Stella Joy Bruner-Methven was toldshe had days left to live. Sure enough,she bounced back. The 3-year-oldnever met a rule she didn’t take plea-sure in breaking.Nine days after she stopped eating and drinking anything but ice chips,she awoke, opened her eyes — wide andclear — and demanded some breakfast.Since she could no longer speak, shedid that by sticking out her tongue.She then proceeded to eat two bowlsof porridge, a generous helping of her11-month-old brother Sam’s applesauce, some chocolate Timbits hergrandfather Poppa brought over, twobottles of milk . . .“Stella is just eating some macaroniand cheese, don’t mind her,” her moth-er Aimee Bruner says as Dr. Pawan-deep Brarenters their East York house.Brar is Stella’s palliative care doctor.Ten days ago, she warned Stella’s moth-ers their daughter Stella had days left.But here she is, sitting on Aimee’s lapon her favourite couch, digging into hersecond bowl of macaroni and cheese.Her ginger hair has been pulled intotwo little pigtails. Her fingernails arepurple. She is wearing a red Super GirlT-shirt. Her eyes are still wide andalert.She opens her mouth, and over sec-onds, so faintly you have to lean in tohear, breathes the word “Mom . . . ma.”“We’re hardly ever wrong about this,I’m not going to lie,” Brar says. “I’m very surprised.” Ayear and three months ago, Stellawas diagnosed with diffuse infiltrativepontineglioma (DIPG) — a rare braintumour that kills its child victims aftertorturing them by slowly and methodi-cally cutting their brain’s commandover each of its functions. DIPG buriesits victims in their stony bodies whilekeeping their brains alert, so they canwatch it happen.There is no cure. Most parents agreeto six weeks of radiation to hopefully delay the tumour’s advance and granttheir child what doctors grimly call a“honeymoon period.” Stella’s twomothers, Aimee and Mishi Methvenopted against that. They didn’t wantany of their daughter’s precious re-maining time spent in hospital.Doctors expected Stella to live threemonths. Yet here she is, back from thebrink yet again.Her family called off the vigil, packedup the trays of sandwiches and bou-quets crowding their kitchen counters,asked a friend to hold off building an-other wooden casket to fit Stella’slengthened body (she has grown 10inches since she was diagnosed), andstepped back out into the warmth of September with their beautiful, funny child.Over the past week, our girl has playedin the sandbox and the backyard plasticpool. She’s had her face painted at anearby farmers’ market and rode onher mothers’ laps on the swings. Thismorning, she wiggled her torso in de-light at the sight of the elevator doorsopening and closing at the library.Her mothers bought a new minivan —using some of the $65,000 friends andstrangers have donated to the family since Stella’s diagnosis for a down pay-ment — to fit all three of their kids, andplanned their fourth trip to Great Wolf Lodge.Stella clearly has some living left to do.Brar stares quizzically at Stella. Thishas been the 3-year-old’s dance patternwith death — 10 steps toward its dark shadow, then a hop back into the light. As it grows in the brain stem, the tu-mour blocks the flow of cerebral-spinalfluid. This causes pressure on the brain,called hydrocephalus. Brar figures thisis the cause of Stella’s coma-like states.Then there is a shift, and the pressureis relieved.But the tumour is still growing. Thereis no doubt of that. And eventually, itwill cut the command to Stella’s heart-beat or breath.DIPG has a 100-per-cent mortality rate. Eventually it kills all of its young victims. Stella won’t be different. Butthat could be months away. Gloriousmonths. As Brar says her goodbyes, Stellafinishes her third bowl of macaroni andsticks out her tongue. Translation: onemore bowl please.
IT IS A GREY,
warm day in mid-Octo-ber. The green leaves of the flowering crabapple tree outside the family’sbungalow show a tint of yellow.Step inside, and the first thing you’llnotice is Stella’s absence. Her favouriteliving room couch is empty.Our girl is lying in the middle of hermothers’ king-size bed, between Mom-my Aimee and Auntie Andrea Bruner,whom everyone calls Andgie.Stella’s ginger hair glimmers softly onthe white pillow. Her face is calm andivory-coloured. Her eyes are half-closed.The room echoes with the rhythmicsound of her sucking her tongue, click-ing like a metronome.Her most recent honeymoon lasted adelicious one and a half months. But it’sover now.It’s been five days since she ate ordrank anything. The ice chips her aun-ties slip into her mouth mostly dribbleout.She hasn’t woken up for two days.“I can’t believe this is my baby girl,” Aimee says, holding Stella’s hand. It islong and misshapen, knuckles curledlike a grandmother’s after years of arthritis.“We are sad for you, baby girl,” Auntie Andgie says softly from her other side.“I’m sad for us,” says Aimee.The family is back in vigil mode. They take turns lying beside Stella, holding her hands, whispering their love to her.She is never alone.Close family friend and children’sbereavement counsellor Andrea War-nick has advised Aimee and Mishi totell Stella it’s all right for her to leave.That they will be OK without her.“Kids have the same protective in-stinct for their parents as parents dofor their kids,” says Warnick.Stella might not be holding on out of stubbornness, but concern for hermothers.“I told her, ‘It’s OK to go,’ ” says Aimee,“but Mishi is not ready to do that yet.”It’s the final act of parenting — sacri-ficing your own heart again to givesolace to your child.The truth is, no one is ready for Stellato leave. They’ve had a year more thanpromised since her diagnosis and,every moment has been precious. But itwill never be enough.“We are going to be so lost,” Mishisays, coming into the room with hersister, Heather.“We’ve spent so long being her moms,what will we do all day?” she continues,nuzzling Stella’s neck. “What will weever do that is as meaningful as this?”
