7/28/2019 Stella Joy, Part 1: The Diagnosis

1/4

The little girl with the fiery personality is living on stolen time as an inoperable tumour growsin her brain. Today the Star begins a compelling and in many ways uplifting journey with Stella,her family and friends, as they approach the end of her life in a most unconventional way

ON

ON0

SATURDAY, DECEMBER 8, 2012 SECTION IN

INSIGHTStella Joy, Part I

The diagnosis

7/28/2019 Stella Joy, Part 1: The Diagnosis

2/4

7/28/2019 Stella Joy, Part 1: The Diagnosis

3/4

ON ON0 SATURDAY, DECEMBER 8, 2012 TORONTO STARIN3

>>INSIGHT

That trial usually causes terriblenausea and other side effects.Aimee and Mishi wanted quality over

quantity of life.They would get no medical hon-

eymoon with Stella. But they would

make sure her last days were full ofeverything a honeymoon promises love, happiness, delight.

Dr. Bartels told them that withoutradiation, they could expect Stella tolive three months.

FOR A CHILD, three months is a life-time.

Stella spent that summer radiantly.Both her mothers took leaves fromtheir work. They delighted in her fa-vourite places the library, the park,

the zoo, Riverdale Farm, where sheloved to berate the copper-colouredpigs for not peeing in the potty.

They celebrated her birthday at leastonce a week. They swam at cottagesand met Cookie Monster in SesamePlace, Penn. Before the flight down,Stella got to sit in the copilots chairuntil it was time to buckle up. Thenshe had to be wrestled up the aisle,screaming: No! This is my plane! Thatman is not sharing!

She had ice cream for breakfast and

didnt have to brush her teeth. She wassupposed to move from her crib intoher own big-girl bed, but instead, shegot to sleep between her mothers.They bought a new, king-sized bed, soStella and Aimees swelling pregnantbelly would both fit comfortably.

If she noticed the growing tremor inher hand or the increasing difficultyshe had walking, she didnt let it stopher. Her headaches were kept undercontrol by Advil and Tylenol.

She thinks she won the life lottery,Aimee said in August. Shes neverbeen happier in her life.

For a parent, three months is a nap.Aimee and Mishi woke up, and it was

over.Now they are waiting for the worst to

happen.Stella can no longer walk. She can no

longer stand up on her own. Last night,

she told Aimee she couldnt lie down byherself.Stella is rapidly receding down the

developmental milestones chart.Her headaches have worsened, too.

She often clutches the hair at the backof her head. She now takes regulardoses of morphine and anti-nauseamedication to combat the effects ofswelling in her brain.

The drugs, the tumour and the hydro-cephalus pressure from cerebrospi-nal fluid that cant drain past the tu-mour have individually or in combi-nation made her fade. Most of the timenow, she is dazed eyes half-mast andunfocused. She returns to her old fieryself for only a few hours every day.

Even then, all she wants to do is sit onher comfy living room couch,wrapped in Mishis arms.

Her parents are terrified. Its one

thing to decide to accept death in theo-ry. Its another to watch your child die.To fight a disease with a 100-per-cent

mortality rate might be futile, but itseems less painful than facing deathstraight-on.

Hope is a powerful opiate.Most parents of children with DIPG

hope, till the very end, that theirs mightbe the first kid who beats this terribledisease.

Mishi and Aimee have a different kindof hope. They hope Stella has a gooddeath.

If you are going to pray for some-thing, Mishi often tells strangers whosay they are praying for a miracle, prayshes peaceful and happy and comfort-able till the end.

But that doesnt mean they are atpeace.

Each morning, they wake up fearful.

Will she lose the rest of her speechtoday? Or will she have a violent sei-zure and die instantly?

Often, children with DIPG dive off aplateau, going from stable to dead intwo weeks.What they fear most is that she will

suffer. They fear the moment she goesblind and is alone in the dark.

Even when shes alive, she wont beherself, says Aimee, whom Stella callsMommy. Thats what Im dreadingthe most.

They fear the box of medications andneedles theyve left unopened in Stel-las bedroom.

Their fear their life without her,when they are no longer Stellasparents.

Stella gives

kisses to herpuppet Carrot,

a bee that her

Aunt Andgie

brings to life

with a British

accent. Stella

and her moms

have a wide

circle of

support that

includes friends

and family

members.

