Serial 9:11 of "The Emily Updates"
Sharing a 30-year-old diary of my firstborn toddler's cancer battle
Chapter 3 (continued)
Many Deadlines, Two Lifelines
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 they 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.
