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Stella Joy, Part II

Every precious moment

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 the moment. Even as the crises mount and subside, the anniversary of her diagnosis soon passes

Stella treasures her milk bottles, "bubbas" as she calls them, but an inoperable brain tumour means there are often times she is so ill that she refuses them.

CATHERINE PORTER

Stella leans her temple against the forehead of a black goat that has mounted the fence. Thats not quite true: her mother Mishi Methven manoeuvres the little girls head toward the goat, since the tumour in Stellas brain stem has stolen her neck control. Hes soft isnt he? Mishi says, brushing Stellas shaky hand over the goats neck. The tumour has taken away her

hands motor skills, too. That is nice. Did you get a goat kiss? A light goes on in Stellas eyes and the 2-year-old smiles slowly, purposefully. It requires up to 43 muscles to show joy through your lips, and she must work to turn on every one. The sparrows swoop over Stella on this balmy grey morning in March. Eight months ago, she was diagnosed with diffuse intrinsic pontine glioma (DIPG), a rare and lethal brain tumour that strangles the bodys functions as it grows. Doctors expected the tumour to extinguish Stella within three months. Her light has dimmed, but its still on. The journey has been a difficult one for her family, bringing them time and time again to lifes dark edge. They have held three vigils now, with Stella slip-

ping in and out of coma-like states. Last week, her palliative care doctor said he was extremely concerned about leaving town given her state. This week, says Mishi, hes dumbfounded he used that word. Stella has bounced back again. The whole experience has forced Mishi and her wife, Aimee Bruner, to loosen their grip on the reins of their own lives. After months of waiting fearfully for Stella to die, theyve learned to live each day they have left with her. They are what all of us aspire to be full-heart, full-mind present. Her parents no longer see Stella as a dying child. They see her as a child who is navigating death. They are following her lead.
STELLA continued on IN2

ONE LITTLE GIRL, ONE BIG STORY

Over the course of a year, Stellas family, friends and complete strangers worked to give the ailing toddler a lifetime of experience. Star journalist Catherine Porter was there every remarkable step. Her chronicle of Stellas journey concludes Monday. It is also available at thestar.com and, in diary form, as a Star Dispatches ebook.

PHOTOGRAPHY BY TARA WALTON/TORONTO STAR

TORONTOS VISUAL LEGACY OFFICIAL CITY PHOTOGRAPHY FROM 1856 TO THE PRESENT
Published in 2009, this 10x11 soft-back edition contains nearly 200 archival images offering a visual overview of Torontos history, documenting attitudes and values expressed by City ofcials, from the 19th century to 2008.
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Stella Joy, Part II Every precious moment

She wants to get whatever is left of her life. This week, she just wants to live
STELLA from IN1

She has taken them back to Riverdale Farm, announcing last night between spoonfuls of vanilla ice cream, Peeee. Ewww. There were lots of pauses and hardly any sound because the tumour is strangling Stellas voice, but after some deductive thinking her mothers understood. Riverdale Farm is Stellas favourite

place in the world. Before she got sick, she loved to climb the fence and tell the copper-coloured pigs they stank and should pee on the potty, like she was learning to do. Its the place she will remain. Stellas moms have bought a plaque for her across the road in the Toronto Necropolis Cemeterys scattering garden, and her friends have planted a memorial tulip tree for her right outside the farms gates.

It will bloom every year for two brilliant weeks around Stellas birthday in April and turn the copper of her hair in fall. More than any other place, Riverdale farm holds the fullness of Stella her explosive joy and her heartbreaking tragedy. Stellas eyes are closing by the time her mothers carry her to the pig pen. Mishi strokes her hair. Aimee holds her trembling foot. She wont call the pigs today. Maybe another time. Maybe not. You are all tuckered out. What a nice way to go to sleep on the farm, Mishi says. She wants to get whatever is left of her life, she says of her daughter. This week, she just wants to live. Its really nice. Testament to her reclaimed hopefulness, Mishi is pregnant again, with sperm from the same donor who made both Stella and her little brother, 6month-old Sam (carried by Mishi and Aimee respectively). After months of darkness, she has pushed back up to lifes craps table.

Mishi walks with Stella through Necropolis Cemetery, where she and Aimee have bought a plaque in the scattering garden. Its across from Stellas beloved Riverdale Farm.

