got his first-born killed!_ Toss that on top of the subconscious guilt any parent feels when a kid gets cancer, and it's easy to feel like a complete loser every day of the struggle – like you deserve it.

I remember looking at Em's skin while she took a bath last May. It was totally unblemished, not a scratch, perfect in every way. At the time, I thought of the many scars I've collected along the way, and wondered how long we might spare her. I thought about that image a lot last July, when each day in the hospital brought some actual or threatened new effort to carve up her little 29-pound body – deciding how much they could safely leave before subjecting it to radiation and chemo. I cringe every time I look at her body now – with its freak show scars. That's how guilty I feel.

Speaking of radiation, our second-in-command oncologist Dr. Novakovic passes along some medical studies of long-term survivorship (LTS). The thing to remember with LTS studies is that you're looking about 25 years into the past – like the Hubble telescope looking backward in time by searching out light that's traveled for millions of years. The publishing period puts you back about 2 to 3 years, the study itself is 4 to 5 more, and the LTSers are 15 to 20 years past treatment. Add it up and it means the treatments you're evaluating data from the mid-to-late 1960s, when, of course, the state of the art was a whole lot less sophisticated than today.

Point of story: Em gets about 1200 rads and lung tissue can handle about 2500 before serious trouble results. She also gets it in fractionated doses (like suffering numerous light sunburns versus one big nasty burn), which helps even more, but how much we're not sure since that LTS data isn't here yet. Emily is part of the next generation on that one. The dangers are as follows: diminished lung capacity, fibrous growth in the lungs, reduced lung and rib cage development (lungs aren't fully developed until age 7), and curvature of the spine (scoliosis).

Some sense of the trade-offs, yes?

For now, Em shows no dramatic long-term effects in thoracic (chest-area) development. The trauma we see in the lung diagnostics is a normal short-term reaction to the radiation, and it should go away with time. But again, this tells us little about the radiation's long-term effects on her lungs, heart and right ovary. It just makes us feel better right now, and the longer we don't see anything, the better we feel. The fact that one ovary remains unradiated is crucial. In the future, Emily can draw exclusively upon the eggs from the shielded ovary to work around any potential damage caused by radiation. Nothing guaranteed, mind you, but nice to know because we're in this to win every single battle possible. Cancer is an implacable foe seeking to inflict maximum damage. Thinking from a gaming perspective, our strategy focuses on _minimizing our maximum losses_ – on every level.

People often ask how Em handles all the chemo shots. The answer is quite well, because of the permanent catheter, known as a Broviac, placed just to the left of her right breast nipple. All the drugs go in through its two IV lines, and all of the blood draws come out through those same two lines. It's that simple and neat, despite the inherently ghastly nature of having this latex tube sticking out of a hole in her chest, which in turn constitutes an ongoing open wound close to two important organs – her heart and her lungs. In fact, once inside her body, the catheter's internal line travels – just under her skin – up the right side of her neck, and there enters her jugular vein upstream from her heart. The end of the catheter lies just short of her heart.

The site of the catheter's entry into her chest has by now largely "healed" over, or more accurately, the skin's constricted around the catheter line. The Broviac has a special fabric cuff that anchors it just under the skin, making for a reasonably tight fit. This central line runs out from her chest about four inches to a splitter (like a cable splitter), where it separates into the two lines. Why two lines? Redundancy is good, plus the second one is for use in heavy-flow hospital situations. The lines, which Emily and we refer to as her _tubes_ , have built-on clamps (like on IVs) and end in a hard plastic, tube-like cap, upon which is placed another tube-like structure capped by a special polymer seal, through which needles can be inserted on a repeated basis without damage. We replace these polymer caps (called lumen or injection sites) every week.

We give Em a shower every two days, before which we strip off the elaborate bandaging covering the entry site and after which we perform a sterilizing routine and re-bandaging of the site. As Vonne has grown great with child, I've assumed this duty on an exclusive basis.

Typically, on those nights Em and I head upstairs around 8pm. She gets undressed, and then I take off her protective vest (more on that later) and remove the bandage scheme. Then off to the shower, where I scrub her down with antibacterial soap. After we towel off, I put on her special bathrobe (always freshly laundered) and lay her on our bed. She watches a half-hour video as I go about my business. This set-up works well by distracting her and getting her to turn her head away from the site, diminishing the chance she'll infect herself by breathing on it.

The Broviac maintenance process starts like this: first I scrub the site and tubes for any old gummy residue from the various tapes we use, wiping it all down with alcohol preps. Then I draw up two 3-cc syringes of Heparin Lock Solution (blood thinner), wipe off her polymer caps (replacing if necessary) and flush both tubes (one shot each). These syringes feature wide-bore plastic "needles" (known as _cannula_ ), which are specifically designed for the polymer seals. The whole scheme is known as the _needle-less system_.

Many hospitals are moving in this direction (the polymer seal, for example, is a cutting-edge advance) for obvious reasons – namely, it cuts down on accidental _sticks_ by which medical personnel can become infected by such things as AIDS. By the way, many AIDS patients have catheters like Em's for the same reasons: avoiding painful shots, reducing abuse of veins, bypassing the danger of toxic chemicals spilling through veins and causing chemical burns, etc. In Em's case, the flush shot simply cleans out the tubes so they don't clot up between uses. Em often pushes in the shots herself as part of a game we play. But usually she tries to zone out and lie still for the next part, when I clean the site itself.

After scrubbing down my hands, I pull out a pair of sterile gloves wrapped in paper from a sealed, sterile package. I open up the paper wrapping and lay the gloves aside for later access. Then I use the sterile package as my _sterile field_ , upon which I break out a 2X2-inch gauze, a 2X2-inch IV gauze (slit to go around the line), and a glob of sterile, anti-bacterial ointment. These items sit in the sterile field while I also prep containers of Betadine swap sticks (red stuff nurses wipe on your arm before drawing blood) and alcohol swab sticks. Through all this, I touch nothing directly, and lay everything out so I can later access them without compromising sterility. Tricky, but it becomes second nature quickly. Concentration is key.

Before getting down to the real work, I put on my gloves all sterile-like (very doctorly and with great flourish). Then I use the Betadine sticks to clean the entry site three times in a row, employing a circular-wiping pattern moving outward from the site. I wait a minute while the _special soap_ (Emily's term) dries, and then I wipe it off with the three alcohol swabs, leaving Betadine immediately around the site. Next I take the Betadine gel and slop in on the entry site directly. Then I apply the IV gauze sponges, loop the tubing at the site (creating a safety margin of slack in case the tubes are ever pulled) and place the 2X2 gauze sponges over the loop. I place two wide pieces of cloth-like tape over the entire bandaged area. What sticks out of the bandaged area are the two tubes beyond the splitter, itself well anchored under the tape. The tube ends are _flagged_ with medical tape (i.e., wrapped like a flag on a pole), thereby allowing them to be clamped to the inside of Em's vest.

Emily's "vest" is really a section of Spandage, a spongy, web-like bandaging fabric that's placed around awkwardly positioned wounds (e.g., head, shoulder, hip) and under casts. It comes in a box in 10-yard strips. We simply cut a length of about 18 inches, cut holes for her arms, and then pull over her head like a funky tank top. Her tubes are clipped to the inside of the vest by a _bulldog clamp_ , keeping them snug up against her body and out of harm's way. The vest also protects the bandage site by providing an extra layer of bandaging. Em wears the vest at all times, except for showers and dressing changes. Happily, she's never fought this.

There was a period in the fall when, after we'd put her to bed, she'd secretly – but carefully – rip off her bandages and pile them neatly on the end of her bed. We couldn't tell if this was a protest or curiosity, but she always seemed profoundly sad after doing it. For some unknown reason, she stopped doing it after Christmas.

Point of this detailed explanation: Em feels no pain with injections. She had her last intravenous blood draw in the hospital in July. She's received three subcutaneous shots of a blood growth factor so far (Vonne and I did one each – pretty strange to learn!). Thanks to the permanent catheter, Em avoids literally hundreds of painfully long and physically dangerous needle sticks over the course of chemotherapy. Knowing that, it's hard to imagine life without the catheter, as horrible as that sounds and especially since it's very existence poses a significant – but controllable – danger to her survival. It's a Faustian bargain in the truest sense, but worth it.

For now, we've not encountered any serious problem with the catheter, technically described as a _7.0 French, double-lumen Broviac catheter_. There are several safety measures built into the design, which is good, since it's basically an access tube that runs right into her heart. The maintenance routine has never been a problem. So, as long as we remain hyper-vigilant about the procedures and follow the rather sensible restrictions on her behavior (no football, wrestling, kick boxing, etc.), we keep our deal with this devil. To our credit, Emily has never contracted a catheter infection, which is: 1) very dangerous – as in potentially fatal; 2) takes a long time to cure, to include hospitalization; 3) usually results in removal and replacement of the catheter, necessitating another surgery; and 4) invariably suspends the protocol big-time. Again, vigilance matters – 24 hours a day, 7 days a week, 365 days a year.

On non-shower days, either Vonne or I perform the tube-flushing routine. We can do either the flushing or bandaging routines in our sleep. We joke that we'll have to resist always looking for the new baby's Broviac once he or she is born. Once I actually found myself checking a friend of Em's for one after he fell down on his chest – it's that reflexive. It all seems so normal now, despite its bizarreness. Once, when Em fell off a swing at a local park, a lady helped me pick her up. For some reason, this woman felt obliged to pull up Em's shirt to check for bruises. Before I could stop her she caught a good look and then – with dramatic gasp – grabbed her kids and left as though she'd stumbled into an episode of the _X Files_. I was tempted to screech after her, _They'll be coming for you next! You can run but you can't hide!_

We can't wait until the catheter's removed. I dream about it regularly.

_Whew!_ That's a lot of detail. I write it all down simply to document it. If Em survives, she'll have many questions about this whole experience ( _How did I get these scars here?_ ). Imagine conquering cancer and not remembering much about it!

This threat will hang over Emily's life like Damocles' Sword. She'll need much self-reflection to deal with this. Self-reflection requires knowledge, and knowledge requires information. These e-mails thus serve as an archive. My long-distance running partner had advised me from the start that this'd be a good thing to do. Our social worker said as much. But I could never bring myself to do it until recently. I feared getting too detached, like I was – literally and figuratively – writing her off. At first, I could only imagine the memoir as a way of remembering the dead.

Vonne is more literary than I, and eventually will write some beautiful things – probably poetry – about this down the road. But naturally, she's too busy right now with her pregnancy, which remains a stunning achievement to date, given everything else. Vonne has been simply tireless, but likewise often deeply tired. Nonetheless, she remains my co-source of everything I get down on paper.

Emily, understand that your Mom wrote these updates as much as I.

Some tidbits: Emily is losing her hair again – routine to some but still visceral to us. It sets her so far apart from other kids. Many are scared on sight. Adults are visibly shaken when her hat falls off and they see her bald. Even with a hat, she has an eerie look about her that most people catch. You know, people always used to stop us in the mall and say, "What a beautiful child!" Her golden hair, beautiful visage, and sparkling personality always made people respond so positively. They still do most of the time, as all that still remains – save the hair.

But when the hat hits the ground, how things change! Some stare at her as though they just saw a dead person. It's a chilling experience, to say the least, one we'll never forget.

It has to affect Em some. She can't help notice the change. Now, she reflexively puts her hat back on if it falls, where before she always tossed it dramatically in crowds, like she was Mary Tyler Moore. She even puts it on inside the house when she comes up to the door and she knows people – especially other kids – will look at her. When it's just us, though, she's completely unconscious about it.

We had thought only the Adriamycin kills Em's hair. So we got used to it growing back marginally between those rounds. But this last Actinomycin-Vincristine round shaved her clean again. Each time it comes in, it looks browner. I myself lost my golden hair around age five. It'll seem symbolic if she goes out as a blond and comes back a more somber brunette, although I've sworn off dire symbolism after we cut down our dying front-yard tree last August.

Picking up that ominous yarn: we later found out the tree had a fatal disease called fire blight. So one hot day my father-in-law Carl helped me chop it down. It was a symbolic surgery where I worked out a lot of rage on the trunk with an ax in a late afternoon thunderstorm. Still, I never wanted something so dead in all my life – except for Emily's cancer. Seeing the trunk prostrate gave me the same dreadful satisfaction as seeing Em's cancerous kidney cut open on the table in pathology. All I could think was, _Fuck you!_

Technology update: we got a pager. We've resisted until now, despite the advice of other parents and the peds onc nurses. But then we found we had too many tense times when I couldn't be reached, or when we fretted over baby-sitters getting ahold of us in theaters, etc. Between Vonne's pre-natal stuff and all of Emily's things, our schedules remain beyond hectic. For $9 a month, to hell with worry!

