Serial 7:11 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 #5 (13-21 February 1995)
A fairly uneventful week with one exception: Emily’s EKG today (17 Feb). We typically conduct one a week or two before every round of Adriamycin, which damages heart muscle tissue. The EKG assesses possible damage from the last round and gauges her capacity to withstand future doses. If it's bad news, it's a showstopper.
The diagnostic (basically an electrocardiogram plus ultrasound of her heart) focuses on measuring pumping throughput, which translates into a percentage figure known as the Left Ventricular Ejection Fraction (LVEF). Anything over 50 percent is considered normal, and any change from period to period – so long as all numbers sit above 50 percent – is considered a normal variation. Emily scored 59 percent last July (the baseline reading) and 54 percent after the first Adriamycin in December.
During the last EKG, Em got very scared. She usually goes ballistic if asked to disrobe and lie back on an examining table. She associates it with terrible experiences and we understand completely, having held her down through all of them. Holding your child down like that is probably the most exhausting experience I’ve had in this life. I felt peppier after the marathon. Last time I calmed her by repeating her mantra, “Hold still, then it won’t hurt so much” (not that the diagnostic causes any physical pain). Em often uses the coping technique of voicing the typical nurse/doctor bedside mannerisms when she herself is undergoing a procedure. Sometimes, though, you just need to feed her the right line to get her rolling.
We drive to a Georgetown satellite facility in Fairfax for the EKG, and I come prepared with all my tricks, including the ever-useful promise of Chicken Nuggets and French fries. Problem is, Em freaks out in the waiting room soon after arrival, and so the jig’s up even before it starts. She knows something unusual is going to happen (we tried to tell her beforehand) and screams she doesn’t want her coat taken off. Then she makes for the door. Of course, that’s when the referral snafu kicks in with the receptionist (the timing always fascinates me), but Em chills after I get her coat off and hold her for a while. Then she recognizes the tech who did her last time in the District and relaxes even more. He has a big hospital bed for her to lie in, so I can get in with her. She cries some anyway, but then summons her usual courage and we’re done in 20 minutes. The room is very warm and full of windows, in contrast to the crowded, shut-in motif of Georgetown’s pediatric cardiology unit, and I think that helps some. We play in the reception area while the cardiologist analyzes the readouts. The news is good: no drop in throughput, measured at 56 percent.
That’s a huge relief. We sweat every EKG, since a negative reading not only signals potentially significant and permanent heart damage, but also calls into question the eventual completion of the protocol. If her heart is hurting, then we may have to suspend the Adriamycin for God only knows how long. It’s one of those Russian roulette moments: she’s got a one-in-five chance of not making it through and this is a prime opportunity for fate to emerge – poof! – just like that.
Emily is now fully cleared to start the next Adriamycin round and she’s free and easy until then, as yesterday’s blood numbers are big enough to signal the end of the last round’s degradation of her immune system. Our next milestone will be an at-home blood draw on 5 March to check her baselines before the round starts. Lombardi requires Em’s neutrophil count to be above 1K. Normality now kicks in at the Barnett house, or as close as we come in this unrelentingly unpleasant process.
Em suffers through the week with a heavy Upper Respiratory Infection, otherwise known as a cold. Worse, Vonne and I are likewise succumbing by week’s end. Fortunately, it couldn’t have come at a better time. Her immune system has just recovered and she’s got some time before her next round. With six more to go, we’re really looking at about 60 days (the ten prior to each round) where we tread lightly and pray for no illness so as to avoid protocol suspensions. Once the chemo flows, we just ride that tiger until we fall off.
Of course, death by pneumenopathy (illness) remains her most likely course of failure. So any cold, no matter how small, is treated like a precursor to something worse – typically pneumonia. Em receives an antibiotic, called Bactrim, prophylactically six times a week. It’s the same stuff many kids get for chronic ear infections. Before cancer – truly the B.C. in our family’s lexicon – we would have given Em plenty of Pediacare decongestant and that would be that. Now, however, everything’s a negotiation with our Lombardi nurses. Their fear? Masking other symptoms. Even though her immune system recovers between rounds, the regular suppression of her defenses makes her more susceptible even when her numbers are up. Nothing is simple now.
