Serial 6:11 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 #1 (17-24 January 1995)
To start with some perspective: Emily is in week 26 of a 65-week chemotherapy protocol. She has received, as of this Tuesday morning (24 Jan), 31 of 65 planned doses, with four more by week’s end. That leaves her 39 weeks and some change to go, or 275 days in all. Dosage-wise, she's about half way through. It’s just that the chemo is more spread out now. After the July radiation sessions and the heavy, 13-week chemo induction phase, she's now in the round schedule most people know – that is, multiple shots over a week (the round) and then 5-to-6 weeks of recovery.
After finishing this week’s round, Em has six more to go. Her last scheduled shot is currently set for 27 October. She endures two types of rounds and they alternate. The current round involves two drugs: Actinomycin D and Vincristine.
Actinomycin D is classified as an antibiotic. A workhorse chemo dating back to the 1940s, it has the usual chemo effect – it screws up cell division. Since cancer is basically rapid, uncontrolled cell division, cancerous cells are most disrupted, and as a result are hopefully wiped out. Of course, chemo’s effect is body-wide, so lots of cells are disrupted, especially fast growing ones (e.g., digestive tract, hair, orifices), in turn accounting for such common side effects as loss of appetite and hair, and dental problems. It’s no pain, no gain, and D stands for deadly!
Vincristine is an alkaloid derived from the Vinca, a poisonous plant found in rain forests. It works, like the other two drugs Em receives, quite well on Wilms’ Tumor, especially in concert with early radiation. Side effects are basically the same, although Vincristine creates neurological problems involving coordination.
Actinomycin-Vincristine rounds go as follows: both on Monday, Actinomycin-only on Tuesday through Thursday, and both again on Friday. According to our routine, only the Monday doses occur at Lombardi in Georgetown. Our homecare company delivers the rest (we store in fridge) and then our homecare nurses (typically, former peds onc) administer them in our living room.
Getting weirder, huh? Needless to say, we have a lot of medical equipment at home.
I take Em to Lombardi on Mondays and then work late. Vonne oversees the homecare visits by our primary nurse, Kathie Clemens, who’s very important to us. She’s our advocate within the homecare company Caremark. She makes it all work.
The alternate round is Adriamycin – the really scary one. It’s measured in lifetime doses because it destroys heart cells, leading to catastrophic failure at heavier amounts. Em is receiving 275 micrograms. The odds of heart failure are guesstimated at about 1-in-10 at 550, about 1-in-1,000 at 450, and about 1-in-one-million at 350. It’s virtually unheard of at 275 micrograms; it’s never happened at Lombardi. It still scares the crap out of us, though. It’s so potent an antibiotic that it must be pushed through an IV flow over a ten- minute period or there’s a risk of immediate cardiac damage – or even failure. Don’t try this trick at home, even though we do. The Adriamycin rounds are three shots over three days, so they end by Wednesday.
In general, the rounds follow the same timeline. Week One is the chemo, when Vonne and I give Emily an anti-nausea drug through a portable IV pump every 8 hours around the clock. In Week Two, Em and I head into Lombardi for an exam and blood draw on Monday. Then Kathie does a blood draw at home on Thursday. We continue this weekly routine until Em’s immune system recovers.
So far, Em’s held off going neutropenic (i.e., dangerously immune depressed) until Week Three, but this comes on faster with each round. When Em-Cat is low on neutrophils, a cold-segueing-to-pneumonia could easily end up killing her. In fact, the majority of Wilms’ Stage-IV deaths occur this way, with most others resulting from chemo toxicity (i.e., the kid is basically poisoned to death).
Once a universal death sentence, Wilms’ Tumor itself kills in relatively few cases nowadays. But make no mistake, there’s no living with this cancer. It’s kill or be killed. Winning means surviving the cure, which – tough as it is – beats the hell out of the alternative.
For now, Emily is not showing much vulnerability to toxicity, so her fate rests largely in our hands - namely, keeping her healthy during immune depressions. These phases usually last 12 to 14 days, although that's stretching with each round. When the blood numbers get back up, Lombardi usually cuts us loose (no blood draws) for the rest of the round, or anywhere from 7 to 14 days (although that's shrinking with each round).
During these short periods, all is pretty normal. We struggle over potty training (she can do it, she just doesn’t see the point). We get together with friends (no one can be sick, of course). We go a few places with great care, have as much fun as possible, and fatten the little kid up. Of course, we flush her chest-catheter tubes every day with syringes and change her site dressing every day or two, with accompanying shower. But other than those considerations, life seems pretty normal. I mean, we get out of bed every morning, so it can’t be clinical depression, can it?
