Serial 8:11 of "The Emily Updates"
Sharing a 30-year-old diary of my firstborn toddler's cancer battle
Chapter 3
Many Deadlines, Two Lifelines
Emily Update #7 (27 February-6 March 95)
Emily makes her very first visit to the dentist on Wednesday (1 Mar). Our pediatrician has strongly advised this, as chemo can dramatically impair oral hygiene due to the mouth’s many fast-growing cells. To protect Em on the eve of her round, Lombardi has us give her heavy doses of a special antibiotic just prior to, and immediately after, the exam. The dentist says everything looks good for now, but he wants to see Em every three months through the chemo protocol. He warns us that serious problems can erupt overnight due to the chemo, so we’re instructed to brush her teeth at least twice a day and to rinse nightly with a special anti-bacterial fluoride mouthwash. We’re also supposed to keep a close eye on her mouth and bring her in immediately if anything looks odd. Something else to worry about, and yet, as with so many other potential side effects, Emily is doing amazingly well so far – knock on wood. She’s pretty brave during the exam and teeth cleaning, and the techs really go out of their way to treat her like a star. Even better, the dentist displays a serious knowledge of cancer treatments, so we feel very good about the whole experience.
Vonne has a pre-natal check-up on Thursday and the news makes Dad’s spackle knife and paintbrush move faster – the midwife touches baby’s head! Another bald kid waiting in the wings! Vonne is already one centimeter dilated, and the baby has – as they say – dropped. The news definitely dials up the excitement level in the house. Em is furiously attempting to try on every piece of baby clothes she can lay her hands on. Apparently it’s her way of dealing with the anticipation.
Emily engages in her usual, pre-round-week stuff: demonstrating high energy, eating like a pig, and, unfortunately, ripping off her bandages almost every night. On the last point, it seems she’s just fiddling, as there’s no accompanying angst.
Our nerves become more frayed as the round approaches, but we have plenty to keep us busy in the days leading up to the 6th. Nona Vonne arrives for a well-timed visit, and, as usual, airlifts gallons of spaghetti sauce in her carry-on luggage. A flurry of orders goes out to Caremark, our homecare provider, for new supplies as we gear up for our nurse visits. Meanwhile, I’ve been slaving away in the basement on our future family playroom. Home projects wait for no man – nor cancer.
Em-Cat stays busy with her new trike, keeping us all on our toes as her steering can only improve. As with all things Emily, once started, she focuses on the new skill like a laser until she gets it right, and then it’s all, “Go away and leave it to me!” Emily definitely exults in these brief moments of independence – no procedures, no IVs, no Nothing Per Oral. Not that the child ever drops out of character, as demonstrated by her flawless readings of “I love you Daddy!” delivered immediately after ramming her trike into some antique furniture. Oh what the hell! It only makes sense she uses every trick in her bag during a fight like this – especially on us.
Caremark’s weekend nurse performs a blood draw in our kitchen Sunday afternoon. We likewise manage to get some pee out of her. Both are picked up by a courier service around dinnertime. This is our first time doing all these pre-round collections at home. It should make tomorrow’s clinic trip a whole lot easier.
The following morning (6 Mar), Emily starts the third-to-last round of Adriamycin. This begins week 32 of 65, with 33 to go. After this round, five remain.
Nona Vonne volunteers to come along with Em and I to the clinic. We get word from Lombardi during breakfast that Em’s blood numbers are big, plus her urine looks good. This round is a go. After some debate, we paint her face up like a Bengal tiger – an oldie but a goodie. Traffic is fast, so we spend some time in the clinic playroom before the staff turns up. We get an IV started at about 10:30, and run the Zofran by 11:00. The Adriamycin shot takes about 10 minutes. Adriamycin looks just plain scary. Its florescent, orange-red color makes it look like some B-movie prop.
While at the clinic, Dr. Gootenberg has me speak with a young researcher from the National Institutes of Health (NIH) who is working on Wilms’ Tumor. Dr. Joe asks me to recount our discovery of the disease. Because Wilms’ is so rare, most researchers have little access to actual patients, and since they’re all pre-school, only parents can relay substantive info. Well, the medical jargon starts flying once I launch into my standard spiel. The NIH doc is particularly fascinated with the small tumor on the end of Em’s kidney. He agrees that we were immensely lucky to have seen it under her skin. That part of our story still knocks Vonne and I for a loop every time we think about it.