As Dr. Gootenberg constantly reminds, “The past is no guide to the future with the chemo protocol.” You can’t rack up wins, month by month, and expect that’ll protect you from anything lying just around the corner. Your record is worth zero. So what if Em has survived several periods of near-zero drops in her immune system! That tells us nothing about the next collapse; the past only tells us about the past. Many of the kids who buy it with pneumenopathy do just fine until they no longer do – and that’s that.
Since parents are – by an overwhelming margin – chiefly responsible for avoiding that fate in its initial causality (contracting infection), the pressure we feel is unlike anything we’ve ever known. All parents feel responsible for keeping their kid safe. It’s just usually pursued within the relaxed environment of comfortable optimism about the future: Oh I did that as a kid too and yeah, I scraped myself up a few times, but I lived. Kids are tough. Don’t worry so much!
The chemo protocol is like a crystal ball; it allows you to see what your future doom will look like. As a political scientist, its effect reminds me of how nuclear weapons impacted great-power warfare. Historians ask whether the monarchs of Europe would ever have started World War I if they could have gazed into a crystal ball and seen what it would unleash. Nuclear weapons did just that for the major powers after World War II. Everyone knew that all-out war would be a disaster for all sides, and so great power warfare was quietly retired over the decades of what later became known as the Cold War.
My point is this: Vonne and I have been given this crystal ball that tells us what periods of great danger lie ahead for Emily. Being forewarned creates so explicit a responsibility that one feels the finger of guilt preemptively pointed – I’ll not go down in history as the parent who got his first-born killed! Toss that on top of the subconscious guilt any parent feels when a kid gets cancer, and it’s easy to feel like a complete loser every day of the struggle – like you deserve it.
I remember looking at Em’s skin while she took a bath last May. It was totally unblemished, not a scratch, perfect in every way. At the time, I thought of the many scars I’ve collected along the way, and wondered how long we might spare her. I thought about that image a lot last July, when each day in the hospital brought some actual or threatened new effort to carve up her little 29-pound body – deciding how much they could safely leave before subjecting it to radiation and chemo. I cringe every time I look at her body now – with its freak show scars. That’s how guilty I feel.
Speaking of radiation, our second-in-command oncologist Dr. Novakovic passes along some medical studies of long-term survivorship (LTS). The thing to remember with LTS studies is that you’re looking about 25 years into the past – like the Hubble telescope looking backward in time by searching out light that’s traveled for millions of years. The publishing period puts you back about 2 to 3 years, the study itself is 4 to 5 more, and the LTSers are 15 to 20 years past treatment. Add it up and it means the treatments you’re evaluating data from the mid-to-late 1960s, when, of course, the state of the art was a whole lot less sophisticated than today.
Point of story: Em gets about 1200 rads and lung tissue can handle about 2500 before serious trouble results. She also gets it in fractionated doses (like suffering numerous light sunburns versus one big nasty burn), which helps even more, but how much we’re not sure since that LTS data isn’t here yet. Emily is part of the next generation on that one. The dangers are as follows: diminished lung capacity, fibrous growth in the lungs, reduced lung and rib cage development (lungs aren’t fully developed until age 7), and curvature of the spine (scoliosis).
Some sense of the trade-offs, yes?
For now, Em shows no dramatic long-term effects in thoracic (chest-area) development. The trauma we see in the lung diagnostics is a normal short-term reaction to the radiation, and it should go away with time. But again, this tells us little about the radiation’s long- term effects on her lungs, heart and right ovary. It just makes us feel better right now, and the longer we don’t see anything, the better we feel. The fact that one ovary remains unradiated is crucial. In the future, Emily can draw exclusively upon the eggs from the shielded ovary to work around any potential damage caused by radiation. Nothing guaranteed, mind you, but nice to know because we’re in this to win every single battle possible. Cancer is an implacable foe seeking to inflict maximum damage. Thinking from a gaming perspective, our strategy focuses on minimizing our maximum losses – on every level.