Emily continues to grow: half a centimeter since December and now topping 38 inches. Her weight is finally catching up – 32 pounds. She'll probably remain bald for the entire year. She kept her longish blond hair through the first 13 weeks of chemo, but it all fell out with the first Adriamycin round after Thanksgiving. In between Adriamycin rounds she grows it back, but it only amounts to a yellow fuzzy helmet and then it all comes off again.
As for the R (remission) or C (cure) words, there's no talk of even the former yet. She’s had multiple CAT Scans of her chest and abdomen since July, including one this week. They show the following: the right abdomen remains clean, as is the surviving left kidney, which continues to handle the extra work load with ease.
Emily’s lungs also look good. Before radiation, the right one still held three small metastasized Wilms’ Tumors. They're completely gone now – no trace remains. This is good because the national council would have considered another surgery to remove even dead tumor tissue – just to be extra careful. As it was, Em was bent over for many weeks following the thoracotomy on her left lung, which also remains clean – with one key caveat.
The CAT Scans show a shadowed area (soft tissue density) in the same area where the tumors were. It’s fairly noticeable in last August’s scan, but it’s shrunken to the point of immeasurability in this week’s. What is it? We’re not sure. Maybe pre-cancerous, but that’s unlikely. The doctors believe it’s either a bit of lung that collapsed during last July’s surgery and is recovering slowly, or simply scar tissue that’s healing. The big point is that it’s shrinking.
If the tissue density is cancerous on some level, then this is why we’re still employing the chemo in its body-wide, search-and-destroy mission. When you see kids run away from home to quit the chemo, or parents stopping the chemo to pursue alternative medicines, this is the trap they fall into: namely, assuming the cancer is gone because there’s no clear evidence it’s still there. But this repetitive, saturation bombing with chemo is crucial. Not one cancer cell can survive. That’s all it’ll take to kill Em.
As for lingering effects from the radiation, for now Em’s lungs show a certain swelling that is normal. This should go away with time. So-called late effects, or lasting damage or complications, show up in a year or two – if at all. We burn that bridge when we get to it.
For now, no door has been shut on Em’s eventual cure, however many compromises ensue. As Dr. Gootenberg says, “We are all working to the same end and everything seems to be going okay. That’s all we can say.” Success to date guarantees nothing in the long run, just a small measure of optimism for right now. But that allows us to dream the best possible path for Em, and your future needs hope when your present lacks joy. Giving up is not an option – just a constant temptation. We live lives of constant emotional exhaustion.
The good C word remains unthinkable for two years after diagnosis – or July 1996. Wilms’ Tumor deaths typically occur within two years of discovery. If your kid’s cancer-free at two years, you’re gaining on the cure – not that you’ll ever hear oncologists use the term. Roughly speaking, two years with this cancer equals five years with most others. Wilms’ is so aggressive and fast moving that you either beat it or die within 24 months. Relapses occur in about 2 to 3 percent, and those kids usually die. Overall, the cure rate is 90 percent and climbing for Stage III and lower. For Stage IV, the numbers slip to 80 percent. If Emily is going to be that one in the 1-out-of-5, she’ll probably die this year. We are killing time – one way or another.
Em’s CAT Scan yesterday is one long unpleasant experience. Em and I endure two hours in rush traffic to reach Georgetown for the 9am medicated slot. Problem is, the techs don’t expect us, though the front desk does.
“We can reschedule you, Mr. Barnett.”
I smile like a crocodile and inform them that their lives will be a living hell if they don’t work us in today. Meanwhile, we head to Lombardi to receive Em’s chemo, getting the peds onc nurses to ream out Radiology over the phone for good measure.
Back to Radiology: the peds nurse, Teresa Proctor, instructs me to get a substantial load of liquid contrast down Emily, using Ginger Ale. Em hasn’t had anything since nine last night. Forcing a carbonated beverage down a queasy kid is tough, especially when it tastes like crap. Em does her best and then some time.
We wait four more hours for the CAT Scan, necessitating still more contrast. At one point, I’m so mad I blow up in the face of the unit administrator who’s been called out to deal with me. She’s shocked to the point of backing herself into a wall and bumping her head. I am really losing it. Then a spot opens up briefly, but to grab it means foregoing sedation – something we’ve never tried. I agree in desperation.