Continued from previous page

Continued on next page

7/28/2019 Stella Joy, Part 1: The Diagnosis

4/4

IN4TORONTO STAR SATURDAY,DECEMBER 8,2012 ONON0 ONON0 SATURDAY, DECEMBER 8,2012 TORONTO STARIN5

>>INSIGHT

Wearegrievingsomethingthathasntevenhappened yet,Aimee says.Whensheisalert,theyplayquietgamesonthecouchMr.PotatoHeadgoesshopping,andnail salon.Theyreadherfavouritebook, Stella,Queenofthe

Snow,abouta littlered-hairedgirlandherbrother,Sam.(Shethinksitwaswrittenabout her,especially sinceMommyis havinga boysoon.)Theytrytheirbestto bebrave,evenduringcon-versationslikethisone:Stella,doyouknowyouaregoing todie?Mishiasksthemorningthelife-cyclecelebrantisduetocometofinishplanning Stellasfuneral.Stellanodsherhead.Doesthatmakeyouhappyorsad?Stellaanswers:Happ y.Why?Because...youre...sad...now.Youregoingtomissusbut youregoingtocomevisit,right?saysMishiinasing-songvoice.Going. .. come. .. visit.. .Mama,Stellaresponds.Thatsgood.Mamaisgoingto missyoutoobecauseI loveyou,Mishisays.Then,sheleansdownandkissesStellaonthecheek.

AIMEEAND MISHIsometimesjoke

blacklythattheyweredesignedforthistragedy.Aimee,34, isthedirectorof operationsatCampOochigeas,a summercampforkidswithcancer,andhaslong knownDr.BartelsandDr. Rapoport.Hermother,MarilynEmery,isthepresidentand chiefexecutiveofficer ofWomensCollegeHospital.Theyvebothseencancerupclose.Theyknow ithits indiscriminately.Theynever assumedtheir familywouldbeexempt.AimeesbestfriendfromchildhoodsummersisAndreaWarnick.Sheis agriefcounsellorforkids.Shehasa mas-tersdegreeinthanatology thestudyofdeathanddying.Warnickispassionateaboutdeaththewaymanypeoplearepassionateabouthockey.Long beforeStellasdiagnosis,AimeeandMishihadbeenregularlytreatedto Warnicksstumpspeech onhowdeath-phobicweareasa society,howwedonthonourourdeadastheydoin Africaor CentralAmerica,howourcultureseesitas afailureversusa

naturalpartof life.. .WhenStellawasdiagnosedwithDIPG,herparentsknewmoreaboutchildhoodcancerand deaththanmostofus.Theyhurdledthedenialstageofgrief.Mishi,32, workedasan administrativeassistantfor thepsychiatric departmentatSt.MichaelsHospital.Now,sheusesmanyofthedrugshercolleaguestalkabout antidepressants,anti-anxietypills,sleep medications.

STELLALIVESIN alittlebrownbrickbungalowinEastYork.Thereisa flow-eringcrabappletreeonthesmallpatchofgrassoutfront,anda playhousehergrandfatherNoel Methven,whomshecallsPoppa,builtforheroutback.Poppalives withMishisolder sisterHeatherMethvenin abungalowdirect-lyacross thestreet.Mishismother,MargaretMohr,whom Stellacalls Dee-Dee,livesinthehousedirectlybehindhers,along withMishis teenagebroth-er,Tristan.Thetwohousessharea backyard.

Beforeherdi agnosis,Poppa wouldpickherupmostdaysfromdaycareandbringherhometoherfavouritecouch,whereshedsitwithherAuntieHeatherdrawingorwatchinganepisodeofTheGoldenGirls.Then,on Saturdays,shedwakeupDeeDeeandUncleTristanforbreakfastandhavedinnerwithherothergrandparents.IfMishihadplannedan adventure,hercousinGra-cie,ayearolderthanher,wouldalwayscomewithhermothers,AuntieAndgie(AndreaBruner, Aimeessister)andAuntieJula(JuliaGonsalves).BeforeDIPGwasa recognizableacro-nymtoanyoneinherfamily,Stellawasbeingraisedin avillage.Sincethen,thevillagehasgrownevenlarger.Morningsstartlikethisone,theTues-dayafterabrilliantlyhotThanksgiving,whenherPoppaarrivesat7 a.m.withaboxofchocolateTimbitsanda bagofbagelsfromTimHortons.Hewaitsonthecouchforhisgirlstowakeup.Thenhemakesthemtoastandtea.SinceStellasdiagnosis, itsbecomehis ritualofcomfort.