People often ask how Em handles all the chemo shots. The answer is quite well, because of the permanent catheter, known as a Broviac, placed just to the left of her right breast nipple. All the drugs go in through its two IV lines, and all of the blood draws come out through those same two lines. It’s that simple and neat, despite the inherently ghastly nature of having this latex tube sticking out of a hole in her chest, which in turn constitutes an ongoing open wound close to two important organs – her heart and her lungs. In fact, once inside her body, the catheter’s internal line travels – just under her skin – up the right side of her neck, and there enters her jugular vein upstream from her heart. The end of the catheter lies just short of her heart.
The site of the catheter’s entry into her chest has by now largely "healed" over, or more accurately, the skin’s constricted around the catheter line. The Broviac has a special fabric cuff that anchors it just under the skin, making for a reasonably tight fit. This central line runs out from her chest about four inches to a splitter (like a cable splitter), where it separates into the two lines. Why two lines? Redundancy is good, plus the second one is for use in heavy-flow hospital situations. The lines, which Emily and we refer to as her tubes, have built-on clamps (like on IVs) and end in a hard plastic, tube- like cap, upon which is placed another tube-like structure capped by a special polymer seal, through which needles can be inserted on a repeated basis without damage. We replace these polymer caps (called lumen or injection sites) every week.
We give Em a shower every two days, before which we strip off the elaborate bandaging covering the entry site and after which we perform a sterilizing routine and re-bandaging of the site. As Vonne has grown great with child, I’ve assumed this duty on an exclusive basis.
Typically, on those nights Em and I head upstairs around 8pm. She gets undressed, and then I take off her protective vest (more on that later) and remove the bandage scheme. Then off to the shower, where I scrub her down with antibacterial soap. After we towel off, I put on her special bathrobe (always freshly laundered) and lay her on our bed. She watches a half-hour video as I go about my business. This set-up works well by distracting her and getting her to turn her head away from the site, diminishing the chance she’ll infect herself by breathing on it.
The Broviac maintenance process starts like this: first I scrub the site and tubes for any old gummy residue from the various tapes we use, wiping it all down with alcohol preps. Then I draw up two 3-cc syringes of Heparin Lock Solution (blood thinner), wipe off her polymer caps (replacing if necessary) and flush both tubes (one shot each). These syringes feature wide-bore plastic "needles" (known as cannula), which are specifically designed for the polymer seals. The whole scheme is known as the needle-less system.
Many hospitals are moving in this direction (the polymer seal, for example, is a cutting- edge advance) for obvious reasons – namely, it cuts down on accidental sticks by which medical personnel can become infected by such things as AIDS. By the way, many AIDS patients have catheters like Em’s for the same reasons: avoiding painful shots, reducing abuse of veins, bypassing the danger of toxic chemicals spilling through veins and causing chemical burns, etc. In Em’s case, the flush shot simply cleans out the tubes so they don’t clot up between uses. Em often pushes in the shots herself as part of a game we play. But usually she tries to zone out and lie still for the next part, when I clean the site itself.
After scrubbing down my hands, I pull out a pair of sterile gloves wrapped in paper from a sealed, sterile package. I open up the paper wrapping and lay the gloves aside for later access. Then I use the sterile package as my sterile field, upon which I break out a 2X2-inch gauze, a 2X2-inch IV gauze (slit to go around the line), and a glob of sterile, anti-bacterial ointment. These items sit in the sterile field while I also prep containers of Betadine swap sticks (red stuff nurses wipe on your arm before drawing blood) and alcohol swab sticks. Through all this, I touch nothing directly, and lay everything out so I can later access them without compromising sterility. Tricky, but it becomes second nature quickly. Concentration is key.