Emily is clearly nervous at the prospect of doing it live. She asks many questions and makes many brave declaratory statements (“It is very loud, but not too dangerous!”). Yet the task is just too much for her: lying perfectly still for 20 minutes as the motorized table inserts her – engines roaring – numerous times through the Cat Scan’s large "cave." On a Freudian level, I myself find it all almost unbearable, but then I’m her Dad. Anyway, Emily breaks down and we end up sedating her right there on the table. Afterwards, Proctor wants to send us upstairs for a couple of hours while she recovers. I’m having nothing of that, and use an old nurse’s trick of rubbing Em’s earlobe to end her slumber. Once awake, she wants out like crazy.
Emily deliriously sings Disney tunes all the way home and then demands a McDonald’s Happy Meal, which she gobbles down. Proctor predicted Em wouldn’t want to eat for several hours – go figuh! Em-Cat spends the evening running around playing with her animals while I lay down, suffering from nervous exhaustion.
Emily Update #2 (24-31 January 1995)
Em is now in week 27 with 38 to go, or 270 days in all. She remains hospital-free since her July diagnosis, which we hear is a huge achievement. So many peds onc kids spend a lot of time in hospitals. Every time we hang out at Vince’s (my Packer fan nickname for the Lombardi Cancer Clinic), we hear hospital “war stories” from burned-out parents. They scare crap out of us and we’ll do damn near anything to avoid a similar fate.
Equally good is that we’ve suspended the protocol only one time – for only one week. That lapse occurred at the end of the 13-week induction phase in late November, and coincided with the farthest mark of the radiation therapy’s long shadow of immune-system distortion. The suspension happened when Em’s blood was too weak to start the first three-day Adriamycin round. Even so, we’ve done 27 weeks of the chemo protocol in 28 weeks of real time, and that’s especially good. The key to the cure is navigating the protocol as close to schedule as humanely possible. Over 30-years-in-the-making and over 25-years-in-the-refining, the protocol’s essential truth is well known: stay the course and you get the best chances.
Also good is that Em has only had two transfusions (one each of platelets and packed red blood cells) during those dark, bottoming-out days last November. In neither instance could we – or anyone else – have donated the blood fast enough to suit the docs’ purposes. They wait until it’s absolutely necessary, and then they want it done pronto – as in, that very hour. Moreover, I won’t donate any blood products out the fear that pre-exposure to my blood will render me less useful as a marrow source later on – if we come to that fork in the road. Vonne is Rh-negative, so she’s out of the running. Of course, once the baby is born, he or she may be the best source – or maybe not. If it comes to that, we can remove marrow from the infant with no harm or major stress. It’s been done plenty of times and it works.
People often tell us spontaneously that we need second opinions: “How can you just trust these doctors at Lombardi?” Another one we hear is, “Why not take Em to St. Jude’s in Memphis and get this all for free?”
People need to know that the National Wilms’ Tumor Study (NWTS) council based in Vanderbilt University (Tennessee) is still overseeing Em’s treatment. This group of top researchers from across the country collectively oversees the large majority of Wilms’ cases in the US. They make all of the big decisions with – of course – clinical input from our Lombardi team. For example, it was the council’s decision to use the white-cell growth factor G-CSF during Emily’s November suspension. More broadly, Emily is entered in the fifth seven-year round of the national NWTS study that further refines the protocol. That is a big picture, and we’re part of it. Point being, we’re automatically receiving second opinions. Em receives the same basic care she’d receive anywhere else in the country. Plus, Lombardi is one of the few full-service cancer centers in the U.S. – part of a national network. As for St. Jude’s, there’s no need to relocate just yet. Georgetown is affiliated with our HMO, Humana, which so far has paid for most everything.
Of course, we’ve lost some serious money from having Vonne work less. But for now, we’ve dodged every insurance controversy, even though we’re still fighting over thousands of dollars of bills from last July. If we take just a couple of financial hits, our fortunes could change dramatically, since this whole show will probably cost over $200K. And if Em’s health goes sour and we’re pushed to last ditch efforts, the money thing could take a turn for the bizarre. But so far, everything’s holding up and we’re very satisfied with Humana, Lombardi/Georgetown, and homecare provider Caremark.
Back to the real-time narrative: Last week Em’s numbers are huge going into Lombardi on Monday to start the round. I already told you about that day’s CT; enough said as to that farce. On Tuesday she gets her second dose of Actinomycin D and suffers a significant fever within a few hours. Vonne tends to her throughout and does a wonderful job keeping her cool, but I have to take her in again on Wednesday – in Bengal Tiger face courtesy of the painting kit from her Aunt Maggie – for blood draws to see if her catheter is infected (gratefully, no). It seems that Actinomycin often causes short- term fevers, and so the whole thing dies away by Wednesday afternoon.