STELLA, THE SERIES

Saturday: The Diagnosis Today: Every Precious Moment Tomorrow: Final Days

WE ALL DIE. We dont like to think about it, but its there, an undeniable truth. We might die slowly years from now. We might die instantly a minute from now. One hundred years ago, we all would have seen death up close in our houses. Around 1900, life expectancy in North America was only 47 more than 30 years younger than today. Chances were very high of witnessing not only the death of your parents, but also of a sister or brother. More than half the people who died in 1900 were children under 14. Most of them were killed by an infectious disease such as tuberculosis, typhoid fever or diphtheria. Back then, your cousin died at home, surrounded by his extended family. Then, they washed his body, dressed him, laid him in a homemade coffin set in the front parlour for friends to visit. The tradition of the all-night, debauched wake, which often involved dancing with the body really continued until the 1950s in Newfoundland.
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Thats according to Katherine Ashenburg in her marvellous book, The Mourners Dance. The death is really and truly part of the living that continues, and it all falls within the same house, a woman named Donna Burke tells Ashenburg. Death was as constant and familiar as Christmas. Today, medical advances have beaten back those infectious diseases and greatly prolonged our lives. Most of us die in old age now of heart disease or cancer. While 80 per cent of deaths in the United States occurred at home in 1900, the reverse is true now: 80 per cent of deaths occur in hospitals or old-age homes, according to The Last Dance: Encountering Death and Dying, a textbook belonging to bereavement counsellor and former pediatric oncology nurse Andrea Warnick, a close friend of Stellas family. Few of us have wakes anymore. We say goodbye to our loved ones in another institution the funeral home. Culturally, we treat death as a failure. We forget our dead, unlike traditional African culture, which teaches the young to remember the names of their ancestors going back generations. We dont have any national holidays like Mexicos Day of the Dead, when families host all-night fiestas at their relatives gravesites. As a society, weve forgotten what dying looks like. Warnick says this is the basis of our fear of death. The human body knows how to die. Weve medicalized it so much, weve forgotten that. Its important for people to be around death more. The more we are exposed to death, the less anxiety over it well have as a culture. Aimee and Mishi have already broken cultural ground as a gay married couple. They are doing it again by keeping Stella at home to die rather than shuttling her from one hospital to another for medical treatments. And while Stella is only 2, her dying process strangely resembles that of an octogenarian. DIPG is stripping her of one faculty after another. She can no longer walk, her arms shake, shes lost muscle control of her neck. Although she had just mastered the potty a few weeks after her diagnosis, shes back to wearing diapers. Shes on a cocktail of medications and has to be spoon-fed her meals. Her words are disappearing. And while she has moments of vibran-

cy, she also has long lapses of semiconsciousness, when she stares blankly at the wall. Her parents often say shed fit in at a nursing home. ONE FREAKISHLY hot afternoon in late March, when people in Toronto are parading around in T-shirts and sandals, Stellas friend Flora Hay Draude is over for a play date. The two have been friends for most of their lives, since their mothers met at a moms group. Flora, so slight and blond, was the quiet and cautious one before. Our redhead was the loud, wild one. Now, their roles have reversed. Stellas voice has all but left her. Theyve already had their finger- and toenails painted four different colours and now they are playing Is anybody home? in the little wooden playhouse Stellas grandfather Poppa built in her backyard. They giggle side by side in the dark as Mishi knocks on the door. Its my turn, Flora announces, running outside in her bare feet and knocking. Shall we all go outside for a walk? Stella hasnt been able to walk for seven months. Mishi carries her outside and gives both girls turns on the slide, holding Stella in a firm grasp for the trip down. If Flora is confused by her friends condition, she doesnt show it. For months now, her parents have mixed books such as When Dinosaurs Die into her nightly routine. They talk regularly about Stellas tumour and how soon her friends body wont be here anymore and they will all be sad. Her mother, Karen Hay Draude, says shes amazed by how both girls have adapted. While Stellas pending death has heightened her own insecurities, Flora thinks its normal. And so does Stella. Stellas so brave because Flora is so brave, Mishi says as she guides Stella down the slide As a rule, 2-year-olds are exhausting. Their play dates are a relentless parade of activities. This one is no different. Mishi, her 412-months-pregnant belly protruding, keeps up the pace. They charge downstairs to Stellas old playroom to paint. Mishi sets down two pieces of paper, two brushes and some paint on a miniature yellow table. She sits down with Stella on her lap and dips one brush in green paint. Two weeks ago, Mishi made a discov-