Emily never would have seen her third birthday.
Once back home, we’re on the Zofran clock. As with all rounds, Em takes this anti-nausea drug 24 hours a day. Actually, we give it to her over 25-minute blocks three times a day. We get a supply of these IV packs from Caremark at the start of the round. They look like a woman’s breast implant – a circular bag filled with a clear liquid and an IV tube running out of it. We keep them in the fridge and break one out several hours before the dosage is due. If it’s cold, it takes longer to go in.
Administering Zofran is pretty simple – by design. First we attach a special plastic needle-adapter onto the end of the Zofran line. Then we prime the IV tubing, or let the liquid pass down to the plastic needle. Finally, after flushing Em’s red catheter line (the wider of the two), we screw on the needle-adapter – like a nut on a bolt. The Zofran pouch sits in this high-tech, hard-plastic "can" that’s shaped like a cold cream jar. The container’s screw-on top features a spring-loaded compression mechanism that squeezes the pouch at a constant pressure. Once we unclamp both IV lines, the pump runs without any hands-on attention. There’s a small indicator on the bottom of the pump that let’s us know when the pouch is empty. We wrap it up by clamping Em’s line, detaching the pump’s IV, and flushing the catheter tube with both saline and Heparin. The pump kit goes by the name Sidekick. Cute.
Three such procedures every 24 hours, plus the requisite flush of the white catheter line, and we’re drawing up 10 syringes every day during the round. The Sidekick is quite portable. Em puts it in a little "purse" that hangs around her neck and goes about her young-kid business. We’ve actually gone to the playground with it running. More often, though, we do it while she’s asleep. I start the pump at 6am when I get up, then detach it after I’ve showered and gotten dressed on my way to work. Vonne does the mid-afternoon dose, and then I do one around 11pm before going to bed. Very neat system, and the drug’s been a godsend in keeping Em’s distress to a reasonable level. With it, she still can’t eat but she only occasionally vomits.
A strange thought, but I like the chemo rounds better than the breaks. I feel happiest when drawing up syringes. I feel connected and useful, like the battle’s being engaged and the tension and worrying count more. I feel progress and action. I think that’s why Vonne seems happiest when our wonderful homecare nurse comes. It’s not just the friendship Kathie offers, but also the sense of accomplishment that her visits represent. Strange, but Vonne and I seem most at ease during the worst points, like the midnight dash to Georgetown for platelets. Neither of us would have missed it for the world – a strange highlight for a strange year.
Even scarier thought: some day we’ll miss all this excitement and drama, even as it drains us badly and poisons our souls. This is life – with a capital L.
Now I know why my Mom never watches certain TV shows or movies because of past events with her kids. I’ve brought myself to watch Chicago Hope once and ER twice. Vonne’s less squeamish on the subject, but I get too wound up watching medical stuff right now. We both just finished an early Michael Crichton novel about abortion, written in 1969. The book starts with a detailed description of a lung biopsy, which took me back to early July with a jolt that left me gasping. The one movie that really got me recently was Star Trek Generations – of course! The scene where Captain Picard describes his grief over his dead nephew really broke me up because he contemplates all the things the child would never experience in life.
That image reminds me of a spooky dream I had last summer, just days before the diagnosis. Vonne and I were both a bit unnerved by it. I had the dream the first night Emily and I spent in Boscobel on that fateful trip. Perhaps it’s being home, but I dream about a man who comes to me and says he can guarantee Emily lives to be 30 years old without any harm happening to her if I make the following pact – I forego the experience of living the next 28 years. As far as I will know, time progresses immediately to the point of Emily’s 30th birthday. She and everyone else experience time normally, but it’s gone for me. I’m told I can research those lost years and discover whatever I can about what I did and experienced, it’s just that I must skip living them. This is the trade to guarantee Emily lives to age 30. I think, geez, this is one strange offer, but what parent won’t seriously consider it? In the end, I say yes and the dream ends with me feeling good that Emily’s made it that far without harm, that somehow I’ve fulfilled my parental duties. Looking back, I can only imagine that being home made me think of what it is to be a parent for the long haul – the fears that never go away no matter how grown up your kids are.