Emily’s Friday (27 Jan) shots at home proceed smoothly, but soon after she stops eating and starts vomiting. We order more of the anti-nausea drug Zofran, continuing its round- the-clock flow via her catheter line to calm her system. That gets us through Sunday morning. Since it’s just snowed five inches, I pull Em around the neighborhood on a sled. She has a great time, but then deteriorates in the afternoon, and, despite begging for and trying a variety of bland foods, she can’t get anything down. By early evening she’s gagging and throwing up again, so we notify Georgetown’s doctor-on-call to obtain more Zofran for the following morning.
On Monday, I paint Emily’ face as a clown and the two of us head off to Lombardi for another draw, which goes okay. Her white cells are already recovering, but her platelets drop to 29K and the nurses forecast a transfusion after tomorrow’s home blood draw if she dips below 20K. Still, our lady oncologist, Dr. Novakovic, believes Em will be up enough by then to avoid transfusion. Biljana has a great feel for these things and more often than not is right about Em-Cat.
I wish our Lombardi day ended then and there, so I could return for a late 8-hour workday, but Em refuses to pee in her attached urine bag for over five hours! We do every children’s art project imaginable and endure the entire gamut of freaking-out-in-the-doctor’s-waiting-room emotional states. We give up at 3pm – if you can believe it. Em holds it in that long despite drinking a mother-load of juice. As our prize, we’re sent home with a jar. Naturally, as soon as she gets home and chills out, Emily walks off by herself and the bag’s immediately filled (it’s a special capture bag we adhere to her undercarriage, splicing the catch-bag out through her diaper).
Next problem is that our homecare system won’t pick up urine alone. If we have a blood draw as well, then fine. But piss alone doesn’t rank – apparently. Worse, the lab that does the urinalysis (American Medical Lab) won’t pick up either – more idiosyncratic procedures. So I end up driving like a madman through rush hour traffic to two different AML sites in northern Virginia, only to have both close shop right in my face as I dash up. In the end, we refrigerate the pee overnight and I re-deliver it early next morn to the closer lab. I lose a vacation day over four ounces of urine.
Sometimes piss happens.
Emily Update #3 (31 January-7 February 1995)
This round continues to be a problem – platelets-wise. Em started the round at about 300K, but it’s cut in half every 2-to-3 days since. She's been lethargic for several days now, often laying down on the floor and holding her head as if it hurts. Then the nosebleeds start again and the large, ugly purple bruises appear all over her body. What’s happening is, her platelets get so low that the badly thinned blood actually leaks through her smallest arteries (e.g., headaches, burst blood vessels in mouth, nose bleeds), so she hemorrhages like a hemophiliac.
Tonight (1 Feb) we receive word that Em's platelets are down to a mere 7K, based on a home blood draw earlier in the day. Dr. Novakovic makes the call herself around 8pm, ordering us to Georgetown ASAP for an emergency transfusion. At this near-rock bottom level, Emily runs a one-in-twenty risk of spontaneous bleeding in the skull – fatally damaging her brain. I call Vonne at work and she rushes home. I quickly dress Em and we three sing Disney movie songs all the way in.
We arrive at Georgetown University Hospital at 9:30 and endure a resident who doesn’t yet understand the workings of the new pediatric observation unit, where kids can receive outpatient treatment during non-Lombardi hours. You aren’t officially admitted to the hospital – so our streak stands! All the on-duty docs and nurses are amazed at our luck to date, but the existence of this unit suggests that we’re less an inexplicable rarity than a harbinger of things to come in the era of managed care.
Anyway, this resident makes us jump through all the exam hoops, unnecessarily scaring Em in the process. Then our newly minted doc wrings a detailed case history out of us, like our file doesn’t exist or we just decided to come in off the street on a whim. She is definitely taking advantage of her first Wilms’ Tumor patient. Of course, we end up fighting the battle of the automatic blood-pressure machine with her. To top it off, she fires a parting shot designed to take us down a notch, deploring the fact that Em’s still in diapers. The horror!
Clearly, we’ve just been screwing around as parents (well . . . there is that baby on the way). It’s a cheap and unprofessional comment by the resident, who seems only dimly aware of what Emily is going through in reality – as opposed to a case history. Em definitely has control over her bodily functions. She just chooses not to grow in that way right now, and we don’t push it since she goes through so much with strength and good cheer. She is amazing to watch, much as she drives us insane on some small things.
To wrap up the story: platelets at 11 and we’re out of there by midnight.
Friday’s trip (3 Feb) to Lombardi goes well, with Em’s blood numbers rebounded enough to avoid another transfusion. Around the same time, Vonne has another sonogram. The word is that Baby is head down but not yet engaged. And no, sex is not apparent. One busy day, but it’s all good news.