Thismorning,hewaits45minutesbeforeStellaappearsonMishiship,wearingyellowflannelpyjamasanddemandingtelevision.Sheisfollowedby AuntieHeather,noweightmonthspregnant,whohascometocheckonmygirl.Fivemin-uteslater, Aimeesmother,Emery whomStellacallsTutu arriveswithaBluetoothpluggedintoherearand abagoftoiletpaper.Shehastakentime

offworkandplanstocleanthehousetoday.Then,AuntieAndgiestepsintotheroominherpyjamas.ShesleptoverlastnighttohandleStellas4a.m. mor-phinedose,so herpregnantsisterAi-meecould sleep.Next,Warnickandherpartner,EmilyHopkins,appearinthelivingroomwiththeir1-year-olddaughter, Tobin.Thebasementapartment wasrenovatedto

accommodatethem,andtheymovedinacoupleofweeksago.HopkinsisapediatriconcologynurseandisheretohelpwithStellasmedicationsastheygetmorecomplicated.WarnickisheretoeaseMishiandAimeesanxietyaroundStellas death.Oneof Warnicksregulartalking pointsishowisolatingdeathis inNorthAmer-ica.Weveoutsourceditto funeralhomes,so wearentcomfortablearounditanymore.Ratherthanrisksayingsomethingawkward,weswitchaislesinasupermarkettoavoidagrievingmother.Thatsnotthe caseinStellashouse.Here,griefisa dishgenerouslyshared,likelove.BythetimeAimeeemerges,eightpeoplearesettledaroundStella,sippingteaandeatingtoast.Ifwewonthelottery,obscenely,thisiswhatweddo,saysAimee.Fortunately,moneyhasnotbeenanissue.MishistartedablogaboutStellaand thefamilys darkjourney. Betweenreaderssendingthemmoneyand three

fundraisersfriends andn eighbourshavehosted,theyvesofarraised$26,000sothattheycan affordtostayhome.Other unexpectedgifts fromstrangerskeep arriving:offers offreefamilyphotoshoots,ticketstoCanadasWonderland,hand-knitblanketsandframedportraits oftheir daughter.Theyarenotaloneintheirgrief.ButStellasdiagnosishasstrippedthemofthebanalitiesofplaydatesand errands

thatgauzemostparentsdays.Theirfearhasreducedthemto theirnakedselves.Andtheyareverydifferentpeople.Theymetata grouphometheybothworkedat Mishiasanadministrator,Aimeeasasocialworker.TheytumbledintoloveandweremarriedsixyearsagoinTutusbackyard.Theybothworelongwhitewedding gowns.

Athercore,Mishiisa cerebralintro-vert.Shesalwayssufferedfromthatfeelingofnot quitefittingin.Shesneverbeengoodatsmalltalk.Butnow,shefindsevenquestionslikeHowareyou?unbearable.Shecallsherselfacontrolfreak.SheneedstoknoweverythingaboutDIPG,andspendshoursreadingaboutitontheInternet.Sheisfrustratedbytheuncertaintyof Stellasdecline.Aimee,by contrast,isa campcounsel-lor.Shelovespeopleandchaos.Shedoesntanalyze.Shesinksintothepre-sentandcanignoretomorrow.Sincethediagnosis,shehasntdoneasingleInternetsearch onDIPG.Thosedifferencescrystallize aroundthebirthoftheirsecondchild,a boywhomStellahas namedSam.Heisduein11days.WhileMishigavebirthtoStella,AimeeiscarryingSam.Bothchildrenweremadewithspermfromthesame donor.TheuncertaintyofhisarrivalpushesMishisanxietytoanewlevel.WillStellabedeadbythe timehearrives?Whatif

theymissoneanotherby asingleday?Mishicantcopewithtwounpredict-ables.ShewantsAimeetobe inducedaweekearly.Aimeefeelstheirchildrenalreadyhavearelationship.Stellatalksto SamandtoucheshimthroughAimeesskin.Shewantstogointolabournaturally,andhalfofmedicallyinducedlaboursendinCaesariansections. Sheworries thatafteraC-section,shewontbeableto

holdStella orSam.

