Serial #4:11 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
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 (Steve Grundman’s spouse Linell) 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 (the Grundmans) 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,” Hoy 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 is. 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.