Before getting down to the real work, I put on my gloves all sterile-like (very doctorly and with great flourish). Then I use the Betadine sticks to clean the entry site three times in a row, employing a circular-wiping pattern moving outward from the site. I wait a minute while the special soap (Emily’s term) dries, and then I wipe it off with the three alcohol swabs, leaving Betadine immediately around the site. Next I take the Betadine gel and slop in on the entry site directly. Then I apply the IV gauze sponges, loop the tubing at the site (creating a safety margin of slack in case the tubes are ever pulled) and place the 2X2 gauze sponges over the loop. I place two wide pieces of cloth-like tape over the entire bandaged area. What sticks out of the bandaged area are the two tubes beyond the splitter, itself well anchored under the tape. The tube ends are flagged with medical tape (i.e., wrapped like a flag on a pole), thereby allowing them to be clamped to the inside of Em’s vest.
Emily’s "vest" is really a section of Spandage, a spongy, web-like bandaging fabric that’s placed around awkwardly positioned wounds (e.g., head, shoulder, hip) and under casts. It comes in a box in 10-yard strips. We simply cut a length of about 18 inches, cut holes for her arms, and then pull over her head like a funky tank top. Her tubes are clipped to the inside of the vest by a bulldog clamp, keeping them snug up against her body and out of harm’s way. The vest also protects the bandage site by providing an extra layer of bandaging. Em wears the vest at all times, except for showers and dressing changes. Happily, she’s never fought this.
There was a period in the fall when, after we’d put her to bed, she’d secretly – but carefully – rip off her bandages and pile them neatly on the end of her bed. We couldn’t tell if this was a protest or curiosity, but she always seemed profoundly sad after doing it. For some unknown reason, she stopped doing it after Christmas.
Point of this detailed explanation: Em feels no pain with injections. She had her last intravenous blood draw in the hospital in July. She’s received three subcutaneous shots of a blood growth factor so far (Vonne and I did one each – pretty strange to learn!). Thanks to the permanent catheter, Em avoids literally hundreds of painfully long and physically dangerous needle sticks over the course of chemotherapy. Knowing that, it’s hard to imagine life without the catheter, as horrible as that sounds and especially since it’s very existence poses a significant – but controllable – danger to her survival. It’s a Faustian bargain in the truest sense, but worth it.
For now, we’ve not encountered any serious problem with the catheter, technically described as a 7.0 French, double-lumen Broviac catheter. There are several safety measures built into the design, which is good, since it’s basically an access tube that runs right into her heart. The maintenance routine has never been a problem. So, as long as we remain hyper-vigilant about the procedures and follow the rather sensible restrictions on her behavior (no football, wrestling, kick boxing, etc.), we keep our deal with this devil. To our credit, Emily has never contracted a catheter infection, which is: 1) very dangerous – as in potentially fatal; 2) takes a long time to cure, to include hospitalization; 3) usually results in removal and replacement of the catheter, necessitating another surgery; and 4) invariably suspends the protocol big-time. Again, vigilance matters – 24 hours a day, 7 days a week, 365 days a year.
On non-shower days, either Vonne or I perform the tube-flushing routine. We can do either the flushing or bandaging routines in our sleep. We joke that we’ll have to resist always looking for the new baby’s Broviac once he or she is born. Once I actually found myself checking a friend of Em’s for one after he fell down on his chest – it’s that reflexive. It all seems so normal now, despite its bizarreness. Once, when Em fell off a swing at a local park, a lady helped me pick her up. For some reason, this woman felt obliged to pull up Em’s shirt to check for bruises. Before I could stop her she caught a good look and then – with dramatic gasp – grabbed her kids and left as though she’d stumbled into an episode of the X Files. I was tempted to screech after her, They’ll be coming for you next! You can run but you can’t hide!
We can’t wait until the catheter’s removed. I dream about it regularly.
Whew! That’s a lot of detail. I write it all down simply to document it. If Em survives, she’ll have many questions about this whole experience (How did I get these scars here?). Imagine conquering cancer and not remembering much about it!
