Serial 5:11 of "The Emily Updates"
Sharing a 30-year-old diary of my firstborn toddler's cancer battle
Chapter 2 (continued)
The Past as Prologue (II): Descent
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: things 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 backwards, 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.