Emily Update #6 (21-27 February 1995)

Having vented much angst and bile during last week's update, this week's is full of good things about good people. Happy, happy, joy, joy! Any week _The Brady Bunch Movie_ debuts is definitely _O-tay_. Life is a cornucopia of – as Peter might say – "pork chops and applesauce."

But alas, I teleparabolize here. Yes, the word is spelled correctly. I got it from my new _Gen X_ dictionary (okay, so I'm 32 – sue me!). It means to interpret life through television shows popular in one's youth. An example? Every time my pager starts vibrating on my belt, I have the strange desire to grasp it, twist in agony, and tilt my head back in the anguished scream of _Star Trek_ 's Captain Kirk. I dunno, it just seems like it deserves an agonized reaction, as though the Providers are punishing me for challenging their authority on this planet. I can almost hear the soundtrack as we fade to commercial . . . _Daaa . . . Da duh da duh Ta daaaa! Wha naaaaaaaah!_ ). That, my friends, is teleparabolizing.

Details: Em is starting week 31 of 65, with 34 to go. End date is still 27 October. Thirty-five shots down and 30 to go. All is moving forward to the 6-8 March date with Adriamycin. We'll do an at-home blood draw on the Sunday prior to cut down on our time in Lombardi on Monday. We'll also try to collect the urine at home to avoid any lost vacation days. Em-Cat will get the Tuesday and Wednesday doses at home with the aid of our new trusty IV pole.

Dammit Jim, I'm a doctor – not a coat rack. Get somebody else to hold this saline bag!

Oops, I did it again.

So many people to thank for so many things. Of course, we thank all who pray for Emily. That counts a lot with us. All in all, we've been blessed with enormous support. When we thank people for care packages and phone calls, we're just scratching the surface of an impressive network. The outpouring humbles us.

This support also helps us to remember where we reside in _Cancerworld_. We've met plenty with worse insurance, less supportive families, nastier cancers. Although Vonne has worked with the elderly, this is my first experience dealing with people close to or clearly on their way to death. It's hard to tell who hurts more when children are involved – the fragile kids or their even more fragile parents.

I'll admit to conspiring with Vonne to get as much done at home in advance of mandatory visits to the clinic. Time in Lombardi is no fun, despite the great staff, art therapists, social workers, etc. It's a sad place to meet kids who should – by anyone's standards – have a different and better life.

Some peds onc patients are seriously deformed by their cancers, even though you can still see sweet little kids underneath all the damage. They all talk of Disney World. Some go as their crowning achievement, others for one last fling. You wonder who won't be around this time next year, and whether any parent might be thinking the same of your kid. This is why we get Em all pumped up before she goes in, paint her face as some exotic animal, dress her to the nines, and then blow in and out as though making a personal appearance instead of submitting to chemotherapy. For now it's worked, but it's amazing how our insomnia returns just before the round, and how Em's nightmares keep pace.

It's strange but illuminating to spend time with other parents at Lombardi. I'm sure most are quite normal in normal times, but we're a rather nervous and obsessive lot, especially at the clinic, where the tension is so thick you can cut it with a knife. Still, many keep it under wraps pretty well. Ah well, we all try to be on our best behavior there. Gotta be strong for the kids.

Vonne and I have spent enough time there to know we're not the types who'd benefit from support groups. It's mean to say this: but we can't take on all their stories if that's the price to share ours. It feels close to a full-time job dealing with Em's cancer, keeping our marriage strong, plus bringing this new life into the world. As we're often reminded, three out of four marriages dissolve in this crucible. At first, you blink at those numbers like a mirage, but then anecdotal evidence piles up around you – all the broken marriages in _Cancerworld_. We've just decided this is a time to be selfish. Maybe we'll find such groups useful later on, but not now.

The fact is Emily's cancer _is_ rare. There's approximately 400 cases in the US each year, with hers being the first at Georgetown _in a while_. Her advanced-stage diagnosis puts her in even more rarefied territory – forty or so cases a year. Toss in the details of her diagnosis (lung metastases spotted only by CAT Scan), and now we're down to about 5 cases a year. If Em were leukemic, like the majority of Lombardi kids, then support groups might make more sense to us. As it is, we hoe a different row. This isn't a bad thing per se, since a certain amount of notoriety can be a useful tool with large medical bureaucracies. Still, beware of gawky residents!

Now that Em is relatively famous among the Lombardi crowd for her painted faces, there've been suggestions that, "You guys could get a nice magazine article out of this!" It's a strange thought, one we reflexively reject. We understand that individual parents deal with this experience in different ways, as do kids old enough to understand cancer in some mature way. But Em is too young for all that. It takes all the courage she can muster to get through everything she must. Her attempts to please us in this manner often flash flood our eyes with tears – an involuntary experience of such intensity that it shocks me every time it happens. We have a potty video where the psychiatrist says that the child's desire to emulate is the parents' greatest asset at this age. Em-Cat may not be potty-trained yet, but she's got nothing left to prove regarding her commitment to our general cause.

It is precisely Emily's commitment that we need to respect. Last fall we let a documentary crew film her some one day at Lombardi (despite Nona Vonne's attempts to shoo the camera away), but that was just an accident of timing, plus it involved helping the great cause of the art therapy program. The clinic's bulletin boards are filled with local media stories on this or that kid "struggling on" and using some artistic outlet as a coping mechanism.

We've never known how to interpret such coverage, but our instincts are that Emily and no one else ultimately own this cancer. It's our job to protect her spirit as well as her body, and thus we need protect her ownership of this experience. For now, it's her battle and hers alone, despite all we do as parents. Like all profound life experiences, it'll eventually be hers to do with as she pleases or needs. We can provide the tools for her examination and processing of this experience down the road, but this story can't be appropriated from her – no matter how good the cause.

More practically, if I started thinking that way, all the honesty in these updates would go right out the window. No matter what happens, I play this absolutely straight. These updates are neither _writing her up_ nor _writing her off_. We just want to be _unalone_ – right now with family and friends, and down the road with the adult we hope will be Emily Vonne Barnett. We need that future woman here with us – right now. Someone to whom we can explain our decisions. Someone who'll understand the difficult choices we make now. Someone who'll forgive us for being so hard on her so many times, pinning her down during painful procedures, whispering cruel words in her ear when promises don't work anymore and threats ring hollow. Someone who can grant us absolution – retroactively. Someone who'll love us anyway.

Last July we went into Georgetown with a disaster but came out with a lifestyle. Yet, as much as Vonne and I are caught up in this affair, the experience is really Emily's – first and foremost. We're able to process so much of this experience with our adult minds, but in our efforts to keep everything so peaceful and safe around Em-Cat, it's likely she's processed far less of it. We've decided not to make the cancer a big, real-time learning experience for her. She's got plenty of other things to master in her life. Plus, we decided early on that her overall good health and high spirits not only fell primarily under our purview, but also represented her greatest assets in the battle that lay ahead. Thus her processing of this experience must wait, as we do our best in the meantime to keep the protocol free of distractions.

Someday Emily will reach a point in her life where she can deal with her cancer comprehensively. When will that be? We have absolutely no idea. Maybe next year. Maybe long after we're gone. Whenever she asks for it, she'll be given as much as she can handle under the principle, _Either tell her the truth or let her invent far worse explanations_.

Despite my babbling, don't be confused into thinking for a minute that we know what we're doing here, or how this all comes together in some big picture. We were just offered a scratch for one of many itches, and right now – right away – we reject it. Does that change with time? What the hell hasn't in this horrible process? How may it change? Again, no idea. We'll say yes to one thing and no to another just based our appreciation of the here and now. We don't live in a world of tomorrows, only todays. This is the selfish time. We're _on the take_ – not _on the give_.

All this blabbing just because one lady mentioned a magazine article. Thank God she didn't say a movie deal, or this update would never end!

Is Emily developing okay despite the cancer and all the treatment? All signs are _yes_ for now. It's true that she spends more time alone than the average three-year-old does, and that she's behind on several things, such as potty training. But Mom and Dad are the types who feel great guilt if Em's day is not one long pre-school-like session of skills training and enrichment experiences. In general, she gets just enough exposure to the usual things for her age. She spends plenty of time outdoors, albeit in a secluded manner. According to early childhood professionals who interact with Em on a regular basis, she's normal for her age and reasonably advanced in enough areas (especially verbal and memory) to be considered bright. They tell us not to worry. Em is a nice kid who's relaxed when meeting new people, and those people instinctively like her – including kids. Whatever Em misses out on now she'll make up later with ease, or so we tell ourselves.

It's during these off-periods that Emily seems so normal, so much like before. Yet even here our lives are crowded by medical events. This quick week sees both the EKG and an appointment with her regular pediatrician. By the way, Dr. Javedan says Emily looks great. She's in the 75th percentile in height and 50th in weight – nice, normal numbers. Life does go on.

Emily Update #7 (27 February-6 March 95)

Emily makes her very first visit to the dentist on Wednesday (1 Mar). Our pediatrician has strongly advised this, as chemo can dramatically impair oral hygiene due to the mouth's many fast-growing cells. To protect Em on the eve of her round, Lombardi has us give her heavy doses of a special antibiotic just prior to, and immediately after, the exam. The dentist says everything looks good for now, but he wants to see Em every three months through the chemo protocol. He warns us that serious problems can erupt overnight due to the chemo, so we're instructed to brush her teeth at least twice a day and to rinse nightly with a special anti-bacterial fluoride mouthwash. We're also supposed to keep a close eye on her mouth and bring her in immediately if anything looks odd. Something else to worry about, and yet, as with so many other potential side effects, Emily is doing amazingly well so far – knock on wood. She's pretty brave during the exam and teeth cleaning, and the techs really go out of their way to treat her like a star. Even better, the dentist displays a serious knowledge of cancer treatments, so we feel very good about the whole experience.

Vonne has a pre-natal check-up on Thursday and the news makes Dad's spackle knife and paintbrush move faster – the midwife touches baby's head! Another bald kid waiting in the wings! Vonne is already one centimeter dilated, and the baby has – as they say – dropped. The news definitely dials up the excitement level in the house. Em is furiously attempting to try on every piece of baby clothes she can lay her hands on. Apparently it's her way of dealing with the anticipation.

Emily engages in her usual, pre-round-week stuff: demonstrating high energy, eating like a pig, and, unfortunately, ripping off her bandages almost every night. On the last point, it seems she's just fiddling, as there's no accompanying angst.

Our nerves become more frayed as the round approaches, but we have plenty to keep us busy in the days leading up to the 6th. Nona Vonne arrives for a well-timed visit, and, as usual, airlifts gallons of spaghetti sauce in her carry-on luggage. A flurry of orders goes out to Caremark, our homecare provider, for new supplies as we gear up for our nurse visits. Meanwhile, I've been slaving away in the basement on our future family playroom. Home projects wait for no man, baby – nor cancer.

Em-Cat stays busy with her new trike, keeping us all on our toes as her steering can only improve. As with all things Emily, once started, she focuses on the new skill like a laser until she gets it right, and then it's all, "Go away and leave it to me!" Emily definitely exults in these brief moments of independence – no procedures, no IVs, no Nothing Per Oral. Not that the child ever drops out of character, as demonstrated by her flawless readings of "I love you Daddy!" delivered immediately after ramming her trike into some antique furniture. Oh what the hell! It only makes sense she uses every trick in her bag during a fight like this – _especially_ on us.

Caremark's weekend nurse performs a blood draw in our kitchen Sunday afternoon. We likewise manage to get some pee out of her. Both are picked up by a courier service around dinnertime. This is our first time doing all these pre-round collections at home. It should make tomorrow's clinic trip a whole lot easier.

The following morning (6 Mar), Emily starts the third-to-last round of Adriamycin. This begins week 32 of 65, with 33 to go. After this round, five remain.

Nona Vonne volunteers to come along with Em and I to the clinic. We get word from Lombardi during breakfast that Em's blood numbers are big, plus her urine looks good. This round is a _go_. After some debate, we paint her face up like a Bengal tiger – an oldie but a goodie. Traffic is fast, so we spend some time in the clinic playroom before the staff turns up. We get an IV started at about 10:30, and run the Zofran by 11:00. The Adriamycin shot takes about 10 minutes. Adriamycin looks just plain scary. Its florescent, orange-red color makes it look like some B-movie prop.

