Serial 2:11 of "The Emily Updates"
Sharing a 30-year-old diary of my firstborn toddler's cancer battle
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 rallier, 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 ahead: “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?