Thecouplecompromises.Samwillbeinducedthreedaysearly.Theirony:whilethefamilyhaschosena naturaldeath,theywillhaveaverymedicalizedbirth.ThisTuesdaymorning,theyhaveanappointmentwith theirmidwife. Stellacomeswiththemat thelastminute,herbarefeethangingdownfromMishisfrontcarrier.Formostof theappointment,Stellazonesout,hermouthhangingopen,hereyeshalf-closedbehinda pairofpurplesunglasses.But whenmidwife ChristieKavaratzisruns herhands overAimeesswollenbelly tocheck Samsposition,Stellasnapsto attention.Naaahhh...Top...Please...dan...hurt. .. Mommy,shesays.I. .. dont.. .like.. .her.. .pushing.. .Sam.Samlooksfine.Sothediscussion,asitalwaysdoes, refocuseson Stella.ImsonervousI wontbeabletobethereforthebirth,Mishisays.Onadaylikeyesterday,I wouldntbeabletodoanything.

Wellget youthere,Aimee reassuresher.Kavaratzishasbecomepartof Stellas

village.Sheregularlydropsbyim-promptu.Sheworriesaboutthemdaily.Threeyearsago,at fivemonthspreg-nant,shesuffereda gruesomemiscar-riage.Thetragedy,shesays,rockedhermarriage.SheisawestruckbyAimeeandMishisstrengthandtheirloveforoneanother.Asa midwife,Kavaratzisnormallyadvocatesas littlemedical interventionaspossible.Butthisis notanormalbirth.ShesupportsAimeeandMishisdeci-siontoinduceearly,butwarnsthemthatnaturesometimescantbetricked.Yourbodymightnotletyou gothroughwithlabourinthisverystress-fulsituation,shesays.Partoflabourislettinggo, releasingand relaxing.Stellarousesagainforthefamilysexit.ShecradleshershakyarmsaroundherselfandsmacksherlipstogetherforKavaratzis.Thats hernewesttrade-markmove:a huganda kiss.Thatthe

oldStellawouldneverhavekissedorhuggedanyonemakesitallthe moreheartbreaking.Afterthefamilyhasgone,Kavaratziswalksbackintoheroffice,sitsdownsandworriessomemore.Ihopetheyareokay,shesays.Ihopetheysurvivethis.

SAMARRIVESninemorningslaterduringahugefallthunderstormthat

smasheselectricalwires and trees

aroundtown includinga largebranchofStellas crabappletree.Whenhisheartrateplummetsforthreelongminutes,Samis goingtobedug outbyscalpel.In theend,heemergestheold-fashionedway,andis greetedbytwocryingmothersandaroomburstingwithrelatives.Mishiisthereformostofthelabour,butsuffersa panicattackafterhisbirthandrusheshomein tears.Incredibly,Aunt Heatherscontractionsstartedthesamenightandshesstillinlabouron thesamehospitalfloor,justtwodoorsdown.StellastayedathomewithAuntieJula.Thenextmorning,Juliacallstoan-nouncethatsheis walkingwithStellatothehospital.Theroomgoesquiet.It feelslikeachurch,waitingforthebride.Ineverreallythoughttheywouldmeet,saysAimee.Whenshearrives,Stelladoesntlooksick.Herfaceisbright.Herhairislumi-nous.Herblueeyessparkle.Shesmiles

widely.Shewantstoholdherbabybrother.Herhandsshakeandshereachesdowntohughim.Youresuchagoodbig sister,Aimeesays.I havetwobabies,right?Laterthatafternoon,Mishiis backatthehospitalforHeathersbirth.Shehuddlesinthe hallbya windowwithhermother,brotherand Tutu.Theyruntheirhandsoverherback,shouldersand hair.IhadconvincedmyselfIwas reallyokaywiththis,Mishisobs.Imnotokay.WhenI camehomefromthehos-pital,shesmiledat meandI justwantedtodie.HowwillI watchonechilddeclineintodeathandtrytoloveanotherchild?Samsbirthhasshotherbackto themomentof Stellasdiagnosis. Griefgripsherbody.Shedescribesitlikethis:astabbinginherchest; freezing-coldextremities;weakarmsandlegs;amuscular,mucousballinherthroat.Ifeellikescreaminginthe night,Dontyouknowhowspecialsheis?How

canyoutakeherawayfromme?shesays.I wanttowalkoffa bridge.ThatshowIfeltin thefirsttwoweeks.ImshockedthatImbackhere.