While at the clinic, Dr. Gootenberg has me speak with a young researcher from the National Institutes of Health (NIH) who is working on Wilms' Tumor. Dr. Joe asks me to recount our discovery of the disease. Because Wilms' is so rare, most researchers have little access to actual patients, and since they're all pre-school, only parents can relay substantive info. Well, the medical jargon starts flying once I launch into my standard spiel. The NIH doc is particularly fascinated with the small tumor on the end of Em's kidney. He agrees that we were immensely lucky to have seen it under her skin. That part of our story still knocks Vonne and I for a loop every time we think about it. _Emily never would have seen her third birthday._

Once back home, we're on the Zofran clock. As with all rounds, Em takes this anti-nausea drug 24 hours a day. Actually, we give it to her over 25-minute blocks three times a day. We get a supply of these IV packs from Caremark at the start of the round. They look like a woman's breast implant – a circular bag filled with a clear liquid and an IV tube running out of it. We keep them in the fridge and break one out several hours before the dosage is due. If it's cold, it takes longer to go in.

Administering Zofran is pretty simple – by design. First we attach a special plastic needle-adapter onto the end of the Zofran line. Then we prime the IV tubing, or let the liquid pass down to the plastic needle. Finally, after flushing Em's red catheter line (the wider of the two), we screw on the needle-adapter – like a nut on a bolt. The Zofran pouch sits in this high-tech, hard-plastic "can" that's shaped like a cold cream jar. The container's screw-on top features a spring-loaded compression mechanism that squeezes the pouch at a constant pressure. Once we unclamp both IV lines, the pump runs without any hands-on attention. There's a small indicator on the bottom of the pump that let's us know when the pouch is empty. We wrap it up by clamping Em's line, detaching the pump's IV, and flushing the catheter tube with both saline and Heparin. The pump kit goes by the name Sidekick. Cute.

Three such procedures every 24 hours, plus the requisite flush of the white catheter line, and we're drawing up 10 syringes every day during the round. The Sidekick is quite portable. Em puts it in a little "purse" that hangs around her neck and goes about her young-kid business. We've actually gone to the playground with it running. More often, though, we do it while she's asleep. I start the pump at 6am when I get up, then detach it after I've showered and gotten dressed on my way to work. Vonne does the mid-afternoon dose, and then I do one around 11pm before going to bed. Very neat system, and the drug's been a godsend in keeping Em's distress to a reasonable level. With it, she still can't eat but she only occasionally vomits.

A strange thought, but I like the chemo rounds better than the breaks. I feel happiest when drawing up syringes. I feel connected and useful, like the battle's being engaged and the tension and worrying count more. I feel progress and action. I think that's why Vonne seems happiest when our wonderful homecare nurse comes. It's not just the friendship Kathie offers, but also the sense of accomplishment that her visits represent. Strange, but Vonne and I seem most at ease during the worst points, like the midnight dash to Georgetown for platelets. Neither of us would have missed it for the world – a strange highlight for a strange year.

Even scarier thought: some day we'll miss all this excitement and drama, even as it drains us badly and poisons our souls. This is _life_ – with a capital L.

Now I know why my Mom never watches certain TV shows or movies because of past events with her kids. I've brought myself to watch _Chicago Hope_ once and _ER_ twice. Vonne's less squeamish on the subject, but I get too wound up watching medical stuff right now. We both just finished an early Michael Crichton novel about abortion, written in 1969. The book starts with a detailed description of a lung biopsy, which took me back to early July with a jolt that left me gasping. The one movie that really got me recently was _Star Trek Generations_ – of course! The scene where Captain Picard describes his grief over his dead nephew really broke me up because he contemplates all the things the child would never experience in life.

That image reminds me of a spooky dream I had last summer, just days before the diagnosis. Vonne and I were both a bit unnerved by it. I had the dream the first night Emily and I spent in Boscobel on that fateful trip. Perhaps it's being home, but I dream about a man who comes to me and says he can guarantee Emily lives to be 30 years old without any harm happening to her _if_ I make the following pact – I forego the experience of living the next 28 years. As far as I will know, time progresses immediately to the point of Emily's 30th birthday. She and everyone else experience time normally, but it's gone for me. I'm told I can research those lost years and discover whatever I can about what I did and experienced, it's just that I must skip living them. This is the trade to guarantee Emily lives to age 30. I think, geez, this is one strange offer, but what parent won't seriously consider it? In the end, I say yes and the dream ends with me feeling good that Emily's made it that far without harm, that somehow I've fulfilled my parental duties. Looking back, I can only imagine that being home made me think of what it is to be a parent for the long haul – the fears that never go away no matter how grown up your kids are.

Two odd bits from the mass media recently catch our attention due to Emily's cancer. The first is a profile by ABC's _20/20_ of Caremark, our homecare provider. It's about alleged Caremark kickbacks to doctors for signing up elderly patients, as well as the alleged exorbitant costs of medical supplies that Caremark supplies.

Needless to say, next morning I'm on the phone to Caremark and my HMO. First off, all Humana patients go to Caremark, so kickbacks can't be an issue here.

Second, on the cost of drugs and supplies, our HMO has a fixed-fee contract with Caremark, so we get whatever we need from them. If Em ends up costing more than the average chemo kid costs, then Caremark eats the difference and factors her data into their future negotiating figures. Caremark's patient rep, Chuck, is aware of the profile and naturally feels it's one-sided since it compared Caremark's drugs and supplies to those of the cheapest discount drugstore, point being that we pay extra to have it all available and deliverable to our door on a short-notice, 24-hour basis. Another point to consider: when compared to hospitals or clinics, Caremark costs a lot less. That's a more illuminating – and fair – comparison.

For us there's no big issue here so long as Humana is happy with Caremark and all bills are paid on time. We've been very happy with Caremark to date. The supplies are fine and are readily delivered. Nurses Kathie Clemens and Margie Halverson are great. The convenience of avoiding trips to Lombardi for minor things is _huge_ , not to mention the constant danger of being exposed to sick kids. All the proof we need is that we've kept Em free of major infection and out of the hospital so far, and Caremark has been a tremendous asset in this effort. We can't imagine the whole ordeal without them.

The other media item is spookier: a _Journal of the American Medical Association_ (JAMA) article on possible links between pesticides and pediatric cancers. We had the house done up for termites last spring – a few months before Em's cancer. They drilled the foundation and basement floor and pumped in the anti-termite stuff, but nothing where any one of us was exposed to active pesticides (defined as being still wet) since it was all underground. Standard stuff for around here, where cancer rates are normal, termites are very bad, and we live in the middle of old woods. Still, it sticks in the back of our minds since Em's diagnosis.

We check it out and feel vaguely better, but basically because our ignorance is bliss, because nothing about how Wilms' starts is clear. First, the _JAMA_ article doesn't relate to Em's particular cancer (too rare). Second, these studies are frustrating since they're all about tenuous linkages – namely, higher levels associated with direct exposure. That's as far as it goes in these studies: they pinpoint one aspect among thousands in a normal life and then declare a significant association with increased risks. _Lions, tigers, and bears . . . oh my_! Problem is, there's only about ten thousand other intervening variables to consider. So what to do? Never eat hot dogs? Throw away your cell phone? Avoid them ruby slippers? Third, the details of the termite stuff put us in the clear: no direct exposure. The pesticides in the story are those sprayed broadly in yards where kids play. Anyway, our oncologists see no connection, since Em's cancer is congenital in origin. We haven't heard from the geneticists yet, who supposedly still work on our case, but all their questions were about the mother's exposure to chemicals during pregnancy and Vonne had none. Not wanting to drive off on any useless guilt trips, we let the matter drop for the near term until we hear more from the geneticists – those paragons of vagueness.

Still, explanation is in order to make clear both our desire to learn more and our frustration with how little the doctors know about Em's cancer. Wilms' Tumor was discovered in 1889 by a German doctor named Wilms (duh!). Until the advent of chemo in the late 1940s, it was universally fatal. The distribution is equal by sex and race across the entire world, which is very unusual. It strikes overwhelmingly by age five, usually starting around age two. It's now the most well understood cancer in terms of knowing how to kill it (success rates approach 95 percent for lower-stage cases), but knowledge as to how it starts remains incredibly murky.

Doctors now believe that most Wilms' kids suffer from _nephroblastomitosis_ – a condition in which fetus-like cells abound in the kidneys until about age 5. _Fetus-like_ means they divide more rapidly than normal cells, placing them closer along the spectrum to uncontrolled cell division – otherwise known as cancer. Doctors think that perhaps a large percentage of kids have this condition. The ceiling percentage is a guess since there's no reason to go checking out large numbers of kids about such a rare cancer. However, they do know this: everyone has a special gene designed to suppress uncontrolled cell division of such kidney cells.

So it comes to this: doctors don't know how nephroblastomitosis leads to Wilms' or why the suppressor gene sometimes fails, or what combination of those possibly triggers cancer. Only a tiny percentage of Wilms' occurs among siblings (1-to-2 percent), so doctors believe the genetic link to be very weak. Yet, no environmental causality has been found significant either. Vonne or I may have a _bad_ , or defective gene bouncing around in our families, or maybe we both do. But since none of Em's sixteen cousins have had Wilms' and most are past age five, this line of reasoning likewise seems weak. Neither family can recall a Wilms' case – ever.

Another theory says Vonne or I may have a gene that was damaged in some freak accident – the stray gamma ray. In my mind, that launches us into the stratosphere of chaos theory: the butterfly in China flaps its wings, the bolt of light strikes me, and Em gets Wilms'. Unfortunately, that's the state of knowledge right now. We guilt-trippers typically want the answer so we can assume blame, but no one has any to offer, and possibly never will in our lifetimes. Em got a one-in-a-million cancer and no one can tell us how. I suppose that only makes sense.

From the start of Vonne's pregnancy, both the geneticists and oncologists have made the point of saying that we should be very happy to have a second child. That child may have a slightly above normal chance for Wilms' (say, 1.01-in-a-million) and we, along with our pediatrician, will take suitable precautions during his or her early years. Of course, the odds of us having two cases of Wilms' are astronomical – until Em gets it and then it's just 1-in-50. Believe me, hitting the daily double seems less fantastic once you've struck the jackpot.

Speaking of things we can't stomach makes me think how compulsive we suddenly are about following any story where the kid needs the transplant . . . or the bone marrow, platelets, blood . . . or the insurance to pay for any of these. It's a morbid fascination, since we fear being drawn into such a drama ourselves.

I knock on wood more than a termite inspector.

I donated platelets again this week. When I started doing it early last year, I had no idea how close to home the issue would someday strike. The process, which takes about two hours, clearly carries far more meaning for me now. It's no fun to lie around for two hours with a big-ass needle in your arm, though you get to watch a video. Frankly, I take my relaxation where I can get it. Still, as we know from Emily, this stuff is a lifesaver in many instances. Since platelets have a short shelf life, the Red Cross typically knows where it's going by the time of donation. It's often a kid exactly like Em – fighting cancer. Our girl has received two platelet transfusions so far and both were serious situations. I've donated afterwards each time, both to pay back the system and because it makes me feel good.

Enough for now. Remembering our sober rule of thumb – _last round's floor marks the next one's ceiling_ , we steady our nerves for the inevitable decline. The roller coaster approaches the top and – as always – my stomach tingles in sick anticipation.

Emily Update #8 (6-14 March 1995)

That first day of the round is always so anti-climatic in terms of Emily's immediate reactions – thank God. If anything, Em's nervous energy gets the better of her. This time around, she's a wildcat who runs Nona Vonne ragged until finally coaxed into bed around nine. Is this significant? You bet. Putting aside the scary question of unseen damage to the heart, plenty of kids suffer serious side effects soon after getting Adriamycin. The oncologists are always visibly pleased at how Emily breezes through the actual shots. Naturally, each time is a new chance for disaster, and we remember that this is a cumulative process that grows worse with time. Yet every day we escape is one less day to die – from a mistake, a stray virus, or the invisible clock simply running out. We're marking time – gratefully.

From day one back in the hospital we're told that Em's overall strong health and boisterous spirit are her greatest assets in this long fight. If there is one thing that Vonne and I are proud of, it's how we've preserved that asset base so far. Em-Cat is running into a stiff wind throughout, so her capacity to persevere with a positive outlook remains essential to her eventual cure. Again, surviving Wilms' is surviving the cure. It's kill or be killed, all right.