This threat will hang over Emily's life like Damocles’ Sword. She’ll need much self-reflection to deal with this. Self-reflection requires knowledge, and knowledge requires information. These e-mails thus serve as an archive. My long-distance running partner had advised me from the start that this’d be a good thing to do. Our social worker said as much. But I could never bring myself to do it until recently. I feared getting too detached, like I was – literally and figuratively – writing her off. At first, I could only imagine the memoir as a way of remembering the dead.
Vonne is more literary than I, and eventually will write some beautiful things – probably poetry – about this down the road. But naturally, she’s too busy right now with her pregnancy, which remains a stunning achievement to date, given everything else. Vonne has been simply tireless, but likewise often deeply tired. Nonetheless, she remains my co-source of everything I get down on paper.
Emily, understand that your Mom wrote these updates as much as I.
Some tidbits: Emily is losing her hair again – routine to some but still visceral to us. It sets her so far apart from other kids. Many are scared on sight. Adults are visibly shaken when her hat falls off and they see her bald. Even with a hat, she has an eerie look about her that most people catch. You know, people always used to stop us in the mall and say, “What a beautiful child!” Her golden hair, beautiful visage, and sparkling personality always made people respond so positively. They still do most of the time, as all that still remains – save the hair.
But when the hat hits the ground, how things change! Some stare at her as though they just saw a dead person. It’s a chilling experience, to say the least, one we’ll never forget.
It has to affect Em some. She can’t help notice the change. Now, she reflexively puts her hat back on if it falls, where before she always tossed it dramatically in crowds, like she was Mary Tyler Moore. She even puts it on inside the house when she comes up to the door and she knows people – especially other kids – will look at her. When it’s just us, though, she’s completely unconscious about it.
We had thought only the Adriamycin kills Em’s hair. So we got used to it growing back marginally between those rounds. But this last Actinomycin-Vincristine round shaved her clean again. Each time it comes in, it looks browner. I myself lost my golden hair around age five. It’ll seem symbolic if she goes out as a blond and comes back a more somber brunette, although I’ve sworn off dire symbolism after we cut down our dying front-yard tree last August.
Picking up that ominous yarn: we later found out the tree had a fatal disease called fire blight. So one hot day my father-in-law Carl helped me chop it down. It was a symbolic surgery where I worked out a lot of rage on the trunk with an ax in a late afternoon thunderstorm. Still, I never wanted something so dead in all my life – except for Emily’s cancer. Seeing the trunk prostrate gave me the same dreadful satisfaction as seeing Em’s cancerous kidney cut open on the table in pathology. All I could think was, Fuck you!
Technology update: we got a pager. We’ve resisted until now, despite the advice of other parents and the peds onc nurses. But then we found we had too many tense times when I couldn’t be reached, or when we fretted over baby-sitters getting ahold of us in theaters, etc. Between Vonne’s pre-natal stuff and all of Emily’s things, our schedules remain beyond hectic. For $9 a month, to hell with worry!
Emily Update #6 (21-27 February 1995)
Having vented much angst and bile during last week’s update, this week’s is full of good things about good people. Happy, happy, joy, joy! Any week The Brady Bunch Movie debuts is definitely O-tay. Life is a cornucopia of – as Peter might say – “pork chops and applesauce.”
But alas, I teleparabolize here. Yes, the word is spelled correctly. I got it from my new Gen X dictionary (okay, so I’m 32 – sue me!). It means to interpret life through television shows popular in one’s youth. An example? Every time my pager starts vibrating on my belt, I have the strange desire to grasp it, twist in agony, and tilt my head back in the anguished scream of Star Trek’s Captain Kirk. I dunno, it just seems like it deserves an agonized reaction, as though the Providers are punishing me for challenging their authority on this planet. I can almost hear the soundtrack as we fade to commercial . . . Daaa . . . Da duh da duh Ta daaaa! Wha naaaaaaaah!).
That, my friends, is teleparabolizing.
