stella joy, part ii: every precious moment
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7/28/2019 Stella Joy, Part II: Every Precious Moment
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SUNDAY, DECEMBER 9, 2012 SECTION IN
Her parents no longer see their daughter as a dying 2-year-old, but as a child who is navigating
death. Her light has dimmed, but is still on. They are following her lead, living each day in themoment. Even as the crises mount and subside, the anniversary of her diagnosis soon passes
NSIGHTBOOKS
&Stella Joy, Part II
Every precious moment
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7/28/2019 Stella Joy, Part II: Every Precious Moment
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IN2TORONTO STAR SUNDAY, DECEMBER 9, 2012 ON ON0
>>INSIGHT
Stella Joy, Part II Every precious moment
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7/28/2019 Stella Joy, Part II: Every Precious Moment
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ON ON0 SUNDAY, DECEMBER 9, 2012 TORONTO STARIN3
>>INSIGHT
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7/28/2019 Stella Joy, Part II: Every Precious Moment
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IN4TORONTO STAR SUNDAY,DECEMBER 9,2012 ONON0 ONON0 SUNDAY, DECEMBER 9,2012 TORONTO STARIN5
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Withoutthebodysexpression,whatisthesoul?Teenagechildrenwith DIPGsimilarlydescribetheiranxiety overdisappearing.When13-year-oldBryceMamowasbedriddenandcloseto deathfromDIPG,hedwakeup screaming,Imscared,hismotherwritesin Understandingthe
Journey:AParentsGuideto DIPG.Stellasage,bycomparison,is ablessing.Shehasspenttwo-thirdsofherlifenotbeingabletowalk.Andthoughheronlyreliableformof communicationnow isstickingout hertonguefor yes,that,too,seemsnormal:shehasspentmostofherlifenotbeingabletotalk.Imsureshe doesntrememberbe-fore,Mishisays.I alwaysrepeatwhattheexpertssaybecauseshehasnoframeof reference,sheprobablyfiguresthisiswhatissupposedtohappen.Wewereterrifiedshedbe sofrustrat-edand thatwould behorrible,but shesreallynot,Aimeeagrees.Even Iforgetshecould totallytalk.Stellaistoo youngto sufferanexisten-tialcrisis, unlikeBauby.Theaveragechild doesntdevelopasenseofhim-or herselfinthebiggerworld,andthe anxietythatcomes withthat,until aroundage8, accordingtoDr.WendyRoberts,directorof theNeuro-sciencesandMentalHealthResearchInstituteattheHospitalforSickChil-dren.Around12,asshe hitspuberty,she
startstothinkofherselfasanindividualapartfromher family.Still,childrenStellasage gothroughhugepersonalitychanges.They emergefromthe TerribleTwosinto aworld theyunderstandhasrulesand consequences.Theirgreybrains arebloomingnewwhiteconnections.By 3,they arestartingtodevelopa conscience.Thetumourinside Stellasbrainstemisnotstoppingher brainfromdeveloping,
justasitisntkeepingherbodyfromgrowing.Shecannotexpress them,butsheis buildingnewthoughts althoughwedontknowwhattheyare.Thetumouris puttingpressureonherbrain,though,by blockingthecerebro-spinalfluid fromescapingdownherspinalcolumn.That pressureisaffectinghermemoryand concentration,says Dr.UteBartels,a pediatricneuro-oncologist
atSickKids.ShehasfoundthatDIPGalsochangeschildreninanother way.Usually,amonthor sobefore diagnosis,theybe-comeclingier.WellneverknowwhatStellawouldhavebeenlike asa healthy3-year-old.Bothher parentsthinkshesstill thefieryplaygroundbully,laughinginwardlyatbarfandpoojokes.A coupleofmonthsago,shewould burpherbaby cousinXavier,hittinghimonthebackwithMishishelpand laughat that.She alwayslovedThreeStooges humour.Shesstilla sh--,Aimeesays.MishipicksupStellaandtakesherinsideto bechanged.Ourgirliswearingtwopairs ofdiapers now,thesecondadultdiapersher mothershavetrimmedtohersizeandtapedtogetherinthehopestheyll bemoreeffective. Butshestillleaksoutof themontotheirlaps.ShelaysStelladownonheroldchangetable.Ablackandwhitepaintingof asleepingbabyhangsonthewallaboveher.Asababy,Stellasfavouriteprankwasto kick
thatpainting.Youusedtothinkitwasso funny,Mishisays.Idgo, NoStella!Naaaa,says Stella.Mishitakesher handandtogether,theypushthepaintingtotheside.NoStella,dont dothat,Mishi repeats.Stellaseyeslightupandeveryoneofherteeth isrevealed.
