7/28/2019 Stella Joy, Part II: Every Precious Moment

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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

7/28/2019 Stella Joy, Part II: Every Precious Moment

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>>INSIGHT

Stella Joy, Part II Every precious moment

7/28/2019 Stella Joy, Part II: Every Precious Moment

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ON ON0 SUNDAY, DECEMBER 9, 2012 TORONTO STARIN3

>>INSIGHT

7/28/2019 Stella Joy, Part II: Every Precious Moment

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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