Details: Em is starting week 31 of 65, with 34 to go. End date is still 27 October. Thirty-five shots down and 30 to go. All is moving forward to the 6-8 March date with Adriamycin. We’ll do an at-home blood draw on the Sunday prior to cut down on our time in Lombardi on Monday. We’ll also try to collect the urine at home to avoid any lost vacation days. Em-Cat will get the Tuesday and Wednesday doses at home with the aid of our new trusty IV pole.
Dammit Jim, I’m a doctor – not a coat rack. Get somebody else to hold this saline bag!
Oops, I did it again.
So many people to thank for so many things. Of course, we thank all who pray for Emily. That counts a lot with us. All in all, we’ve been blessed with enormous support. When we thank people for care packages and phone calls, we’re just scratching the surface of an impressive network. The outpouring humbles us.
This support also helps us to remember where we reside in Cancerworld. We’ve met plenty with worse insurance, less supportive families, nastier cancers. Although Vonne has worked with the elderly, this is my first experience dealing with people close to or clearly on their way to death. It’s hard to tell who hurts more when children are involved – the fragile kids or their even more fragile parents.
I’ll admit to conspiring with Vonne to get as much done at home in advance of mandatory visits to the clinic. Time in Lombardi is no fun, despite the great staff, art therapists, social workers, etc. It’s a sad place to meet kids who should – by anyone’s standards – have a different and better life.
Some peds onc patients are seriously deformed by their cancers, even though you can still see sweet little kids underneath all the damage. They all talk of Disney World. Some go as their crowning achievement, others for one last fling. You wonder who won’t be around this time next year, and whether any parent might be thinking the same of your kid. This is why we get Em all pumped up before she goes in, paint her face as some exotic animal, dress her to the nines, and then blow in and out as though making a personal appearance instead of submitting to chemotherapy. For now it’s worked, but it’s amazing how our insomnia returns just before the round, and how Em’s nightmares keep pace.
It’s strange but illuminating to spend time with other parents at Lombardi. I’m sure most are quite normal in normal times, but we’re a rather nervous and obsessive lot, especially at the clinic, where the tension is so thick you can cut it with a knife. Still, many keep it under wraps pretty well. Ah well, we all try to be on our best behavior there. Gotta be strong for the kids.
Vonne and I have spent enough time there to know we’re not the types who’d benefit from support groups. It’s mean to say this: but we can’t take on all their stories if that’s the price to share ours. It feels close to a full-time job dealing with Em’s cancer, keeping our marriage strong, plus bringing this new life into the world. As we’re often reminded, three out of four marriages dissolve in this crucible. At first, you blink at those numbers like a mirage, but then anecdotal evidence piles up around you – all the broken marriages in Cancerworld. We’ve just decided this is a time to be selfish. Maybe we’ll find such groups useful later on, but not now.
The fact is Emily’s cancer is rare. There’s approximately 400 cases in the US each year, with hers being the first at Georgetown in a while. Her advanced-stage diagnosis puts her in even more rarefied territory – forty or so cases a year. Toss in the details of her diagnosis (lung metastases spotted only by CAT Scan), and now we’re down to about 5 cases a year. If Em were leukemic, like the majority of Lombardi kids, then support groups might make more sense to us. As it is, we hoe a different row. This isn’t a bad thing per se, since a certain amount of notoriety can be a useful tool with large medical bureaucracies. Still, beware of gawky residents!
Now that Em is relatively famous among the Lombardi crowd for her painted faces, there’ve been suggestions that, “You guys could get a nice magazine article out of this!” It’s a strange thought, one we reflexively reject. We understand that individual parents deal with this experience in different ways, as do kids old enough to understand cancer in some mature way. But Em is too young for all that. It takes all the courage she can muster to get through everything she must. Her attempts to please us in this manner often flash-flood our eyes with tears – an involuntary experience of such intensity that it shocks me every time it happens. We have a potty video where the psychiatrist says that the child’s desire to emulate is the parents’ greatest asset at this age. Em-Cat may not be potty-trained yet, but she’s got nothing left to prove regarding her commitment to our general cause.