STELLASMOMMIEShavebecomenurs-
ingexperts.Theyvelearnedhow to
depressaneedle ofanti-seizurePheno-barbitalintoa butterflyporton Stellasarmataglacialpace,soshe doesntsquirmin pain.Theyvelearnedhow topullthefecesfromherrectum,sinceherbraincanttellhermusclestopushitoutanymore.Theyadministerdropsofatropineinthefrontofhermouthsoshewontchokeon herown saliva.Theytalkmedicationslikedrugreps,keepingthemallinalocked,redtoolkitthewaymostofuskeepourbleachhighupandoutofreach.Theyvedeviseda chartfor dailydos-agesandtimes,whichtheysignaftereachadministration.Thereis Zofranfornausea,Ativanandondansetronforseizures,morphineforpain, RestoraLAXforthe constipationthemorphinecauses,Mishirattlesoff.Alongtheirvoyage,theyvecometodiscernpatterns.Everytwoto threemonths,Stellaslipsoffaplateauintoacoma-likestatefor upto 10days,eyeshalf-open,feverish,refusingevenhertreasuredbubbasmilk bottles.They
usuallycoincidewith anaddeddose ofmorphineoranti-seizuremedication.Bartelssaysthey likelycorrespondtoacutehydrocephalus,whichrecedeswhenStellasskull findssomeplaceelsetostorethefluid.Hermomsholdheronthecouch,calm-lywaitingtosee iftheirdaughterwillreturntothemagainthistime.Eachtimeshedoes,butlikealeakybuckethauledupfromthewell,withalittlebit less.She losessomethingmoreher distancevision,her smile,herabilitytoclosehereyes.Butshekeepsherlife.Insteadoffighting death,Stelladanceswithitandherparentsdancetoo.Theanniversaryofher diagnosis,June24,passes.Stella hassurvivedninemonthslongerthan expected.ShehaslivedaslongasmostDIPGpatientswhogetboth radiationandchemotherapy,andshe hadneither.Thequestionsurfaces againandagain:hasStellalivedlongerbecauseshegotnotreatment?Almosteverychild diagnosedwithDIPGgoesthroughsixweeksof
radiationtostall thetumoursgrowthandextendthe childslifefor anaverageofsix months,doctorssay.Issheanoutlierorthe newnorm?asksher palliativecarephysician,Dr.KevinBezanson.Ihonestly dontknowtheanswerto that.As anoncologist,Idimagine,thiswould atleastmakemereflect.Bartelsdoesntthink so.TheDIPGtumourgrowsdifferentlyin everychild,
shesays.Shes seenyoungchildrenlike
Stellasimilarlyplateau before,althoughscientistsarenot surewhy.Ifshedbeengiven radiation,itmayhaveextendedherlifespan evenlonger,butatwhatcostthatsnotforesee-able,Bartelssays.Does itchallengeourknowledge?Whenit comesto Stella,no.