Emily takes the Adriamycin at home today (7 Mar) just fine and continues to eat normally until bed. The Zofran is working its usual magic. We know how important that magic is, since the two times we didn't use it during last summer's radiation sessions were the two times Emily suffered prolonged vomiting bouts. The null hypothesis has been proved beyond the shadow of a carpet stain.

Our minds often wander back to the radiation therapy. Em's blue-dot tattoos are a constant reminder that we might someday revisit that particular agony. No one's ever mentioned when we might think of taking them off, and we've never asked. That'd be like tugging on Superman's cape, or spitting in the wind. You keep your head low in this business. Still, every time I undress Em and see those dots, it sends a chill up my spine. They're like big arrows that say, _Insert Death Here_.

Thanks to Nona Vonne, Emily has – from day one – referred to the tattoos as her "beauty spots."

The radiation sessions are the strongest memories from that dark period of the chemotherapy's rapid-fire induction phase (late July through early December). The routine was all preparation and then – zap! – almost instantaneous application.

After the first, in-hospital session, the outpatient septet went like this: every morning we got up at 6am and gingerly packed Em into the car, the back seat sheathed in heavy plastic. We arrived at Georgetown at about 7:30 and went through the daily rigmarole at same-day surgery check-in. Emily, in great distress throughout, usually pretended to sleep in my arms, often making me carry her around the darkened, empty hallways while I hummed favorite songs. Once admitted, we'd head to nuclear radiation and check in there, where we'd wait for 10-to-15 minutes, and I'd attempt to divert Em's attention by treating her to blistering stroller runs down long corridors. Vonne would often explain the paintings in the waiting area.

The nurse, Joanne Montana, and anesthesiologist, Dr. Richard Hetherington, who processed Em first thing every day, were truly wonderful people, as was the lead nurse in peds recovery, Donna Mistretta. Everyone went out of his or her way to treat us all very warmly. When the time came to carry Em into the cavernous treatment room, all the techs, nurses, and docs would gather around and comfort Em as Hetherington turned out her lights while Vonne and I embraced her tightly and covered her with kisses. When she was completely out, they'd carefully pull off her clothes, lay her ever so gently, and strap her down with a myriad of restraints and tape. It was all done so lovingly and with such sensitive grace that it was an oddly beautiful performance to witness, despite the horror of what came next – or probably, _precisely_ because of what came next. It always plays back in my mind as this dark ballet, right down to the classical music wafting in the background.

At this point, Vonne and I would walk out quickly – not daring to look back – and get some coffee in the lounge. Vonne would spend the next five minutes staring at her hands, me at magazines. Then nurse and drug doc would briskly wheel Em out of the radiation suite across to the CCC building and peds recovery. After all that preparation, the treatment itself consisted of the personnel going to a control booth and pressing a button that started the 60-second, computer-driven delivery. We'd be out of recovery in about 30 minutes and I'd be in my office by ten. Meanwhile, Vonne did the dirty job of driving Miss Emily home in the Honda – before any eruptions.

We did that routine seven times over nine days, following that first session in the hospital. Each time we handed her limp body over to the Georgetown people, we'd fight back the tears and say to each other – as we trudged down the long hallway – that at least we'd soon be one treatment closer to the end. Those were sad and painful days. It's like they happened yesterday – and about a thousand years ago. I'm losing the ability to remember those parts of my life that _aren't_ about Emily's cancer. It's becoming the black hole of my memory: nothing escapes and yet it's so dense that everything else is crowded out by the darkness. It feels like all I know anymore.

Strange, but I always thought I had so many sedations in my life (seven). Emily has already been put down a total of 18 times over the past 8 months: two surgeries; four CAT Scans; 8 radiation sessions, plus the test run; and three other diagnostic procedures (EKG, bone scan, and bone marrow tap). She's come out of each one like a real trooper. Good thing she doesn't know how to swear, though.

People ask, "Is there any more cancer left in Emily? Have the doctors checked everywhere?" We can put it this way: while in the hospital last July, Emily had X-rays over the length and breadth of her body, an ultrasound, two CAT Scans, and a whole-body bone scan. Since then she's had a flat-chest X-ray, two more thoracic/abdominal CAT Scans, and a bone marrow test. So, indeed, she's had the complete battery of tests typically employed to see where this type of cancer has spread. We know from the most recent Scan that _she's free of identifiable cancer sites_ _at this time_. The chemo therefore represents – in length and severity – a relentless series of search-and-destroy missions throughout the body to kill any rogue cancer cells that may be hiding and waiting to re-trigger the tumor-creation process.

So now we're basically into saturation-bombing raids, even though Em appears – by all measures – cancer-free. Why? Because five decades of testing on thousands of little kids tells us _this much and no less_. Believe me, the docs already know the _no-more_ amounts. We just have to trust them on their current, bare-minimum calculations. It's an ongoing experiment, and it always will be.

Back to the real-time narrative: we expect Em's immune system to crash in a couple of days and reach absolute depth over the weekend and early into next week. That was the pattern of the last Adriamycin round and we expect at least as bad this time. Hopefully she'll recover much ground before Vonne goes into labor. We're only about two weeks from the due date, but we're praying for a lucky break here.

Nona Vonne's visit is tremendous. She puts in long hours every day, watching Em and cooking up a storm. Among Nona's many coups are teaching Em to rinse and spit her special mouthwash, and riding her trike. Meanwhile, Dad lives in the basement like some handyman and only comes up for air and food every so often, but at least now we fear not baby – we have _PLAYROOM!_ Mom gets some last minute shopping done and rests as much as possible.

Thursday night Vonne and I see a birthing film with a Bradley class of first timers at the home of the instructor with whom Vonne recently took a refresher course. As we impart our collective wisdom to the novices, we find our words tinged with a deep nostalgia and sadness – remembering what a perfect little baby Emily was. We'd love to be that lucky again, but a certain somberness has attached itself to the process. We now know what a non-guarantee such a nifty debut really is. One expects Phil Donahue to extend his mike to some lady from Piscataway who tells us to _Stop feeling sorry for yourselves and get down on your knees and thank God you can have another baby cause my daughter can't!_ And blah, blah, blah! Perhaps all true on some level and yet the feelings are there, so shut up Piscataway! Watching the birth film leaves us both so emotional from reliving the experience. It's still the most purely positive experience from either of our lives and thus we're deeply excited. And if all that sound like we're being pulled in opposite emotional directions, then . . . I'm getting better at this writing stuff!

After a brief respite last week, Emily is once again secretly ripping off her catheter bandage on a regular basis, usually as she lies in bed at night. She feels bad about it and knows it's wrong, but we're at a loss about what to do after trying all the tricks relayed to us by nurses. There's so much danger involved with infections, but at least we always catch it within an hour or two. We talk to Em about it at great lengths, but try explaining to a three-year-old the risk of dying from just pulling off a Band-Aid! We go to absurd lengths to supervise her, but alas, she does it anyway. We suppose it remains her one clear moment of control in all of this, although it's tempting at times to read a darker interpretation into some of her explanations.

Sometimes I think Em can't take it anymore and wants to sabotage the process – even herself – on some sad, pathetic level. Other times I'm sure. Naturally, this is not the kind of discussion any parent dreams of having with his or her three-year-old, but such is our twisted world right now. Of course, we forgive her anything, and since we just want to keep her alive, we hope someday she forgives us all the screaming, all the threats, and all the times we just plain lose control.

Then again, sometimes a banana is just a banana. Em has always loved taking apart intricate things. So we just jut out our chins and persevere with her often-disheartening-but-usually-just-annoying behavior. Hopefully, nothing will ever come of it other than us using up our bandage supplies faster than anyone on record.

As I finish this update, Emily's entering week 33 of 65, meaning she's just past the halfway point in her chemotherapy. The projected end date remains 27 October – a mere 226 days away. Who'd have thought that a bunch a guys sitting around a table back in 1969 could have predicted what life would be like – day-in and day-out – for all of us 26 years later? But chemo protocols are like that, and we're grateful that hers is carved in methodological stone. No experiments for us – please.

Meanwhile, Em is fading fast and the crabbiness factor is starting to skyrocket. Thank God she's finally connecting with _Mary Poppins._ Now there's a lengthy song list that'll keep her busy for a while. I swear, with her mania for show tunes, someday she'll pen _Wilms' Tumor – The Musical!_

Emily Update #9 (14-20 March 1995)

Let me start this update with an important caveat: I write this thing in bits and pieces over several days, saving the text in one big master file. Different moods on different days create different segments. I don't edit much at all, except to select portions from the master file for quick compilation of each week's update. Not everything makes it into the update the same week it's written, and some things never see the light of day. So if it sounds a bit schizoid here and there, it's because it's so non-linear in both context and execution.

Another program note: when I started this update process, it was my intent that it serve most simply as a _long-distance_ _letter_ to an Emily many years down the road. Rest assured when you – today's real-time eavesdroppers – read these updates that there's no hidden text. Whenever we describe things, people, emotions, or experiences, we're not sending any secret signals to anyone out there. No one should ever be so foolish as to read himself or her into anything. Neither Vonne nor I have any trouble telling anyone that they're doing something we don't like. Moreover, no one should invest any more meaning into what is written here than we do ourselves. We routinely engage in 180-degree turns on decisions, opinions, and rules that only hours before seemed carved in stone. We are indeed struggling with the mental duress of Emily's cancer, but as we note in many places, there are as many updrafts as downdrafts in this storm and, all in all, we're holding up.

If we sound particularly dreamy one minute and very down the next, it's the promise and peril of Emily's fate that makes us so. Save for a few scars and the lost kidney, Em-Cat remains on track for a complete recovery and a normal life – pretty much everything we hoped for in the past. Then again, she very well may die this year. Of course, you could say the same thing about any kid, at any time. The upside is a long and productive life; the downside is a horrible death today. _Go dogs! Go! Now it is time for . . .._ Emily's cancer just brings that abstraction down out of the clouds for us – like holding a beating heart in your hand. This is self-awareness taken to extremes. _Today is the first day of the rest of her death._

So if we scale heights and plummet deep into crevices in these updates, it's because this whole thing still has that all-or-nothing flavor. It's like the dream when you know you've done something horribly wrong, and – realizing it's a dream – you want to wake up and render void this alternative vision of your life. You want that instant feeling of redemption, freedom, or escape. _This is where we are_. And just like those dreams, it all seems to go in slow motion. We slip through days wondering when the bad news will come, knowing that it always comes when we least expect it and usually in the most mundane form – not during the all-exciting CAT Scan but the routine blood draw where that small discrepancy is found. _Nothing really to worry about. We're just going to follow it up and see what we can find_ . . . like Emily's tombstone.

We keep telling ourselves that we wax dramatic whenever we engage in such gloom. We really want to be proven wrong, melodramatic, self-indulgent, and overly concerned. But we already know what that lightning strike feels like. We've already bit into that apple. We've had that one-in-a-million conversation with doctors who – despite best efforts – can't help thinking somewhere in the back of their minds how exciting it is to treat this rare cancer. We've been told over and over again what an unbelievable situation this is by people who see unbelievable situations every day. We've _blah, blah, blah!_

I just wanted to make the original point about people not reading anything into these updates. As you can see, we're far too self-absorbed to take potshots at anyone in particular (just the faceless masses). Then again, selfish times demand selfish people. We're so far down Maslow's hierarchy of needs that we're fortunate to behave in public at all – and Vonne works at the service desk . . . in retail! Talk about your self-control!

The weekend following Nona Vonne's visit sees us all basking in her afterglow. Still, we keep a low profile. Vonne finishes her last three days at the store before starting maternity leave, escaping just before a big sale. We also start practicing our old Bradley Method labor exercises. Meanwhile, I keep working on the basement at night, which brings its own problems. Rosa, our recently insane cat, stages a pee-in protest when her litter box is moved around the basement as I paint. Now there's something that brings you down to earth.

As for Em herself, this week is a bit of a mystery. She's strong and very energetic over the weekend following the round. When we're in Lombardi Monday morning (13 Mar), I mention to Dr. Gootenberg how she glided through the chemo, in contrast to the _Sturm und Drang_ of last round. True to form, he immediately douses any hope that this round might be easier, saying he expects bad stuff in the weeks ahead. So we approach the week with suitable caution.