Two odd bits from the mass media recently catch our attention due to Emily’s cancer. The first is a profile by ABC’s 20/20 of Caremark, our homecare provider. It’s about alleged Caremark kickbacks to doctors for signing up elderly patients, as well as the alleged exorbitant costs of medical supplies that Caremark supplies.
Needless to say, next morning I’m on the phone to Caremark and my HMO. First off, all Humana patients go to Caremark, so kickbacks can’t be an issue here.
Second, on the cost of drugs and supplies, our HMO has a fixed-fee contract with Caremark, so we get whatever we need from them. If Em ends up costing more than the average chemo kid costs, then Caremark eats the difference and factors her data into their future negotiating figures. Caremark’s patient rep, Chuck, is aware of the profile and naturally feels it’s one-sided since it compared Caremark’s drugs and supplies to those of the cheapest discount drugstore, point being that we pay extra to have it all available and deliverable to our door on a short-notice, 24-hour basis. Another point to consider: when compared to hospitals or clinics, Caremark costs a lot less. That’s a more illuminating – and fair – comparison.
For us there’s no big issue here so long as Humana is happy with Caremark and all bills are paid on time. We’ve been very happy with Caremark to date. The supplies are fine and are readily delivered. Nurses Kathie Clemens and Margie Halverson are great. The convenience of avoiding trips to Lombardi for minor things is huge, not to mention the constant danger of being exposed to sick kids. All the proof we need is that we’ve kept Em free of major infection and out of the hospital so far, and Caremark has been a tremendous asset in this effort. We can’t imagine the whole ordeal without them.
The other media item is spookier: a Journal of the American Medical Association (JAMA) article on possible links between pesticides and pediatric cancers. We had the house done up for termites last spring – a few months before Em’s cancer. They drilled the foundation and basement floor and pumped in the anti-termite stuff, but nothing where any one of us was exposed to active pesticides (defined as being still wet) since it was all underground. Standard stuff for around here, where cancer rates are normal, termites are very bad, and we live in the middle of old woods. Still, it sticks in the back of our minds since Em’s diagnosis.
We check it out and feel vaguely better, but basically because our ignorance is bliss, because nothing about how Wilms’ starts is clear. First, the JAMA article doesn’t relate to Em’s particular cancer (too rare). Second, these studies are frustrating since they’re all about tenuous linkages – namely, higher levels associated with direct exposure. That’s as far as it goes in these studies: they pinpoint one aspect among thousands in a normal life and then declare a significant association with increased risks. Lions, tigers, and bears . . . oh my! Problem is, there’s only about ten thousand other intervening variables to consider. So what to do? Never eat hot dogs? Throw away your cell phone? Avoid them ruby slippers? Third, the details of the termite stuff put us in the clear: no direct exposure. The pesticides in the story are those sprayed broadly in yards where kids play. Anyway, our oncologists see no connection, since Em’s cancer is congenital in origin. We haven’t heard from the geneticists yet, who supposedly still work on our case, but all their questions were about the mother’s exposure to chemicals during pregnancy and Vonne had none. Not wanting to drive off on any useless guilt trips, we let the matter drop for the near term until we hear more from the geneticists – those paragons of vagueness.
Still, explanation is in order to make clear both our desire to learn more and our frustration with how little the doctors know about Em’s cancer. Wilms’ Tumor was discovered in 1889 by a German doctor named Wilms (duh!). Until the advent of chemo in the late 1940s, it was universally fatal. The distribution is equal by sex and race across the entire world, which is very unusual. It strikes overwhelmingly by age five, usually starting around age two. It’s now the most well understood cancer in terms of knowing how to kill it (success rates approach 95 percent for lower-stage cases), but knowledge as to how it starts remains incredibly murky.
Doctors now believe that most Wilms’ kids suffer from nephroblastomitosis – a condition in which fetus-like cells abound in the kidneys until about age 5. Fetus-like means they divide more rapidly than normal cells, placing them closer along the spectrum to uncontrolled cell division – otherwise known as cancer. Doctors think that perhaps a large percentage of kids have this condition. The ceiling percentage is a guess since there’s no reason to go checking out large numbers of kids about such a rare cancer. However, they do know this: everyone has a special gene designed to suppress uncontrolled cell division of such kidney cells.