BARTELSHAS specializedinbrain tu-moursfor13yearsandisaworldexpertonDIPG.But evenworldexperts arejustbeginningtounderstandthis disease.Muchofthathastodowiththetu-moursdelicatelocation.Until veryre-cently,biopsiesof thebrain stemwerelargelyprohibited,exceptin exceptionalcases.Theywere consideredtoorisky.Onepoorlyjabbedneedle couldkill achildinstantly,or leaveherbrain-dead.Soall understandingof thetumoursbiologywasguesswork,extrapolatedfromadultbrain tumours.Bartelsandher teambeganaskingtheparentsofchildren withDIPG todonatetheirtumoursafter deathonlyin 2002.Beforethen,most doctorsconsideredit
toodistressinga request.Ina paperBartelspublishedtwo yearsago,she saidshedfoundtheoppositetobetrue:Thefamiliesderivedcomfortfrom thehopethatscientific breakthroughscould bemade.TheSickKidsteamhascollected55DIPGtumoursto date(plus18morefromotherhospitals).Partsofall ofthemcanbefounddownoneofthoselaby-rinthinehallsonthethirdfloorof theHospitalforSick Children,onDr. Cyn-thiaHawkinscluttereddesk.Hawkinsisa pediatricneuropathol-ogist.She spendsherdays cuttingintochildrensbrain tumoursandlookingthroughher high-poweredmicroscopeattheresultingcells. Foreightyears now,shehas examinedtheDIPG tumour,searchingoutits biologyandweakness-es.Shehas discoveredthetumouris verymalignant,spreadingto otherpartsofthebrainin40percentofcases.Thisrevealswhyfocal radiationisnteffective,shesays.Morerecently,shediscovereda gene
fora particulargrowthfactorreceptorproteincalledPDGFRAin one-thirdoftheautopsiedDIPG tumours.Achemo-therapytrialtargetingthese proteinsisnowunderwayin theUnited States.Wereallyare makingprogress,shesays.Havewecured somebody?No.Isitdepressing?Yes.Doesit putother smallthingsat homeinto perspective?Yeah.DrawingsfromHawkinstwoyoung
childrenadorna corkboardbeside her
desk.Shetries toremain detacheddur-ingautopsies,staringonly atthe brain.Thatshardesttodo whena childappearsonthe metaltablein pyjamas,shesays.Sheunderstandsthe boxesof sterilewaxslidessittingonherdeskbrimwithheartbreakandmisery.Theyare separat-edby cardboardbookmarksand labelledDIPG.Soon, partof Stellawill beamongthem.Awhileback,AimeeandMishisignedthecontractto donateStellasbrainandtumourto research.Hawkinswilldo theautopsyherself.ItwillbethethirdunradiatedDIPGtumourshehasseen.Ofthe 55tumoursHawkinsteamhas collectedthemselves,only threewerenot radiatedonefromanewborn,onefromachildwhodied beforeradiationcouldstart,andthelastfromachildwhodiedalmostthreedecadesago (theteam inheritedthetumour).In allcases,the unradiatedtumourlookeddifferentfrom thebulk ofradiatedones.Thatsimportantbecausemostof the
scienceHawkinshasbeen developingisbasedonthebiologyoftumoursafterradiation.Scientistsarentsurehowradiationchangesthem.AsRuthHoffman,theeditorofUn-derstandingtheJourney:A ParentsGuidetoDIPG,putsit:Itmightgiveusamoreaccurateunderstandingof whatDIPGevenis.Itisstrangetothink,butthemonstroustumourthatiskillingStellawillbeavaluablegifttoscience.Onethingi sclear toBezanson,Stellaspalliativedoctor.Stellasstorymakesacaseforthehealingeffectsoflove.Ihopeshesetsanexampleforotherfamilies,hesays.Caremakesahugedifference.Thatgivespeople thewill toliveandpreventsa wholelotofotherproblems.A2011studyintheNewEnglandJour-nalofMedicineshowedthatpatients likeStellawho receivedpalliativecarehadlongersurvivalrates.Bezansonhasan elderlypatientwithend-stagedementiawho haslived for212yearsat home.Shedbedeadwithin
aweekina nursinghome,hesays.WhoknowshowlongStellamighthavelivedbeingshuttled toand fromscaryhospitalrooms?BezansonisleavingforAfricawithhisfamilysoon.HewillmisshisvisitswithStellaandher family,hesays.Thisiswhatlovelookslike,hesays.Itssadandits hardandunpredictableandunnerving.Sometimesourcultureonlywantsthegoodandshoosthebad
back.Itsclich butyou understandjoy
moredeeplywhen youveexperiencedsorrow.