But nothing happens. Vonne takes Em to a local playground every morning, while Em and I hit the pavement with her trike for the better part of an hour every evening. So far, her stamina and energy level remain a huge and pleasant surprise. Emily even sings and dances her way through the now daily showing of _Mary Poppins._ There are some very long dance numbers in that video, but she does, indeed, _step in time_ throughout. Although her English accent leaves a bit to be desired, it's still fun to hear her sing about her _sister suffragettes!_

One afternoon, I bike Em over to the local recreational center (she rides in an attached seat), where she plays on this modern playground at about 60mph for almost two hours. As the time passes, Em-Cat wears down a series of impromptu playmates. Emily attracts playmates of all ages simply because she laughs, dances, and sings so intensely that kids start playing with her merely to find out why she's having so much fun all by herself. Of course, being three now, Em solemnly leads me over to the benches and tells me to leave her alone while she plays, which means I've already been reduced to daddy chauffeur.

Do we celebrate Em's energy? Sort of, but not really. Warning bells are ringing somewhere. Odd, but it feels better when Emily suffers outwardly from the chemo. When it does, the docs always comfort us with _,_ "This means the medicine is doing exactly what it is supposed to do." So it seems counter-intuitive to celebrate a week like this, as much as we welcome it. Then again, all we need is one scary blood count to set our minds at ease – so to speak. Oddly enough, it's only when the hurting begins that we can feel genuine satisfaction at Em-Cat's smooth processing of this round. We live in a cruel universe.

So far, Emily has navigated all the chemo rounds with aplomb and skill – both of which are noticed and appreciated by the Lombardi staff. Many kids require far more drug interventions to deal with all the side effects. Plenty get counseling as well. Em seems to take all this in stride, including the information we share about her _cancer_ , the inevitability of _feeling bad_ , and the harsh chemo being necessary for her to _feel better_ and _get healthy._ She absorbs all this reality with a great and open courage. Yes, most nights are bad, but that shouldn't count against her record any more than against ours. They only reveal our human-ness under conditions of mental and emotional hardship. As my mother says, "having courage isn't about not being scared." If you don't know the danger, no courage is involved, just ignorance or foolhardiness. Real courage is going ahead with events understanding the dangers you'll face.

How much can a three-year-old understand? More than you might imagine. Emily can tell how people treat her differently now. She realizes she's bald while other kids are not – and she understands why. Em-Cat knows the chemo will land her in a world of hurt every time she receives it; it's not just another tube flushing to her. She knows her chest catheter leaves her quite vulnerable to a host of dangers that other kids never have to think about. She knows it's important to take all her medicines, to lie still during difficult and painful procedures, and to let all those doctors examine her. Em visibly steels herself whenever we enter an unfamiliar waiting room, knowing new challenges are only minutes away. Most of all, Emily understands that all of this activity, concern, and love is focused on keeping her alive. We can tell that she values it all, precisely because she relies on it so intensely to get her through each day.

And yes, Emily knows far too much about the concept of dying. While she doesn't care to tackle the subject of her own possible demise head-on (and we certainly don't push it), she naturally gravitates toward it in her play and videos. In short, Em identifies very strongly with characters that endure great suffering and then die. It is beyond a morbid fascination. We spend a lot of time talking with her about them, because she often asks, "What if I was like them and was going to die?"

While navigating through her cancer treatments, Emily often quickly lapses into the persona of a frightened child, absorbing our hugs and whispered warm words, only then to recover and cope with those situations just as quickly as she had collapsed in fear from them. In these 360-degree emotional spins, Em draws great inner strength from courageous acts depicted in her books and videos. Her references to these fictional characters are both appropriate and subtle – e.g., recalling a character stuck in a well when she's strapped down deep inside some medical contraption. These self-identifications go right to the heart of whatever fears she is then experiencing, and always strike me as an impressive display of her capacity for self-awareness. In short, they make me proud. But I also feel sad that she's had to make these connections at such a young age. There's not much silliness in her life, and there should be.

If you think you guys – Emily's family and friends – feel a strong compulsion to do nice things for her, imagine what it's like to see her courage day-in and day-out. We want to do _everything_ for her and yet, we know in the back of our heads that we must resist that feeling so as not to hamstring her assertiveness and self-confidence for that normal life that may still lie ahead.

Details: Em now starts week 34 of 65, with 221 days and five chemo rounds to go. She's stayed out of the hospital since her two weeks last July (her legend grows) and has required only three transfusions to date. At last check, she's four pounds heavier than her post-op weight, and about three inches taller.

We've heard back from several people about these updates, and generally speaking, people now _get_ this whole pediatric cancer thing better. That's great to hear. The isolation a family feels in this situation isn't really imposed by anyone. Sure, we need to keep Em lonesome for stretches due to immune system crashes, but the real isolation comes in the lack of comprehension – the _I-just-can't-imagine-what-you're-going-through_ (IJCIWYGT). Being on the receiving end of that statement is intimidating, since you can barely imagine it yourself, even as it slaps you in the face every morning.

It some ways, the IJCIWYGT effect (I've been inside the Beltway far too long . . . anyway, it's pronounced _edgy-white_ ) is most gratifying at first. It's certainly the best thing to say upon hearing such news – something we'll never forget in the future. In comparison, the ultimate loser comment is _I-know-exactly-what-you're-going-through_ (IKEWYGT, or _icky-white_ ).

I know what you're thinking, but seriously, there's a book on all this stuff.

The IKEWTGTs always tell you that they've _been there, done that_. In effect, they're saying, "Please, you'll have to do better than that!" Inevitably, the IKEWTGTs follow up with an endless list of nearly every _icky_ (see how this all fits together) cancer story they've ever heard ("Oh! She lost only a kidney? Well Uncle Joe lost his entire . . .!"). In comparison, the IJCIWYGTs always want to hear your story since – as they admit – they just can't imagine. Even if other Wilms' Tumor parents approached Vonne and me, we'd probably say, "We just can't imagine." Such horrific experiences in life are simply to be lived in real time, and – at best – clumsily deconstructed later (like here). There's no wisdom imparted, just the scars of memory you can rub when you're depressed.

[Studio audience cue – _Awwwwwwwww!_ ]

Indeed, such life events should be approached with a certain amount of awe.

Geez, I've forgotten the point of that last paragraph. For a minute, I thought I was writing the cover piece for _Touchy-Feely Today!_

Stop that! Stop suppressing those emotions!

Ah yes, now I remember, my point is that the IJCIWYGT sentiment gets isolating with time, no matter how correct the approach and how sincere the effort to understand – unless the people involved disseminate the experience to allow outsiders some access to the process. I think the updates have done that to an extent, according to what we've heard, and feeling less isolated in that way means a lot to us.

Are we worried about handling a new baby amidst all this hullabaloo? Yes, definitely. Taking care of Emily with all her downtimes, plus all those appointments and home medical procedures, riding herd on the insurance, keeping one's own spirits up and tending to regular family tasks and WOW! This mommy-and-daddy stuff feels like a full time job, with work and personal pursuits as afterthoughts. Still, another child will put the whole cancer thing into a more reasonable perspective – assuming all remains well with Em-Cat. We started this year facing two huge tasks: bringing one kid into the world and keeping the other from leaving it. Getting the first job out of the way will be a relief – whatever the ensuing load.

And then there's the joy of a new baby, and we think it'll be a lot of fun for Emily as well. She is usually so conscientious about other people's feelings. For example, she'll often hug and console us when she senses we're down, telling us not to feel bad or that she loves us, and she does this even when in a bad way herself. In that way, Emily's personality and strength keep this cancer-fight from becoming an ultimately consumptive process – eating up our emotional reserves. She pretty much replenishes in you what circumstances have forced from you. Em-Cat has matured most remarkably in that way. Sometime years from now, maybe on a long drive somewhere, we'll reminisce with our eldest child about the tremendous courage she displayed as a three-year-old, how proud we were to know her back then, how incredible was her victory over this dreaded disease, and how much we feel in her debt for – in many ways – taking us along for the ride and revealing something very impressive about that first best product of our lives together. As sad and depressing as this whole fight is at many junctures, Vonne and I wouldn't miss it for the world.

In that sense, Emily's message to me in particular came at a crucial point early in my career. Washington is a workaholic town where everyone feels the pressure of advancement, the big job, the big career – the big _everything_. This area is unbelievably competitive on almost every level imaginable (a quick drive on the beltway will convince you). It's an easy place to lose sight of your family and that ability to ask yourself the think-ahead questions that keep you safe – such as, _What'll matter more to me in twenty years, that I earned that extra bit of money? Played that ego game? Or that I was really there for my child or spouse?_ Of course, it's an easy finger-pointing exercise that can be self-defeating from the start, since all life is about balancing such demands.

My point is this: I got slapped hard at an early, formative point in my career and I think it's doing me some good that'll continue over the rest of my life. My career needs will always be transitory and ephemeral when put up against those of Vonne, Emily and other children. That's what dads really provide: making sure loved ones get everything out of life they want. Any guy who treats his career with greater respect than his wife and kids usually gets what he deserves, the worst case being the fellow who thinks the money or acclaim somehow makes up for all his non-involvement in their lives.

I get paid to do strategic planning – thinking about the future. Emily's cancer has shown me how important it is to use those skills in my own life.

[Cue violins.]

It's a cruel lesson witnessed almost every day in this town: you lose the job and everything that goes with it. People forget you in a heartbeat. The traffic of life moves past the wet spot on the pavement, the flow snaking-up a bit from the craned-neck factor. Who comes by to pick you up? Anybody left from the family you ignored? Then there's that crushed, dazed look on your face and the plaintive, _"_ If I only had spent more time . . _.._ " I know plenty of middle-aged guys with a red Miata who see their kids every other weekend. I don't plan on being one of them.

I think about these images a lot as we move through this experience. Or perhaps I've watched _Mary Poppins_ too much recently and I see myself in the father character of "George Banks."

It's that Nona Poppins woman, with all her talk of turning bread and water into mashed potatoes and chocolate sauce! Really! It's quite absurd.

[Cue music.]

A British household . . ..

[Nah nah nah naaw . . ..]

Everybody now! Hum if you must!

Point being, I don't want this to be an exceptional period in my fatherhood. I want the care, time, and focus that I'm now bringing to this parenting thing to be the norm. Not that I'm doing that spectacularly (if at all), it's just that at least I'm more self-aware – and that helps. Of course, I'm the last person to judge my performance on this score, but I am the one in the family with e-mail, so mine if the first draft of this _herstory_.

Vonne sees her OB on Thursday and everything remains as before. She is primed and ready at 1-centimeter dilated, with the baby dropped but not yet effaced. Best news is that the doctor signed our ten-point Bradley birth plan, my favorite item being, _Cut up my lifelong sexual partner's private parts and I will hunt you down and get you where you live!_ Okay, I overstate a wee bit; it's actually worded in a very touchy-feely way. Vonne's quite relieved that he initialed it without protest. Perhaps this guy remembers us from last time, for he attended Em's birth. I distinctly remember shaking his hand when we arrived for delivery and hearing his frustration that our plan wouldn't allow him to poke around as much as he usually does. Vonne offered to buy him the Bradley book. The OB retorted that he was trained in New York and that wasn't the way they do things up there. I said we'd be sure to call him if our midwife decided we needed him. Yes sir, I do remember shaking that man's hand.

Here's an example of our subconscious faith in Emily's eventual recovery. Our collection of _Star Trek_ action figures now stands at 62. I know. I count them every night after playing with them. We've also bought every play set imaginable. Now, everyone knows that Vonne and I are huge fans of the shows, but we've always made fun of people who collected stuff. So why this bizarre expenditure, something like $75,000 at last check . . . er . . . charge?

I really couldn't have guessed at the answer until last week, when I caught myself down in the Potomac Mills mall buying the engineering-room play set on a day when – frankly – medical bills were piling up like crazy.

Anyway, I end up calling Vonne and sort of get her permission. These phone conversations when one of us asks for permission to buy Emily something truly goofy remind me of the weird ways Post reporters Woodward and Bernstein would get informants to confirm information during their Watergate investigation: _If you don't feel this purchase is obscenely stupid, just clear your throat and hang up and I'll take that as a definite approval!_ But even after I get Vonne's okay, I'm still standing there wondering about the impulsiveness – even compulsiveness – of this purchase. And as I'm frozen there in the toy store aisle, staring at the box in my hands, the revelation finally dawns when my eyes come across the warning.

_Ages 4 and up_.

Then I know why we buy toys Em won't play with them for years. These purchases – useless in the here and now – are statements of faith.