So it comes to this: doctors don’t know how nephroblastomitosis leads to Wilms’ or why the suppressor gene sometimes fails, or what combination of those possibly triggers cancer. Only a tiny percentage of Wilms’ occurs among siblings (1-to-2 percent), so doctors believe the genetic link to be very weak. Yet, no environmental causality has been found significant either. Vonne or I may have a bad, or defective gene bouncing around in our families, or maybe we both do. But since none of Em’s sixteen cousins have had Wilms’ and most are past age five, this line of reasoning likewise seems weak. Neither family can recall a Wilms’ case – ever.
Another theory says Vonne or I may have a gene that was damaged in some freak accident – the stray gamma ray. In my mind, that launches us into the stratosphere of chaos theory: the butterfly in China flaps its wings, the bolt of light strikes me, and Em gets Wilms’. Unfortunately, that’s the state of knowledge right now. We guilt-trippers typically want the answer so we can assume blame, but no one has any to offer, and possibly never will in our lifetimes. Em got a one-in-a-million cancer and no one can tell us how. I suppose that only makes sense.
From the start of Vonne’s pregnancy, both the geneticists and oncologists have made the point of saying that we should be very happy to have a second child. That child may have a slightly above normal chance for Wilms’ (say, 1.01-in-a-million) and we, along with our pediatrician, will take suitable precautions during his or her early years. Of course, the odds of us having two cases of Wilms’ are astronomical – until Em gets it and then it’s just 1-in-50. Believe me, hitting the daily double seems less fantastic once you’ve struck the jackpot.
Speaking of things we can’t stomach makes me think how compulsive we suddenly are about following any story where the kid needs the transplant . . . or the bone marrow, platelets, blood . . . or the insurance to pay for any of these. It’s a morbid fascination, since we fear being drawn into such a drama ourselves.
I knock on wood more than a termite inspector.
I donated platelets again this week. When I started doing it early last year, I had no idea how close to home the issue would someday strike. The process, which takes about two hours, clearly carries far more meaning for me now. It’s no fun to lie around for two hours with a big-ass needle in your arm, though you get to watch a video. Frankly, I take my relaxation where I can get it. Still, as we know from Emily, this stuff is a lifesaver in many instances. Since platelets have a short shelf life, the Red Cross typically knows where it’s going by the time of donation. It’s often a kid exactly like Em – fighting cancer. Our girl has received two platelet transfusions so far and both were serious situations. I’ve donated afterwards each time, both to pay back the system and because it makes me feel good.
Enough for now. Remembering our sober rule of thumb – last round’s floor marks the next one’s ceiling, we steady our nerves for the inevitable decline. The roller coaster approaches the top and – as always – my stomach tingles in sick anticipation.
Emily Update #8 (6-14 March 1995)
That first day of the round is always so anti-climatic in terms of Emily’s immediate reactions – thank God. If anything, Em’s nervous energy gets the better of her. This time around, she’s a wildcat who runs Nona Vonne ragged until finally coaxed into bed around nine. Is this significant? You bet. Putting aside the scary question of unseen damage to the heart, plenty of kids suffer serious side effects soon after getting Adriamycin. The oncologists are always visibly pleased at how Emily breezes through the actual shots. Naturally, each time is a new chance for disaster, and we remember that this is a cumulative process that grows worse with time. Yet every day we escape is one less day to die – from a mistake, a stray virus, or the invisible clock simply running out. We’re marking time – gratefully.
From day one back in the hospital, we’re told that Em’s overall strong health and boisterous spirit are her greatest assets in this long fight. If there is one thing that Vonne and I are proud of, it's how we’ve preserved that asset base so far. Em-Cat is running into a stiff wind throughout, so her capacity to persevere with a positive outlook remains essential to her eventual cure. Again, surviving Wilms’ is surviving the cure. It’s kill or be killed, all right.