ATTHEBACKOFHoffmansbook onDIPG,a groupof doctorswritealettertoparentsabouthope.Studiesshowdoctorsoftendelay dis-losinga fataldiagnosisinfeartheirpa-tientswilllosehope.Evenfalsehopecankeepyourheart frombreakinguntilyouareready.Otherstudiesshow parents,facingafataldiagnosisoftheirchild,willpushformoreaggressivetreatmentsthandoctorsrecommend.Inour culture,hopeis synonymouswithcure.Inthis context,Stellasfamilyandfriendshavegivenup onher.They didntfightforacureorhopeforamiraclethatwouldkeepher alive.Instead,theyhave acceptedthatshe isdyingandhave relishedeveryremainingdaywithher.Whatcanbemorelife-affirmingandhopefulthanthat?
Iknowtheendistheend,anditscom-ing,Aimeesays.Thatsallowedus tofocuson makingherhappy andcomfort-able,insteadof focusingonprolongingherlife.Stellahasshownthathopeisnotonlya
vehicle,itisa place.
THEREISApricefor thededicationStellasfamilyhas shownherand eachother.Everyoneinher familyis wound-ed.Everyonehaschanged.OnestickydayinJuly,theyallheaduptoThunderBeach onLakeHuron, whereAimeesfamilyhascottagedfordecades.Lastsummer,Stellaspentweekshere,playinginthe kayaksandservingimagi-narydoubledoublesfrom theplayhouseinthelocalpark.Thistime,sheiscarried
intothe waterbyAunt JuliaGonsalves,
herarmshanginglimply asher cousinGracieblastsher witha bazookawatergun.AimeesmotherMarilynEmerywatch-esher twogranddaughtersinthe water,stilltogether,one barelyhere.Ourfamilywas notbrokenbefore,shesays.Wedidntneedthistobringustogether.Herotherdaughter,AimeesyoungersisterAndrea,hastaken thesummeroffworktobewithStella.Alwaysslim,shehaslost evenmoreweight.Since Stellasdiagnosis,shesstoppedgoingout onweekends,spendingnights athomeinstead.Sheswithdrawnfromevenherdaughter,Gracie, whoshe noticesturnsmoretoherwifeJulia.Andtheyhavedecidednottohaveasecondchild.Afterthis,no way,saysAndrea,33.Imnotreligious,but Ido believethatyouputoutgoodstuff,youllgetgoodstuffback.Mysisterputsoutnothingbutgood.Youhaveto stoprationalizing.Itmakesnosense.Itschangedeverything.
AMONTH LATER,Stellabecomesa bigsisteragain.HerbrotherHugoarrivesonahotAugustnight,ina roomtwodoorsdownfromwhere Samwasborn.Stellawasntpresentat eitherbirth,butherpresencepermeatedboth.Tenmonthsearlier,theweight anddespairofherdiagnosishung heavilyin thehospi-talroom.Andreaheld Samwith tearsrollingdownher face.Tonight,sheis alovinganecdote.WhenMishiscervixmiraculouslyopensfourcentimetresin20minutes,midwifeChristieKavaratzisannounces,ThankyouStella. Youpavedtheway.Whatmakesthisevenmoretelling:HugolooksjustlikeStella.Hehasthesamechubbycheeks,pup tentnose,shallowchin,blueeyesandjetofrust-colouredhairshehadasababy.Doyouwanttoseehim?AimeeasksMishi.Youokaywiththat?Samsbirthtriggereda massiveanxietyattackforMishi.Shecouldntholdhimforfour days.Thistime, sheconsentsimmediately.