Our child is only two-and-a-half when she's diagnosed with a rare but aggressive cancer that's certain to kill her within weeks, unless . . . surgery, radiation, and chemo. At that shocking moment of discovery, we're standing at the starting line of a long and arduous journey almost too painful to contemplate. A year and a half of chemotherapy! The thought made me tremble inside like the first 100 yards of a marathon – would our family still be together at the finish line? For Vonne, this harsh vision piggybacked on the stunning realization that she was facing nine months of pregnancy and then an infant to care for.

In short, those eighteen months were simply an inconceivable distance, given the exhaustion we already felt inside after the hospitalization and radiation treatments. And yet, months do pass and here I am, standing at this Toys R' Us, staring at that box. Snapping back to reality, I suddenly realize I have to buy this toy. Someday this mad dash will end. Someday my kid will be _4 and up._ It's a very good feeling – making that purchase. Vonne understands immediately when I show her the box later that evening. She asks, "Do you think we're crazy buying this stuff for Emily when we don't know if she even be alive to play with it?" Then she answers herself.

"I just know that if it makes us feel good to get it now, we should."

I couldn't agree more.

See how deep Star Trek really is?

We finally blow off our OPUS volunteer this week. I can't remember what the acronym stands for, but the program pairs Georgetown undergrads with pediatric cancer patients. We got to know one such volunteer during our hospital stay last July, a young lady who supervised the toy room just off intensive care. A pre-nursing undergrad, she was wonderful with Emily. We still have the hat she helped Em to paint one slow afternoon.

Well anyway, last fall we're assigned another young woman for our visits to the clinic. She's supposed to help keep Em busy, as well as establish some sort of supportive rapport. Alas, this student starts missing us after making the first couple of times, and then she stops bothering altogether. In a way, Em's good handling of the chemo makes it harder for her to track our infrequent trips to Lombardi. Apparently, this volunteer is doing better with another kid who gets hospitalized a lot. Still, this young lady pisses us off quite a bit.

We're always profoundly grateful for any little effort on Em's behalf. But the people who anger us the most are the ones who, upon hearing the news, make a dramatic show about all the things they're definitely going to do for us and then disappear – never to be heard from again. We actually prefer the people who shun us from the start to these extravagant promisers who don't follow through. That's because once it's apparent that it's all show and no action, we feel used, like it's simply something the _y_ need to get off their chests to make themselves feel good. Being ignored is preferable for its honesty alone.

In some ways, it's really a hassle to be the cancer parent, because now a lot of people who wouldn't otherwise talk to you have the ready question to fill in any awkward moment in elevators, casual meetings, etc. You can tell when their interest is genuine, but too many ask about Em and then cringe in fear that I might offer more than a polite non-answer – when that is all they want. We're not being harsh here. We can tell who's willing to listen from someone just performing a duty. It's that unmistakable look of relief on the latter's face when you put on your mask and reply, "Fine – just fine." They don't really want in. They just want to do the right thing, feel good about doing it, and then move along. You want them to move along as well, since you're not a person to them – just an obligation. It's a feeling worth remembering.

Emily Update #10 (20-27 March 1995)

Already I regret all the Rosa bashing of last week. After further research (the glories of sniffing basement carpet), I conclude that maybe we're looking at some sort of urinary tract ailment. "Now I got three women under medical care!" I say to myself. I take Rosa to the vet on Monday night and guess what? She doesn't like to pee for doctors any more than Em does! So Rosa gets a whole day at the vet's on Tuesday, with IV and all. Honestly, I can almost hear Jerry Springer ringing my phone: females who won't pee on demand and the men who love them. Anyway, the test results were . . . NEGATIVE! Seems that with Emily battling cancer, Mom nearing labor, and Dad working the biggest challenge of his career to date, it's actually Rosa who's having a nervous breakdown! All nine pounds of her quivering body! The doctor thinks it was most likely due to the discombobulation caused by redecorating the basement. And of course, once Rosa pees a couple of times on the carpet, she gets a taste for it – like some serial stainer of carpets. Feels kinda funky and fun. Well, massive cleaning efforts have been made and the litter box is now back in the bathroom. And we thought Emily's stubborn about changing her potty habits!

More generally I apologize to Rosa since she really has been – for close to a decade – the world's best cat. She never misbehaves in any manner, is very loving, and suitably deferential to any kid. She also catches any basement bugs and eats them, and she's nailed a mouse or two in her time. All in all, she's the best cat we've ever owned, and I regret every bad thing that I've written about her. I know both our families are full of cat-hating dog lovers who look for any opportunity to malign poor Rosa, but fear not my feline friend, I will betray you no more! Suffice it say, I will lovingly maintain her litter box until I die.

Other than that minor psychodrama (the screaming, the tears, the dark stains on the carpet), we still have that baby thing looming, and then there's Em bottoming out from the Adriamycin round. As expected, her blood numbers are low on Monday. Her platelets (227K) and hemoglobin (8.5) are both significantly above transfusion level, so we aren't under that particular gun. But her white blood count is a meager 1.2K (way below normal) and her absolute neutrophil count is only 156 – way below the threshold for neutropenia. Emily is in great danger of contracting a serious infection that could kill her.

What we don't know on Monday is whether Emily's bottomed out or not. Her energy level seems strong (good hemoglobin number) and her complexion is pink (good platelets). So this Adriamycin round is like the last – pretty much limited to a white count depression. This makes us feel fairly good because Adriamycin engenders enough fear concerning her heart. Seeing Em muscle her way through the round is a great relief. Any serious backlash during the round itself would be so scary, suggesting immediate damage to her heart, and from there it's just a skip and a jump to appearing on local TV and begging for a donated organ. The docs say that's highly improbable, and yet you see the relief on their faces when they hear the dose goes well. We are playing with "cardiotoxic" fire, and we're injecting it right into her heart. How messed up is that?

Emily has kept her hair this round – much to our amazement. The old pattern was that she grew a fuzzy cap of hair through the Actinomycin-Vincristine rounds, only to lose it again following the Adriamycin. Now the exact reverse is occurring, in line with Vonne's opinion that it's been the Vincristine all along. This is another example of how the past is such an accurate guide for the future.

Speaking to my brother Ted on the phone brings some thoughts to mind: We are a lot calmer now that we've worked our way through the radiation and the initial 13-week chemo induction phase. That whole scene last year had a Bataan Death March quality to it: Em getting weaker and weaker, doses coming faster and faster, and every Lombardi trip a nail-biter concerning possible transfusions. Everything is up in the air every time we go in to the clinic, and Vonne has to take Emily in three times a week. New fears seem to come out of nowhere. Every bit of information feels like a blindsiding.

For example, in November when Em's blood numbers are super-depressed week after week, the docs decide on a bone marrow tap. It's a very unpleasant experience I once endured as an adolescent – the very thought still makes me wince. Now, my first response when I hear the news is, "Didn't we do a bone scan last July to make sure the Wilms' hadn't spread into her skeleton?" Well, turns out the bone scan is only for the bone and not the marrow, which is sort of like being told after the tornado destroys your house, that your insurance only kicks in if your house is actually picked up and dumped into an alternative fantasy world populated by small, pituitary-challenged people with squeaky voices. Better yet, it reminds me of Billy Crystal's "Miracle Max" character in _The Princess Bride_ :

_Aha_ _, so you're an expert now? Well, it just so happens that your daughter was only soooort of tested for cancer in her bones!_

So boom! My Monday morning is no longer just a quick blood draw and then off to work. Lucky me! Today turns out to include a surprise brush with the Grim Reaper. Turns out they get to dope her up again. Turns out I get to hold her down again when – regardless of medication – she feels that large-bore needle going into her bone. But then again, it turns out Nurse Mary Alice gets the marrow on the first try, which is not easy.

Em sleeps on the way home. I sit alone in my office in the dark waiting for the phone call. Vonne spends the afternoon holding Em in her arms, wondering if this time the bullet is actually in the firing chamber: _We're terribly sorry, Mrs. Barnett, but remember that we said there were no guarantees in any of this._ And then the phone rings and it's okay, not only is there no cancer evident in the marrow, but it's full of signs of immune system recovery. The radiation's long shadow is dissipating. We live to fight another week . . . when they just so happen to find evidence of trauma in her lungs, suggesting the onset of long-term structural damage from the radiation therapy.

Well! It just so happens that she'll only soooort of breathe in the future!

Expected? Yes. Bad sign? Maybe _._

The usual handholding: "But don't worry; the CAT Scan next week will clear this up – some."

Unless they find something other new thing to worry about, which they always do, which then sort of gets solved the following week, and so on and so on. Meanwhile, I'm talking with the doctor in the clinic when Em collapses to the floor, begging simultaneously to be left alone and taken home: "Go away Daddy! Go away! Dada! Pick me up! Take me to the car!" I feel like screaming when a nurse grabs my arm, says something nice, and the impulse passes. After all, we're in public, surrounded by people living with and dying from cancer. What makes our case so special? So I collect my dignity and my daughter, and we leave quietly.

Yes, those thirteen weeks were like a fog – one long series of great unknowns and shock traumas. You keep getting the feeling that you aren't taking in the information fast enough:

**Me:** Did I miss something or didn't we perform a test like that in the hospital?

**Them:** No, you're correct Mr. Barnett, _but it just so happens that we only soooort of performed a test like that!_

It's like that nightmare where you're trying to exit the long tunnel and all sorts of monsters keep springing out at you from the darkness as you move along – the tunnel is reverse-zooming to an ever-increasing distance.

Now, of course, everything is different. We have some perspective. We have the rhythm of the rounds, around which all of life is measured and arranged. We handle far more complexity in our daily lives than we ever thought possible. We're more adept at staying on top of the data, the issues – the next roadblock. We negotiate everything possible with the nurses who really run Emily's chemo (you merely glad-hand and chat up the doctors so long as things move along). We think more like informed customers as opposed to basket-case beneficiaries. We're far more in control now – as hopelessly brave and stupid as that statement sounds.

We did indeed put a lot of faith in the doctors during those first few days and months. Vonne and I remain eternally grateful that we linked up with Dr. Javedan for the very first time last July. His many years of practice translated into connections galore, meaning we got the best care possible – as fast as possible. We've got doctors whose grad students describe them in almost mystical terms as people of tremendous caring, great insight, and immense devotion to their craft. The Lombardi nurses are equally impressive. All go out of their way to do whatever they can to make this easier for Em, our family, and anyone else who comes into our orbit. No detail is too small for them – no fear too trivial. Nothing seems more precious than our child. They are all very good people. Both doctors and nurses – with a few stunning exceptions – treat us with great respect and care throughout this experience, right down to providing Emily's birthday cake at a clinic visit last December.

This new perspective on the chemo round is life changing, but the round is the indivisible unit by which all time and activity are measured. Last week I'm speaking with one of our priests at St. Andrew's, and I'm shocked to realize I'm describing events from January as though they happened yesterday. Yet it seems like only yesterday – or a thousand yesterdays. I mean, the January round is really the February nightmares, which then become the Nona Vonne visit and segue right into the March round, which, of course, segues right into the baby's birth, the April round, the baptism, the June round, and so on. Life is one never-ending montage, and we desperately need a commercial break.

This year-and-a-half chemo protocol is such a strange movement of time – this bubble of experience which moves along at an excruciatingly slow pace across some cosmic timeline, but within which you race about till you drop. It reminds me of the _Star Trek – Deep Space Nine_ premier when the crew encounter this race of people who exist in another space dimension where time has no linear meaning – no past and no future, only a _now_ that encompasses all. You have that feeling of existing simultaneously across a mosaic of _pastpresentfuture_ : the seconds clicking on the clock as you await that day's diagnostic verdict; the blurring rush of lights as you speed along through the night toward the emergency platelets transfusion; the enveloping euphoria of the fabled cure date; that still fresh conversation when the surgeon says the kidney must come out; the brutalizing totality of 65 weeks of systematically poisoning your own child; the queer starkness of her bald head against a silk pillow case on Christmas Eve; your wife crying softly in bed; you pacing in a darkened living room explaining it all to no one in particular at 3am.

There is real beauty in all this pathos.

They all exist together in your mind – day-in and night-out. In some ways it feels like an alternative reality: think of the character "Lazarus" in the classic _Star Trek_ episode, "The Alternative Factor." Like Lazarus, this poor space traveler who accidentally stumbles upon the gateway to a polar-opposite universe, and who – once exposed to that alternative reality – is forever being yanked between them with no rhyme or reason, you go through your day with this vague fear that at any second you'll be drawn involuntarily into this murky world of fear, this alternative time in which you constantly relive or prelive the totality of the cancer experience. And it all seems so real, from top to bottom, across all 360 degrees – and surprisingly tactile in sensation (especially the smells).