AMONTH PASSESsinceSams birth.ItsNovember.Thecrabapple treeis naked,awaitingwinter.Despiteallpredictions,Stellaisstillhere.Thefamilyhadanotherscarelastweek.

Stellasmorphinedosewasuppedagain

tocombatherheadaches.Shesleptalmoststraightthroughthenextfourdays.Hercolourwentgrey.Thefamilywentintovigilmode.StellasNannySandycancelledatripto LasVegas.Then,ondayfive,Stellaslightflickedbackon.Shewokeup,smiled,cametothedinnertableandatebarbecuedsteak.Twodayslater,shesbackonthecouch,eithersleepingorlikethis:eyeswidebutrolling.Sheopensandcloseshermouthsilently,likea fish.Shecanstillspeak,butbarely.Herwordsarriveina whisper,10painfulsecondsapart.Justthispastsummer,Stellawas stringingnew wordstogetherinlongerandlongersentences.Now,thetumouris snatchingthemfromherbystranglingthenervethatcontrolshervocalcords.Sheiswearingapairof new,pinkDorapyjamasto fitherlengtheningframe.Stellamightbedying,but sheisstillgrowing.Mishiisexhausted.Shepacedherself

forthree dreadfulmonths.Stellahas livedfivemonthsnow,andtheworstis stillcoming.Youneverwishyourchilddead,Mishisays.Butyouwishit isover.Youcantmove forwardsor backwards.Mishiisstuckindeathswaitingroom.Herfaceiswetwithtearsasshede-scribesthepastweektoDr.KevinBe-zanson,Stellas palliativecare doctor.Itsoundsliketherearestillmomentsofgoodness,althoughtheyarefewerandfurtherapart,Bezansonsaysfromtheloveseat acrossfromStellascouch.Hecycleshereeveryweekandcarrieshisstethoscopeandlaptopin apannieradornedwithan Iama pinkocyclistbutton.Hestartseveryvisitby playingwithStella.Youreallyhavetoholdon tothosemoments.Regulardoctorsspeakthelanguageofcures.Bezansontalksaboutqualityoflife.Hisaimis tohelpStellaandherfamilyenjoytheirlastdaystogether.Thatsometimesmeansmorphine.Butit also

meansregular dosesof philosophy.Stelladoesntseemtobein painwhensheisasleep.Shescomfortableinhermothersarms.Andwhensheisalert,sheishappy.Shestillhaslife.Herfamilynowhastolearntoliveitwithher,inspurts.Theyalsohavetolearnhowtolivewithdeath,not waitforit.Insteadof focusingonthe languageStellahaslost,shecan workwithwhat

shestillhasyesand no.

Youdbeamazedathowmuchin-formationyoucangetoutof yesandno,saysBezanson,40.AsI saidtoyouintheverybeginning,I cantpromisethisisntgoingtobehard.IfStellas conditionchanges overmonths,Bezansonsays,shehasmonthsto live.If shedeterioratesbytheweek,shehas weeksleft.If shechangesby theday,herdeathisimminent.Thatsdeathsgeneralroadmap.ButStellasconditionisrare,andherfami-lysdecision againstradiation evenmoreso.Then,thereis herfieryper-sonality.Shewasunmappableinhealth,perhapsshewillbeunmappa-bleindeath.WillshebehereforChristmas,Mishidemands.Idont know,Bezansonsays.Idontknoweither,Mishisays.