Stellaisgoingtobeso excitedtoseeyouforaminuteortwo,Mishitellshernewbornson.Funny,I thoughtIdbeveryemotionalbutIjustfeeltired.Stellapickedher secondbrothersnametoo.Shewhisperedit toMishionedaywhentheyweregoingthrough anamebook.Sincethen, abook calledKingHugosHugeEgohasbecomeher favou-riteread.Shegetshermotherstoreaditrepeatedlybystickingout hertongue.
THEBEAUTIFULSUMMER Stellahas
givenherfamilyisfading,andsoisshe.Shehasnthadanythingtoeat inninedaysoranythingtodrinkin four.Sheisdowntoicechips,whichrequirehermotherstopulldownherchinwiththeirthumbssoher mouthopens.SheisbackatherfavouritespotonMishislapon theliving roomcouch.Hereyesare openbut unfocused.Herforeheadseemsto haveexpanded.Herleftleg shakesnoticeably.Herbreathinghaschanged twosmall breathsfol-lowedbya five-secondpause.Herfamilyhasgatheredtosaytheirgoodbyes.Dr.Bezansonsreplacementhas come.Hernameis Dr.PawandeepBrar.Sheis31andfresh fromresidency.Shesportsblackjeansand hotpink toenailpolishandhasherdarkhairupin aloosebun.Stellahasdaysleft,shesays.Herhandsandfeetwillgetcoolersoon.Thepausesbetweenher breathswillstretchtoaslongas30 seconds.Whatmighthavetaken noeffort twoweeksagowillbetoodifficultnow,shesays.
Youarein precioustime.Mishiand Aimeehaveheardthis fourtimesbefore.They remaindry-eyed.SinceStellasdiagnosis,theyveusedqualityof lifeas theirbarometer.Thedefinitionhaschangedwith Stella,fromfunadventureto smilingto simplynotbeinginpain.Theresnot thatmuchqualityof any-thingleft,Mishisays,kissingthetipsofStellasfingers.Asmuchaswe wantherhere,wedontwantherhere likethis.AfterBrarleaves,AimeepicksuphergirlfromMishiandcracks openKingHugosHugeEgo.Itis abouta tinykingwhodronesontohis subjectsabouthisownmagnificenceuntilhis headswellsuplikeagiantpinkballoon.Abraveyoungwomandeflateshim.Thestorycouldbea parableaboutthefamilyspastyear.KingHugois death,andthewomanourgirl, teachingherfamilynottopanicbuttoenjoyeventhismoment,forthatsallanyofuseverhas.Aimeepausesoneachpage,runningStellashandsalongthe picturesand
remindingherof timessherodeahorseandlistenedto hergrandfatherPoppaplaythetrumpet.. .Yourspellhas openedupmy eyes,shereads,rubbinghercheek againstStellascurls.Ivebeenunkindand rude.Pleasestaywithmeandteachmehowtochangemyattitude.
Its clich but youunderstand joy moredeeply when youveexperienced sorrowContinuedfrom previouspage
Stella sleeps on
the couch in thecomforting armsof Aimee. Stellas
nurse has set up
a morphine
pump to keep
the little girl as
pain-free as
possible.
Stella Joy, Part II Every precious moment
Catherine Porter
kept a journal-
ists diary as she
joined Stella andher parents
throughout theirjourney. In a new
eRead, Porters
diary presents a
completely dif-
ferent way of approaching the Stella
story than what is appearing in these
pages. Stella is a compelling read. Itsavailable at stardispatches.com
STELLA EBOOKAVAILABLE
LEFT Mishi gives birth to baby
Hugo in August. As she did for
her brother Sam, Stella has
picked out his name.
BELOW By late August, Stella is
sleeping most of the day. You are
in precious time, her doctor tellsthe family.
Catherine Porter can be reached at
cporter@thestar.ca
Intimate
scenes ofStella, her
parents and
the loving
community
that surrounds
them.thestar.com/
videozone
STELLAONVIDEO
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