It is precisely Emily’s commitment that we need to respect. Last fall we let a documentary crew film her some one day at Lombardi (despite Nona Vonne’s attempts to shoo the camera away), but that was just an accident of timing, plus it involved helping the great cause of the art therapy program. The clinic’s bulletin boards are filled with local media stories on this or that kid "struggling on" and using some artistic outlet as a coping mechanism.
We’ve never known how to interpret such coverage, but our instincts are that Emily and no one else ultimately own this cancer. It’s our job to protect her spirit as well as her body, and thus we need protect her ownership of this experience. For now, it’s her battle and hers alone, despite all we do as parents. Like all profound life experiences, it’ll eventually be hers to do with as she pleases or needs. We can provide the tools for her examination and processing of this experience down the road, but this story can’t be appropriated from her – no matter how good the cause.
More practically, if I started thinking that way, all the honesty in these updates would go right out the window. No matter what happens, I play this absolutely straight. These updates are neither writing her up nor writing her off. We just want to be unalone – right now with family and friends, and down the road with the adult we hope will be Emily Vonne Barnett. We need that future woman here with us – right now. Someone to whom we can explain our decisions. Someone who’ll understand the difficult choices we make now. Someone who’ll forgive us for being so hard on her so many times, pinning her down during painful procedures, whispering cruel words in her ear when promises don’t work anymore and threats ring hollow. Someone who can grant us absolution – retroactively. Someone who’ll love us anyway.
Last July we went into Georgetown with a disaster but came out with a lifestyle. Yet, as much as Vonne and I are caught up in this affair, the experience is really Emily’s – first and foremost. We’re able to process so much of this experience with our adult minds, but in our efforts to keep everything so peaceful and safe around Em-Cat, it’s likely she’s processed far less of it. We’ve decided not to make the cancer a big, real-time learning experience for her. She’s got plenty of other things to master in her life. Plus, we decided early on that her overall good health and high spirits not only fell primarily under our purview, but also represented her greatest assets in the battle that lay ahead. Thus her processing of this experience must wait, as we do our best in the meantime to keep the protocol free of distractions.
Someday Emily will reach a point in her life where she can deal with her cancer comprehensively. When will that be? We have absolutely no idea. Maybe next year. Maybe long after we're gone. Whenever she asks for it, she’ll be given as much as she can handle under the principle, Either tell her the truth or let her invent far worse explanations.
Despite my babbling, don’t be confused into thinking for a minute that we know what we’re doing here, or how this all comes together in some big picture. We were just offered a scratch for one of many itches, and right now – right away – we reject it. Does that change with time? What the hell hasn’t in this horrible process? How may it change? Again, no idea. We’ll say yes to one thing and no to another just based our appreciation of the here and now. We don’t live in a world of tomorrows, only todays. This is the selfish time. We’re on the take – not on the give.
All this blabbing just because one lady mentioned a magazine article. Thank God she didn’t say a movie deal, or this update would never end!
Is Emily developing okay despite the cancer and all the treatment? All signs are yes for now. It’s true that she spends more time alone than the average three-year-old does, and that she’s behind on several things, such as potty training. But Mom and Dad are the types who feel great guilt if Em’s day is not one long pre-school-like session of skills training and enrichment experiences. In general, she gets just enough exposure to the usual things for her age. She spends plenty of time outdoors, albeit in a secluded manner. According to early childhood professionals who interact with Em on a regular basis, she’s normal for her age and reasonably advanced in enough areas (especially verbal and memory) to be considered bright. They tell us not to worry. Em is a nice kid who’s relaxed when meeting new people, and those people instinctively like her – including kids. Whatever Em misses out on now she’ll make up later with ease, or so we tell ourselves.
It’s during these off-periods that Emily seems so normal, so much like before. Yet even here our lives are crowded by medical events. This quick week sees both the EKG and an appointment with her regular pediatrician. By the way, Dr. Javedan says Emily looks great. She’s in the 75th percentile in height and 50th in weight – nice, normal numbers.
Life does go on.