Our trip to Lombardi on Monday (6 Feb) once again costs me a vacation day, as Em holds her water until mid-afternoon, even though we flood her with a saline line from 10 o’clock on. God, that kid can be stubborn. On the other hand, she does a lot of nifty art and has much fun playing the giraffe – her face painting for the day. Her stick-people drawings elicit a nice complement from art therapist Tracy, who says Em has really good spatial understanding for a three-year-old. She pronounces Em “very advanced,” just as I’m on my knees begging the child to pee. Ah well, we each advance in different ways and yet, she has such a chaotic, dream-like approach to her drawings – part Rauschenberg, part Chagall – for someone with such bladder control. And they call me anal-retentive! Perhaps she works well under pressure.
Then, after losing my vacation day and with the urine is finally out (proving her surviving kidney is fine), we get the bad news: Em’s absolute neutrophil count (ANC) is disastrously low – from norm of about 3000 to only 75. Once again we jump into the breach of severe neutropenia, where her risk of death from infection skyrockets. Vonne has done a fantastic job of shepherding Em through past such periods and we pray we luck out again. As Vonne reminds, Em’s path on this round is exactly what she had last time – namely, platelet trouble and then low neutrophils. So we’re picking up some sense of rhythm here, getting a grip, and mapping the terrain.
Right now, our biggest short-term danger seems to be sleep-depravation, and we're looking at an infant in a few weeks! Suffice it to say that, given Vonne’s ever-increasing heartburn, Em’s nightly nightmares, and my growing tendency to jump out of bed and swing my pillow at imaginary beasts on the ceiling (ahem!), we could all use a packed REM transfusion. Unfortunately, many miles to go.
Emily Update #4 (7-13 February 1995)
Well, Emily gets through the week okay with no illness and we expect her numbers to be out of the danger zone after today’s (13 Feb) at-home blood draw by Kathie Clemens. Other than some dry chapped skin – from which we all suffer in this very cold weather, she’s fine. Nightmares bring her to our room only two times this week, which means things are settling down. She’s eating even better and resuming her normal schedule and activity levels. Em-Cat’s great joys now are scissors, stencils, using my shoe laces to tie up her toy horses, making horse sounds, and – if the snow returns – sledding with Dad. Oh, dressing and undressing herself is also big now (“Go away Dad!”). She’s also gaga over The Sword and The Stone Disney tape sent by Grandma Barnett. “It is a dark, dark age!” she ominously stage whispers every so often. It makes her laugh out loud – a far too rare event.
Meanwhile, we all hustle hard to get ready for Da Baby! I’m working the new playroom in the basement like crazy, while Vonne cleans, sorts, and preps clothes and accessories. Em is excited in an abstract way. She certainly likes the idea of babies, but she doesn’t get the whole concept yet. Our whole world revolves around her cancer, so we’re a bit nervous about her adjustment – not to mention our own.
Vonne is doing well with the pregnancy. We’re still looking at the end of March, but she feels this one will be early. We’ll be at Arlington Hospital again and we’re already re-practicing our Bradley Method exercises. We’ll stay at home as long as possible – just like last time – and then Dr. Tom will assume his bodyguard persona. It’s a role to which I’ve grown accustomed during recent months. It’s just that air of pretending-to-be-in- charge that gets me those “Oh Mister Manager!” questions every time I go into Kmart – like I even know the Blue Light special most times!
All joking aside, Vonne continues to do a spectacular job with this pregnancy, which is nothing less than heroic given her 20-plus hours at the store and her exhaustive care of Emily. Her record speaks for itself, but she deserves endless credit for quietly pulling off a double feat that few else could attempt with such skill, grace, and courage. I may play Rhett Butler to Emily’s horse-crazy Bonnie Blue, but Vonne is our own Melanie Hamilton made real – day-in and day-out. As Rhett might have put it, she is the only completely kind person I’ve ever known – a very great lady.
During our college days back in Madison, I used to watch Vonne waitressing at Paisan’s from the kitchen where I cooked – kind of a Frankie-and-Johnny thing. Admiring her from afar, I used to point her out to other cooks – before I had even met her! – and explain that that was one woman you’d marry in an instant, if given the chance. No one ever disagreed. They’d all just nod their heads solemnly and then look at me like I was nuts if I thought I’d be the man. It was just so obvious to me then, and nothing Vonne can do now will convince me any further of my great wisdom to finally get off my butt and ask her out on 21 June 1982 – over twelve years ago. The movie was Blade Runner. Can I pick ’em or what?