In some ways it feels like a form of madness. You wink out, travel to that place, and then return – in the blink of an eye (another classic _Trek_ episode). Someone in the room notices the blank look on your face ("What's wrong?"), and you, having no real choice in the matter, simple proceed along whatever timeline seems most real for the moment. You finish your sentence, or pull the muffins out of the oven, or deal with that rude customer, or resume sanding the mantelpiece, or feed the cat. Then _flash!_ You lapse back into this other world – this ball of non-time – and you duke it out for a bit with your fears until your brain locks up, you realize you've been holding your breath, or the stoplight turns green, and then – once again – you move forward wondering, _Is it really the end of the month already?_

Of course, if you're Vonne, the whole process gets catapulted out of orbit because – above and beyond all that – you're pregnant. Inside you there's a very real alternative reality, one that has its own ways of distorting your perceptions of daily life by flooding you with hormones, depriving you of sleep (best form of torture known to man), and subjecting you to a host of painful annoyances.

That all probably sounds scarier than it really is. Vonne and I like to talk about such things to get them into the open, making sure both of us are feeling the same things, using the same coping mechanisms, connecting with the same symbols of normality as we're flooded with abnormal thoughts (odd fears, intense anxieties, negative opinions, very black humor, and, sometimes, uncontrollable anger – not that I truly intended to kill Rosa that night). There is that instinct to hide from others, sensing your bizarreness. But so long as you get it out quickly – almost _getting out of its way_ quickly – it feels more normal than you'd think. No past experience provides guidance, since these things only make sense in the here and now. It's like the way lightning consumes your senses entirely and then instantly disappears – leaving behind the psychic boom.

Of course, there's always the fear of being honest with people about such things – even here. Family's first suggestion is always counseling. Counselor's first suggestion is family – as in _,_ "Have you shared these thoughts with family members?" Well, your family is certainly cheaper than a counselor. Better than that, tell your counselor all your problems and you get a bill. E-mail your family and maybe you get a night out on the town courtesy of Grandma! Dad learns fast the benefits of new technologies! Have we told anyone how depressed we are about our crappy old car? I mean, cry-in-our-beer, banging-on-the-table, _will-no-one-rid-me-of-this-Honda_ depressed? Or perhaps I overplay my hand.

Then again, it probably gets dull listening to this stuff week after week. It gets dull for us too, like the soap opera that's gone to the well too many times on amnesia.

Will Emily Kane live? Will Vonne's baby be okay? Will Tom kill Rosa?

Sometimes we think what a quiet year this should have been. This all seems excessively melodramatic much of the time, until you have one of those chilling discussions with the oncologists and you go from worrying about Emily going to somebody's birthday party to Emily going away for good – just like that. It's like the torturer who lulls you with random acts of kindness and then slaps you hard right out of the blue – that instantly sobering blow. Vonne and I are getting good at recognizing that post-slap look in each other's face.

What really works through all this is keeping your eyes on the prize. Like the spinning ballerina whose head doesn't simply twirl but whip-snaps to attention through each rotation as she instantaneously re-focuses her gaze on some distant point in the theater to keep her balance amidst all the motion, we too constantly refocus on the key points of keeping Emily alive, staying together as a family, and steeling our nerves for the next crisis. That's not to say that we don't struggle, or that we don't fail a thousand times each day. But all in all, we think we've done quite well. We feel strong despite our great vulnerability. We're not going anywhere. I f they want to come and get us, they'll have to break down the front door and take some losses before we'll never surrender.

Flash!

Then again, maybe tonight we'll just watch a video and eat a frozen Tombstone pizza.

**Executioner:** Rosa, now that you've been caught peeing on the carpet again, what would you like on your tombstone?

**Rosa:** A mouse and some mozzarella would be nice.

Actually, Rosa has gone the "square and boxy" (indoor-cat version of the "straight and narrow") ever since I returned her litter box to the basement bathroom. I even built a wooden screen for more privacy. Nothing's too good for that darn cat!

Em's progress on taking showers is really great. She used to be so scared in the beginning, something I know well as I was afraid of showers until I was 25 or so (the close quarters, the isolation, Anthony Perkins in drag perched on the toilet seat). Now Em stands so brave and tall and insists on doing most, if not all, of the washing herself. She carefully cleans around her catheter site with the special soap, obviating much of the uncomfortable scrubbing with alcohol preps later on – smart kid, she.

All sorts of last minute jitters as the baby date nears: the little one's arrival crams extra fears into a head already stuffed with so many bad ones recently confirmed, and yet, there's so much promise too – not that we'd trade Em-Cat for anything. Knowing everything in advance on her wouldn't change a thing in our minds – much less our hearts. She's always represented to both Vonne and I the most amazing union of our separate personalities, not to mention our physical features to a wonderfully spooky degree. Emily remains a far better expression of our love than either of us could have ever hoped for. She makes us believe in a lot of things.

Speaking of believing in a lot of things: church has been a real godsend for us. No really! While often a teary and draining experience (we've gone separately so someone is always home with Em), we always feel rejuvenated. That sense of calm and directed contemplation in the presence of God gives one the feeling of more control. For example, it gives you the confidence to – _flash!_ – go over to that alternative reality and experience some of those scary notions on a more even footing – your teddy bear of religious beliefs firmly gripped. It also feels good to hear Emily's name offered up by the reader as deserving of special prayers, in effect validating your own personal request for God's help. In all, it's a very centering experience. Wrapped up in your own spiritualism, you stand far from the maddening crowd and yet feel its supportive strength. You are unalone.

Such efforts are constantly necessary. You're constantly bombarded by these strange thoughts and either you deal with them directly or the day is shot. If you're Vonne, you call your husband or your mom, or you confide in your homecare nurse, or your cat (Rosa, the sphinx of counselors). If you're me, you call you wife more times a day than you care to remember, or you write these thoughts down as soon as they assault you. Get them out – immediately. Better yet, give them to your friends and family and let them stay up at night thinking about them. Yea! Then you go happily on your way: winning new clients, saving the world's rain forests, training for the New York City marathon (only 1,286 miles to go!). God it can all feel so good sometimes! Enjoy!

Cataloguing some recent photos this morning, I accidentally flip back in time and come across photos of Em just before the diagnosis. It's a real shock: the thin, golden-skinned tyke is shorts and a tank top, with her shoulder-length, corn-silk yellow hair. I feel I'm looking at a dead person. The breath goes right out of me the same way the tears rush to Vonne's eyes when she remembers Emily's birth. In some ways, it feels like that golden period was all a cruel hoax. That Emily is long gone – never to return. The new Emily is such a different creature – if hauntingly familiar. The sense of disconnect is unreal, being as much about us as her.

We know that all parents look back at past points in their children's lives and wonder, "Were they ever that small? That young? That innocent?" _Yes, she was. But that was the old Emily: the pre-bulge-in-the-stomach Emily, the pre-diagnosis Emily, the pre-cancer Emily, the pre-surgeries Emily, the pre-nephroblastomatosis Emily, the pre-chest-catheter Emily, the pre-radiation Emily, the pre-chemotherapy Emily, the pre-side-effects Emily, the pre-long-term-effects Emily, the pre-genetic-case-study Emily, the pre-multiple-transfusions Emily, the pre-long-term-survivor Emily._ _You know, she's the one with the golden hair and two kidneys, the one who sleeps through the night, the one who's almost potty trained, the one who's like everybody else's kid, the one for whom everything seems possible . . . that Emily . . . that Scooby Cat . . . that Em-Cat . . . that Hon' Cat._

Captured right there in living color, she's a ghost from our very own past. There she is! That bald kid sitting over there . . . that determined girl pulling away from the pack at the two-and-a-half mile mark in the race . . . that intelligent woman whose articulate response stuns everyone at the meeting . . . that mother of our grandchildren – all thirty-two pounds of her.

She looked good. I hope she can come visit sometime.

You know, the last time I saw that girl was last summer in Chicago's O'Hare Airport, the day after I'd discovered the lump. We're stuck there, in this backwater waiting area. Since the area's closed off and I can keep my eyes on her, I let Em run around. Everyone's stuck there like us, bored to tears, waiting for the plane. So Em starts making the rounds in this cute blue-jean dress – dancing, singing, and laughing. She's stopping in front of people and performing especially for them, asking and answering questions, jumping on and off the benches. She's the center of attention and she knows it, milking it for all it's worth.

Remembering her back then is like staring into one of those pristine black-and-white photos they show in documentaries: the famous person as a child, or on her wedding day, or just before the big event. These subjects always look so pure when viewed backward through time, before whatever subsequent transformation made them notable. You feel yourself wondering what they were really like. You want to go back into the picture and meet them _then_. And indeed, we'd love to go back and introduce ourselves to that golden girl. In fact, I'd settle for coming out of the shower and discovering that last season's episodes were merely a dream. I wouldn't care how many viewers we lost.

Vonne sees the OB again today (23 Mar). Nothing significant to report. They make her take a non-stress test – another stupid diagnostic in search of a function. Their diagnosis _?_ "The baby seems kind of quiet this morning." Vonne thanks them profusely for this out-of-the-blue information and the opportunity to stare at the ceiling for half an hour. Anyway, I feel it'll happen this weekend.

Later that day we learn from Em's blood draw that she's on the rebound. Everything is up: 9.0 hemoglobin, 400K platelets, 1.8 white count, and 396 absolute neutrophil count – the last one rising as a percentage of the white count (which means her immune system is reconstituting itself).

Emily Update #11 (27 March-3 April 1995)

Em enters week 36 with 29 to go. The next round is in late April and we expect a very bad time of it. We may well suffer our first hospitalization. We hope to have baby well in hand by then, but if need be I'll go in with Em because Vonne will be nursing. We'll just make it work – one way or another.

Em herself is just fine as the week progresses. On Wednesday, our homecare nurse Kathie Clemens performs a blood draw. The key number is her 1,075 neutrophil count, as anything over 1K means her immune system's basically on-line. These numbers officially end the last round, creating our biggest breathing space so far – two whole carefree weeks before we need worry about keeping Emily healthy enough to begin the next round. Hmmm. Let's have a baby!

Like anybody else, Vonne gets a bit nervy as the due date looms. But this time there's the added pressure to pull this off without a hitch, as we can ill-afford any extra medical crises or even setbacks right now. To put it plainly, down time is not much of an option for us, for the other show has to go on – no matter what. So we try to play it cool and think ahead as much as possible. For example, we're trying to stay well rested, plus we're showering Em every night to give us the greatest possible leeway regarding her dressing changes.

This week both Vonne and I enjoy lengthy phone conversations with our social worker Yvonne Bush, who wants to hear how things are going with the pregnancy. During my talk with her, I describe the updates and offer to put her on the list. Naturally, it's an interesting perspective for someone who works with families on a professional level. The quid pro quo is that Yvonne will alert us to issues we may want to cover, focusing on the best output for Emily years down the road. As I wrote earlier, we consider the updates a long-distance letter to an adult Emily trying to make sense of a bizarre experience she can only faintly remember.

As I inform Yvonne, I tried to write a history of the whole July hospital experience last September, but trashed it after penning 20 pages. Why? It was still too fresh and painful. The desire to block out the memory remained profound. It reminded me of the blackout I felt after finishing the Marine Corps marathon, when for about 2-to-3 hours following the race I was simply too mentally depleted to think back to any part of the run. Like then, I simply had this huge blank spot in my brain about Emily's cancer. I could only deal with it for a few hours each day. The rest was either la-la land, or alcohol, or both. It really wasn't until January and the breaks between rounds that I found the energy or enthusiasm to write anything. Time had finally shifted far enough to dull some of the psychic pain. Still, I've actually caught myself unconsciously wincing when I encounter references to the 4th of July. Is that holiday going to be ruined for me forever?

Of course, the special event we're about to celebrate also traces its roots back to that week in July. If that nifty twist of fate hadn't occurred, neither Vonne nor I can say whether we'd have tried again to conceive. I don't have the foggiest idea, and wouldn't even know where to start the search on that one.