Emily takes the Adriamycin at home today (7 Mar) just fine and continues to eat normally until bed. The Zofran is working its usual magic. We know how important that magic is, since the two times we didn’t use it during last summer's radiation sessions were the two times Emily suffered prolonged vomiting bouts. The null hypothesis has been proved beyond the shadow of a carpet stain.
Our minds often wander back to the radiation therapy. Em's blue-dot tattoos are a constant reminder that we might someday revisit that particular agony. No one’s ever mentioned when we might think of taking them off, and we’ve never asked. That’d be like tugging on Superman’s cape, or spitting in the wind. You keep your head low in this business. Still, every time I undress Em and see those dots, it sends a chill up my spine. They’re like big arrows that say, Insert Death Here.
Thanks to Nona Vonne, Emily has – from day one – referred to the tattoos as her “beauty spots.”
The radiation sessions are the strongest memories from that dark period of the chemotherapy’s rapid-fire induction phase (late July through early December). The routine was all preparation and then – zap! – almost instantaneous application.
After the first, in-hospital session, the outpatient septet went like this: every morning we got up at 6am and gingerly packed Em into the car, the back seat sheathed in heavy plastic. We arrived at Georgetown at about 7:30 and went through the daily rigmarole at same-day surgery check-in. Emily, in great distress throughout, usually pretended to sleep in my arms, often making me carry her around the darkened, empty hallways while I hummed favorite songs. Once admitted, we’d head to nuclear radiation and check in there, where we’d wait for 10-to-15 minutes, and I’d attempt to divert Em’s attention by treating her to blistering stroller runs down long corridors. Vonne would often explain the paintings in the waiting area.
The nurse, Joanne Montana, and anesthesiologist, Dr. Richard Hetherington, who processed Em first thing every day, were truly wonderful people, as was the lead nurse in peds recovery, Donna Mistretta. Everyone went out of his or her way to treat us all very warmly. When the time came to carry Em into the cavernous treatment room, all the techs, nurses, and docs would gather around and comfort Em as Hetherington turned out her lights while Vonne and I embraced her tightly and covered her with kisses. When she was completely out, they’d carefully pull off her clothes, lay her ever so gently, and strap her down with a myriad of restraints and tape. It was all done so lovingly and with such sensitive grace that it was an oddly beautiful performance to witness, despite the horror of what came next – or probably, precisely because of what came next. It always plays back in my mind as this dark ballet, right down to the classical music wafting in the background.
At this point, Vonne and I would walk out quickly – not daring to look back – and get some coffee in the lounge. Vonne would spend the next five minutes staring at her hands, me at magazines. Then nurse and drug doc would briskly wheel Em out of the radiation suite across to the CCC building and peds recovery. After all that preparation, the treatment itself consisted of the personnel going to a control booth and pressing a button that started the 60-second, computer-driven delivery. We’d be out of recovery in about 30 minutes and I’d be in my office by ten. Meanwhile, Vonne did the dirty job of driving Miss Emily home in the Honda – before any eruptions.
We did that routine seven times over nine days, following that first session in the hospital. Each time we handed her limp body over to the Georgetown people, we’d fight back the tears and say to each other – as we trudged down the long hallway – that at least we’d soon be one treatment closer to the end. Those were sad and painful days. It’s like they happened yesterday – and about a thousand years ago. I’m losing the ability to remember those parts of my life that aren’t about Emily’s cancer. It’s becoming the black hole of my memory: nothing escapes and yet it’s so dense that everything else is crowded out by the darkness. It feels like all I know anymore.
Strange, but I always thought I had so many sedations in my life (seven). Emily has already been put down a total of 18 times over the past 8 months: two surgeries; four CAT Scans; 8 radiation sessions, plus the test run; and three other diagnostic procedures (EKG, bone scan, and bone marrow tap). She’s come out of each one like a real trooper. Good thing she doesn’t know how to swear, though.
People ask, “Is there any more cancer left in Emily? Have the doctors checked everywhere?” We can put it this way: while in the hospital last July, Emily had X-rays over the length and breadth of her body, an ultrasound, two CAT Scans, and a whole-body bone scan. Since then she’s had a flat-chest X-ray, two more thoracic/abdominal CAT Scans, and a bone marrow test. So, indeed, she’s had the complete battery of tests typically employed to see where this type of cancer has spread. We know from the most recent scan that she’s free of identifiable cancer sites at this time. The chemo therefore represents – in length and severity – a relentless series of search-and-destroy missions throughout the body to kill any rogue cancer cells that may be hiding and waiting to re-trigger the tumor-creation process.