SINCE THAT WRETCHED
night at theHospital for Sick Children when Aimeeand Mishi first heard the acronymDIPG and their bright shiny worldshattered, they’ve said they wantedStella to have a good death.It’s an obscene term they’ve learnedfrom their friend Warnick. What does it mean?For a start, it means no pain. No phys-ical pain and, more important, no psy-chological pain.That’s why palliative doctors like Brartalk to their patients about legacy, aswell as morphine.Most of us want to settle things beforewe go.For some, that means finishing thatdoctoral thesis, Brar says.For others, it’s writing a reflectiveessay about their life or spending thoselast days with their far-flung lovedones.It’s also about resolving the fear of being forgotten, Warnick says. Unlike Africa or Central America, we North Americans do a lousy job of remem-bering our dead. That has deep impli-cations.“For parents of kids dying, that trans-lates into, ‘Are people going to forgetmy child?’ ” she says. “ ‘Are they nevergoing to bring up his or her name?’There’s a saying, ‘Mentioning my child’s name may make me cry, notmentioning my child’s name willbreak my heart.’ ”Stella’s family has prepared her lega-cy. They’ve ordered 500 metal starswith her name on them. Stella is Latinfor star, and since her diagnosis hermothers have thought of her as ashooting star. They want her friends toleave the Stella stars in places theirdaughter never got to see, so throughthem she’ll continue to grow. Already,the female directors at the MountPleasant Visitation Centre, whereStella’s funeral will take place, have leftStella stars in China and Florida’sDisney World.Their friends have planted a tuliptree in her honour outside the gates of her favourite place in the world, River-dale Farm. A bench will soon go nextto it with her name.Every Christmas Eve, her family plans to decorate that tree. And they will light a candle for Stellaevery single day in April, the month of her birthday.“Stella will always be part of thefamily,” Warnick says.The last thing left is to make a deathplan, similar to a birth plan. They can’tcontrol when Stella goes, but they canmake sure she isn’t in pain and issurrounded by her loving family. Hermothers want to hold her alone forher last breath.
STELLA IS SLOWLY
disintegrating before our eyes. Her rib cage pro-trudes, her once-chubby belly sinks. When Mishi lifts up her loose redsweatpants to prepare for a new mor-phine injection site, she reveals astick-thin thigh.Her sunken eyes are red.Our poor, beautiful girl is dying fromabrain tumour. But she looks like sheis starving to death.Mishi has to be reminded of this,time and time again.“Eating less is a symptom of herdying, not the cause,” Brar repeats. “If we force people to eat, they don’t gainweight, they don’t feel better, they don’t have more energy.”Most DIPG patients get feeding tubes inserted during their final days,when the tumour steals their ability toswallow. It’s done to treat their des-perate parents, but not them.Feeding your sick child is as instinc-tive as it gets.But there are risks to inserting afeeding tube, Brar tells Stella’s parents.Tubes can get infected.
Stella Joy, Part III
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Now 3, Stella has created a dance pattern with death — 10 stepstoward its dark shadow, then a hop back into the light. Yet as thehot summer rolls into fall, she is getting thinner and thinner . . .
During the more than a year that Stellahas been living with a terminal braintumour, she has outgrown the originalpine coffin a family friend built for hertiny body. In late August, AuntieAndgie measures her lean frame so anew coffin can be built.
TARA WALTON/TORONTO STAR
It‘s October, and Stella continues to deteriorate. Hermothers, family and friends keep a constant watch.
TARA WALTON/TORONTO STAR
Over the courseof a year, Stella’sfamily, friendsand completestrangers workedto give the ailingtoddler a lifetimeof experience.Star journalistCatherine Porterwas there everyremarkable step.Her three-partchronicle ofStella’s journeyappearedSaturday throughtoday. The fullseries is availableat thestar.com
ONE LITTLEGIRL, ONEBIG STORY