FROMTHE OUTSIDE,Stellasbunga-lowlookslikeahappy,wrappedChrist-maspackageonthischillyDecember

night.Throughthefogged-uplead-panedwindows, theChristmas treelightsglowanddance.Youcanseeshadowsoffamilyandfriends,allbus-tlingaround.Inside,the atmosphereis burstingwithjoy.BradNeedham,afriendofthefamilyfromKitchener,isplayinghisguitarinthecornerwhilehisroastcooksin theovenoverrootvegetables,infusingtheroomwiththesmellofrosemaryandredwine.Hestompshispinkcrocintimeto thebeatofStellasnewestfavouritesonganadaptationofOh!Susannathatgoes:Gracie,SamandStella,dontyoucryforme/IcomefromAlabamawithaguitaronmy knee.Gracieis Stellascousinand bestfriend.Sheis 3 ayearolderthanStella.Buttoday,givenStellascondi-tion,sheseems10yearsolder.Shepogosinthemiddleofthe floor.Sam,now2months,bouncesonMis-hislaponthecouch.Ourlittlegirldancesin Aimeeslapinherownwayshakingherheadfrom

sidetosideintimewiththe beat.Sheiswearingadresscoveredinredpoppies.Hersymptomsaremoreorlessthesame,butthehouseisdiffer-ent.HermothersMishiin particularhavechanged.Mishihasbeenoutshoppingin theDistilleryDistrict withSam, leavingStellaat home.Twodaysago,the fami-lywenttobuyits first-everliveChrist-mastree,abalsamfir,whichStella

touchedandsmelledwiththem.

Tonight,theyre hostingan ornament-hanging party.Timeisanamazingthing itgallopsalongpredictablyanddoesunpredict-ablethings.In thiscase,ithasslowlybondedMishito SamandinuredhertoStellasdeath,onecoldstepata time.Ivecometoa placeofacceptance,shesays.Icantstopliving,spending24hoursonthecouch,becauseIlosewhoIam.OnedayStellawillbegone andIllbestillhere.IfeelmorelikemyselfwhenImoutdoingstuff.IthoughtIdbeincapable ofcelebrating Christmashere.Imsurprised.Imstillfindingjoyinit.Insteadofseeingeachdayas thepos-sibledayofStellasdeath,shehasstart-edtoseeeachone asa possibledayofStellaslife.Herlatestmantrais,Notrightnow.Asa clearsignofthetransformation,WarnickandHopkinshavemovedbacktotheirownapartment.Theirhelpmightstillbeneeded,butnot rightnow.Stellalookslikeanantiquedoll,her

eyeswideandunblinking,herskinpale.Aimeecarriesherovertothediningroomtable,whichiscoveredwithorna-ments.Thereisa starwithherchubbybabyphotoinitfromherfirstChrist-mas,anda newornament,featuringfourstockings overa fireplace.Whichonedoyouwanttoput up?

Aimeeasksher,pickingupa littlece-ramicStarbucks coffeecup. Mommyscoffee?Stellaholdsit withashakyhandandbringsittohermouth,pretendingtodrink.WhileAimeehangstheornament,Gracieclambersuponthearmsof thecouchandquicklyhangsanother.Lookingat themtogether,youthink:lifeissorandom,lifeisso unfair,embracelifesgiftsnowbecauseitmightbreakyoutomorrow.ThethirdsongNeedhamsingsisWa-

vinFlagbyKnaan.WhileGraciebouncesinthemiddleoftheroom,StellawavesherrighthandoverherheadfromsidetosidefromAimeeslap.

Herfingersareso stiff,theyseemtobendbackward, double-jointed.Everyoneelsefollows suit,wavingtheirhandsintheair,exhilaratedtoseeStellaengaged.TheyarehereforStella.Theyarehereforeachother.Thetwohavebecomeintertwined.

Stellas familyis learning howto live with death,not wait for it

ABOVE Stella

meets her babybrother atToronto East

General

Hospital. She

has named him

Sam.

LEFT The familystarted a new

holiday tradition,

hosting a

tree-trimming

party. While Aimee

and Mishi used todo this on their

own, they are

changing things up

for Stella.

LEFT Stellasgrandfather Noel

Methven, known as

"Poppa," arrives

early each morning

to make his girls

tea and toast. Itsbecome his ritual

of comfort.

Continuedfrom previouspage

Columnist

Catherine Porter

kept a journalists

diary as she joinedStella and her

parents throughout

their journey. In a

new ebook, Porters

diary presents a

completely

different way ofapproaching the

Stella story thanwhat is appearing

in these pages.

Stella is a

compelling read

and is available atstardispatches.com

STELLA,THE EBOOK

Stella Joy, Part I The diagnosis

Catherine Porter can be reached at

cporter@thestar.ca