So now we’re basically into saturation-bombing raids, even though Em appears – by all measures – cancer-free. Why? Because five decades of testing on thousands of little kids tells us this much and no less. Believe me, the docs already know the no-more amounts. We just have to trust them on their current, bare-minimum calculations. It’s an ongoing experiment, and it always will be.
Back to the real-time narrative: we expect Em’s immune system to crash in a couple of days and reach absolute depth over the weekend and early into next week. That was the pattern of the last Adriamycin round and we expect at least as bad this time. Hopefully she’ll recover much ground before Vonne goes into labor. We’re only about two weeks from the due date, but we’re praying for a lucky break here.
Nona Vonne’s visit is tremendous. She puts in long hours every day, watching Em and cooking up a storm. Among Nona’s many coups are teaching Em to rinse and spit her special mouthwash, and riding her trike. Meanwhile, Dad lives in the basement like some handyman and only comes up for air and food every so often, but at least now we fear not baby – we have PLAYROOM! Mom gets some last minute shopping done and rests as much as possible.
Thursday night Vonne and I see a birthing film with a Bradley class of first timers at the home of the instructor with whom Vonne recently took a refresher course. As we impart our collective wisdom to the novices, we find our words tinged with a deep nostalgia and sadness – remembering what a perfect little baby Emily was. We’d love to be that lucky again, but a certain somberness has attached itself to the process. We now know what a non-guarantee such a nifty debut really is. One expects Phil Donahue to extend his mike to some lady from Piscataway who tells us to Stop feeling sorry for yourselves and get down on your knees and thank God you can have another baby cause my daughter can’t! And blah, blah, blah! Perhaps all true on some level and yet the feelings are there, so shut up Piscataway! Watching the birth film leaves us both so emotional from reliving the experience. It’s still the most purely positive experience from either of our lives and thus we’re deeply excited. And if all that sound like we’re being pulled in opposite emotional directions, then . . . I’m getting better at this writing stuff!
After a brief respite last week, Emily is once again secretly ripping off her catheter bandage on a regular basis, usually as she lies in bed at night. She feels bad about it and knows it’s wrong, but we’re at a loss about what to do after trying all the tricks relayed to us by nurses. There’s so much danger involved with infections, but at least we always catch it within an hour or two. We talk to Em about it at great lengths, but try explaining to a three-year-old the risk of dying from just pulling off a Band-Aid! We go to absurd lengths to supervise her, but alas, she does it anyway. We suppose it remains her one clear moment of control in all of this, although it’s tempting at times to read a darker interpretation into some of her explanations.
Sometimes I think Em can’t take it anymore and wants to sabotage the process – even herself – on some sad, pathetic level. Other times I’m sure. Naturally, this is not the kind of discussion any parent dreams of having with his or her three-year-old, but such is our twisted world right now. Of course, we forgive her anything, and since we just want to keep her alive, we hope someday she forgives us all the screaming, all the threats, and all the times we just plain lose control.
Then again, sometimes a banana is just a banana. Em has always loved taking apart intricate things. So we just jut out our chins and persevere with her often-disheartening- but-usually-just-annoying behavior. Hopefully, nothing will ever come of it other than us using up our bandage supplies faster than anyone on record.
As I finish this update, Emily’s entering week 33 of 65, meaning she’s just past the halfway point in her chemotherapy. The projected end date remains 27 October – a mere 226 days away. Who’d have thought that a bunch a guys sitting around a table back in 1969 could have predicted what life would be like – day-in and day-out – for all of us 26 years later? But chemo protocols are like that, and we’re grateful that hers is carved in methodological stone. No experiments for us – please.
Meanwhile, Em is fading fast and the crabbiness factor is starting to skyrocket. Thank God she’s finally connecting with Mary Poppins. Now there’s a lengthy song list that’ll keep her busy for a while. I swear, with her mania for show tunes, someday she’ll pen Wilms’ Tumor – The Musical!