Strange to admit, but once Em was diagnosed, I started feeling sure Vonne was pregnant. It's like this movie where the foreshadowing is so obvious: Vonne instinctively stays away from X-ray situations, while I instinctively volunteer to go in with Em. Thing is, we never speak a word about it during those two weeks in the hospital, until the last day when we meet with the geneticists. Then and only then do we openly acknowledge the possibility to one another. A few hours later our suspicions are confirmed – the day our world stood still.

It was like we entered a very strange world where everything is at once possible and impossible. _Of course Vonne's pregnant!_ Emily is staring down death every other day. What else could have happened? But this small, happy thought has buoyed us both since. It's this little island to which we retreat, sometimes in search of pure joy and sometimes to engage in our darkest nightmares. But in a world with lots beyond our control, this little island feels very much our own.

Sad to say, but the island metaphor is more apt than it should be. Vonne is and has been very alone in this pregnancy. I feel very bad about that and always will. Yet her efforts to carry on despite all light being sucked into the black hole of Emily's cancer have been nothing short of magnificent.

I think back to a particular scene at Paisan's, the Italian restaurant where we both worked and first met as college students in Madison, Wisconsin: it's a Saturday night and Vonne's waiting on one of the two big tables in the back, near the kitchen where I work. She's handling this large crowd of rowdy post-game Badger fans. It's one of those dreamy movie shots: camera zooms up on this beautiful profile. You see her lips move and she laughs, but there's no sound save the musical score. All I can think is, _God, I could really see spending the rest of my life with a woman like that._ Nothing crass. Just a simple and good feeling. A sense that she would be someone to admire over the course of a lifetime. Someone to grow old with. Someone to trust across 360 degrees. It's a moment of clarity I've never forgotten, one I've thought about a lot over the past months as Vonne's courage and strength have confirmed every bit of faith I've ever placed in our relationship. She remains both a great unknown and the closest friend I've ever had. I don't imagine I'll ever figure her out completely, but much ground has been covered in recent months.

Actually, speaking of lust reminds me of one of my favorite Russian short stories. It's about a guy who falls in love for the first time with a fascinating woman and wakes up the morning after . . .. He rises out of bed and, looking out the window, is shocked to see a tiger come crashing through the glass. After that bit of excitement, he discovers he can fly and . . . well, you get the picture. All sorts of fantastic things start happening to him after that magical night. After this moment of discovery, everything is possible and nothing impossible.

I first read the story about the time that I fell in love with Vonne – if you know what I mean. It captured exactly how I felt at the time – life was full of magic. It was like I had passed over a threshold into some new and mystical world.

July 8, 1994 gives off a similar feel – just the flip side. In a way, it was pleasantly centering in all its evil. Vonne has often described the cold comfort derived from knowing fully the worst things possible. I compare it to discovering something bad about the house and feeling better once the extent of needed repairs are known – no matter the cost. There is that feeling that the fickle finger of fate must eventually point at your child at some point in life. The devil will come in some form. That you can predict. Strange, but in a Nietzschean way, this whole process has strengthened more than it has damaged. It's just many years of parenting wisdom being force-fed in a matter of minutes.

Don't get us wrong. We know it could have been much worse. We didn't have to dive over that particular cliff, but we've dangled over it for quite a while and had time to focus our sights on what lies below. Like the rock climber who's fallen a long way only to have his ropes hold fast, we're acquainted with the fragrance of death. We've breathed deeply, dangling there, waiting for modern science to pull us back up to the edge. There's the notion that if you let your fears gain the upper hand, you'll die a thousand deaths. I guess we're just saying that our fears require no leash. They lay obediently at our feet now. They're not going anywhere, and neither are we.

Still, it's more about rushing toward the experience than hanging back and hoping it won't notice you. When I taught at Harvard, I used to describe the German philosopher Georg Hegel in the following terms: his theory of semi-deterministic history is like being in a canoe floating down the river. You pretty much have to follow the course of the river. That much is set. However, knowledge of that river can be put to use. It just requires an aggressive acceptance of life's major outlines. Like the canoeist who paddles his boat to move faster than the current so he can steer within and across currents, if you want to move within your life – that determined progression from birth to death – you need to move faster than the current of events.

If you want control, you have to move faster than events around you.

Vonne and I have a number of ways of keeping our paddles in the water and moving: St. Andrew's; that comfort that only comes when talking with your parents and siblings; friends who step forward to treat you far better than you can possibly reciprocate; writing the updates; continuing to rehab the house; enduring your pregnancy; focusing on next steps for your kid, despite snafus caused by the chemo; and so on. All these things give us a sense of moving faster than the current – perhaps this new baby most of all. That first week in July is the purest expression of hope either of us will ever know. We knew exactly what we're doing by still trying to conceive. Amidst all that smothering fear and uncertainty, there was this strong sense of purpose that our love had created over the years. There was no debate, no questioning, and only superficial renderings of self-doubt. Instinctively, we knew then – and know now – that our survival depends on _moving faster than the current._ It's either that or kiss it all good-bye.

As far as Em is concerned, we're pretty much her paddles. Em's entire emotional support system seems buried somewhere in Vonne's embrace. She draws so much of her strength from her mother. Vonne is where she goes to retreat, to repair her spirit, to rest. It's very draining for Vonne when combined with her pregnancy – not to mention the degree to which I depend on her.

As for Dad, he pretty much does what dads do for little girls. He is the one who guides her through all the bad experiences in real time, playing both devil and advocate. The one who can scare her into stillness during a horrible procedure and then provide enough support to keep her fears at bay. It is a skill learned in the worst ways imaginable – nothing to aspire to. As with Vonne, it's draining, but at least you feel useful. Emily draws from me the courage to try new and scary things. It makes me feel good as a father, even if these feats only become real to Emily when she reports them to her mother. It would be easy to envy that mother-daughter connection. But all I need do is remember gazing upon Vonne at Paisan's, and then I feel grateful I was fortunate enough to recognize my future staring me in the face all those years ago.

I must confess: my drive for keeping a clean house has reached scary proportions lately. On the eve of visits to the clinic, I can only feel safe if the whole house is spic and span. That sense of mastery over things you can control is quite comforting. It's like you have to grab all the control you can because your absolute lack of it will be regularly shoved in your face in this cancer experience. Either way, Vonne says she'll keep me because I work so cheaply.

The beeper has worked out pretty nicely, especially as I spend more time out of the office. The pager has a weird feeling of a talisman; like I can leave all my cancer worries in this small electronic device. Then again, there's that feeling that this damn thing can reach out and grab you whenever it wants.

A tale of fate: When I was hired at my present job, it was only three days before the company was going to cap admission into the HMO they offered as part of their health care menu. It turns out their traditional insurance provider, Aetna, was forcing them to do so since the young and healthy were gravitating toward the HMO and Aetna was being left with the rest. A foresighted human resources person told me to take the HMO, since, if I didn't like it, I could always switch, but if I wanted it later it would be impossible to enroll. That advice probably saved us a great deal of money. As it turned out, our social worker Yvonne reports to us that our HMO, Group Health Association, offers the best coverage she's ever seen. Shortly after the diagnosis, medical giant Humana bought out Group Health, but we've been assured there'll be no policy changes in the near term, and we haven't seen any yet.

That's not to say that Dad hasn't picked up a part-time job of being regularly on the phone with Humana, Georgetown, Caremark, and various physician groups over recent months, or that it didn't take him several months and dozens of phone calls to whittle a $42,000 hospital bill to zero. Still, I would estimate our total exposure so far to be less than $250 in bills actually paid. Of course, we lose a lot in Vonne's wages, her progress in school, driving to Lombardi, parking at Lombardi (even at discount rates), all the prescription co-pays (even at a mere $5 a pop), and the . . .. Nonetheless, Humana has been true to its word in terms of providing comprehensive care. We'd cut a commercial tomorrow.

The Em-Cat hair watch continues. She's getting pretty darn fuzzy and – to our amazement – it's still quite blond. That's surprising because it always looks so brown as it comes in. We must admit, it's better to see it regularly burned off by the chemo and then spring back than it was last fall to see it fall out strand by strand. A pale kid with 30 or so single strands of pale blond hair is not a pretty site. In fact, it's damn spooky. Her buzz look is much better, and if she misses her hair, she can always play with her dad's now flowing mane. Call it projection, transference, whatever: the longer Emily is bald, the longer I grow my hair.

Vonne sees her midwife for what we assume is the last time this morning (30 Mar). Tomorrow is the due date. The midwife says she's now three centimeters dilated.

Well . . . [time passes dramatically].

Vonne goes into labor a few hours later. It starts up rather erratically just before noon, but gets serious around 2pm. An hour later, she pages me for the first time while I'm attending a conference on U.S. foreign aid. By 3:18 we agree that the show is on. A cab ride later and I'm home at 4:20. A few details to take care of, packed bags to load into the car, some quick food for Em and I, and then a phone-call to our midwife, the wonderful Linda Hewes, who delivered Em three-plus years ago. She listens to my description of Vonne's serious concentration, takes in the data on contractions, speaks briefly to Vonne herself, and says, "Head in now. This is moving too fast to last." Our friend Vickie Sands arrives at 5:25 to watch Em. We're out the door ten minutes later.

Somehow I manage to disable the automatic shoulder belt on the driver's side while getting into the Honda. For the first twenty minutes of the ride, the seatbelt alarm goes off like some sort of internal siren. Pretty neat! Finally I get the damn thing to shut up. We arrive at Arlington Hospital at about 6:15. Vonne is quiet the entire ride – not a peep. She simply closes her eyes and concentrates on breathing through the contractions, never losing her cool once.

We breeze through admittance because we're pre-checked. We get a big single birthing room with wood floors, a head, and lots of room with extra chairs. Two minutes after we arrive, in drops Linda. She spends the entire time with us, which is darn nice of her because it pushes the bureaucratic envelope. Humana recently decreed midwifes can do pre-natal work but not deliveries – go figure. So there we three are for the next hour, calmly chatting, keeping quiet during Vonne's silent contractions, and helping her with the fetal monitor when we finally surrendered to the idea of a baseline reading. Still, we demand to keep the door shut and the monitor's sound off (a truly useless annoyance). With Vonne emitting nary a sound, the scene's preternaturally serene. To pass the time, Linda quietly describes her philosophy of midwifery and natural childbirth. She also helps us interface with the nurse and OB – both nice enough ladies. I have my heart-to-heart with the obstetrician and all seems well (we're assured that no clock is running). At 6:45, Vonne is six centimeters dilated and appears calm.

We're in that quiet limbo until 7:20, when the water breaks and the news isn't good. It's full of meconium, or fetal fecal matter (try saying that fast three times in a row). Linda and I talk in whispers as we clean up the mess. Twenty minutes pass and it's 7:40. Then Vonne whispers that she's feeling pressure to push. At that point, she brushes off the doc and her personal history questions, dropping back into that sleep-like quiet that is the leitmotif of the Bradley method. Linda and I are tending to this and that, and all of a sudden – mind you, without even so much as a moan from Vonne – we notice the baby's head is crowning. That's when Linda suggests we let the OB join the party.

By the time the doc gets in, the head is all the way out and facing down. As before, I get stuck holding up Vonne's leg (this time the right one), as she's in the Bradley sleeping position on her left side. Then I see the doc dive in with clamps and a pair of scissors. Just before I'm about to yell about not wanting an episiotomy, I notice the cord is wrapped around the baby's head. Once cut, the baby is out in a quick splash. At that point, we know that Kevin Clifford Barnett is one big kid.

Well, the next two hours Kevin is pretty much out of our hands – save for a few bonding minutes. Not to our liking, but necessary as he ingested the meconium into both his digestive and respiratory tracts.

In the end, Vonne pulls it off without one yell, one grunt, or one second of lost composure. She's a marvel to behold. Linda is stunned even more than the first time, but simply notes that Vonne is someone with a great amount of physical and mental self-mastery. She declares it a stunning performance from start to finish. I can't agree more. No nurse on that floor that night can believe that a woman delivers a 9 pound, 11 ounce kid without any meds or apparent discomfort. They go on and on about it at their station for some time afterwards. Vonne is up and walking within an hour, eats a meal, and breastfeeds a very hungry Kevin at 10:30.

The little man's official time of birth is 7:44pm – mere hours before the due date of 31 March. Emily herself was born at 7:50pm, mere hours before her own due date. Vonne is indeed the master of self-control and timing. Fitting her mania with never being late, she always delivers a few hours ahead of schedule.

The next evening Em and I swing by the room to pick up mother and child. We're all feeling pretty satisfied tonight. One down, one to go.