ery while trying to force a brush into Stellas one functioning hand. Stella kept trying to bite the brush. At first, Mishi thought she was being naughty. Then she realized: Stella was offering a different solution. With her mouth, Stella moves the brush back and forth across the paper. Flora looks over and bites her brush. Flora is going to paint with her mouth, too, see Stella, Mishi says, manually tilting up Stellas forehead so she can see Flora. Isnt that funny? APRIL 18. It is Stellas birthday. She turns 3 today. She sits on Aimees lap on the front stoop in a splash of cold sunshine, feeding the birds. Her little brother Sam, now 6 months, sits happily in a plastic baby seat beside them. This is their morning ritual. Aimee rips bread into pieces and tosses them onto the driveway. Its hard to imagine a more urban setting, with a regiment of black garbage bins and navy recycling bins lining the street. But sparrows appear: one, two, three, four, five, all hopping about the concrete and the small yard. The crabapple tree, its purple leaves adorned with Easter eggs, becomes a symphony of chirping. Aimee tilts Stellas head up. You see them, right? Aimee says. She gets no answer. Stellas pupils dart back and forth. The cranial nerve controlling our eyes lateral muscle originates in the brain stems pons region, where Stellas tumour is growing. As a result, most children with DIPG develop double vision. See them coming closer and closer? Stellas eyes light up and her lips part, revealing her row of neatly separated white teeth.

ABOVE Stella clutches her homemade Stella doll while napping on the couch in late March. Her tumour is stripping her of her faculties.

BELOW Stella gets a kiss from Aimee while enjoying a warm May afternoon. Her eyes have trouble focusing and she can no longer sit up on her own.

Three years ago today, your mom was happy because she finally got the epidural, Aimee says of Stellas reluctant emergence from Mishis body. She had to wait five hours for it. The family didnt celebrate Stellas second birthday with a party. She was so little, they figured she wouldnt remember it. That was two months before she was diagnosed with DIPG, when they still had a lifetime of birthdays ahead. Since her diagnosis, Stella has celebrated her birthday with a big party every few weeks. Happy Birthday has eclipsed The Golden Girls theme song as her favourite tune. Last weekend, her mothers threw her a huge third birthday party in the pool at Variety Village. More than 60 people bobbed in the water, each taking a turn holding Stella. Later, most of them wept as they sang over her birthday cake. That day of the epidural was Mishis 30th birthday. Today is Mishis birthday, too. But shes no longer celebrating it. Today is a day to charge through and forget. Holidays are triggers for Mishi. They are lifes yardsticks. She cant reach them without measuring where shes been and where she is going. A year ago, Stella never watched birds placidly from anyones lap. She charged after them, laughing maniacally. Is Stella still that person, trapped inside her tomb-like body? Jean-Dominique Bauby suffered a fate similar to that of Stella. At 43, the former editor-in-chief of Elle had a severe stroke that flooded his brain stem. The result was locked-in syndrome full paralysis of the body apart from the ability to swivel his neck and blink his left eye. He couldnt move his mouth, his tongue, his hands. But like Stella, his mind was untouched. He wrote a poetic memoir called The Diving Bell and the Butterfly by blinking that eye. The book, later turned into an award-winning film, is both beautiful and painful to read. He describes the agony of not being able to talk, taste food, turn the soccer game back on after a nurse shuts the television off, reach out and ruffle his sons hair. My condition is monstrous, iniquitous, revolting, horrible, he writes. He can no longer be funny. Blinking out letters is too slow for wit. When his lover asks him on the phone if he is there, he starts to wonder if he is anymore.
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Stella Joy, Part II Every precious moment

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 tells the family.

Its clich but you understand joy more deeply when youve experienced sorrow
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Without the bodys expression, what is the soul? Teenage children with DIPG similarly describe their anxiety over disappearing. When 13-year-old Bryce Mamo was bedridden and close to death from DIPG, hed wake up screaming, Im scared, his mother writes in Understanding the Journey: A Parents Guide to DIPG. Stellas age, by comparison, is a blessing. She has spent two-thirds of her life not being able to walk. And though her only reliable form of communication now is sticking out her tongue for yes, that, too, seems normal: she has spent most of her life not being able to talk. Im sure she doesnt remember before, Mishi says. I always repeat what the experts say because she has no frame of reference, she probably figures this is what is supposed to happen. We were terrified shed be so frustrated and that would be horrible, but shes really not, Aimee agrees. Even I forget she could totally talk. Stella is too young to suffer an existential crisis, unlike Bauby. The average child doesnt develop a sense of him- or herself in the bigger world, and the anxiety that comes with that, until around age 8, according to Dr. Wendy Roberts, director of the Neurosciences and Mental Health Research Institute at the Hospital for Sick Children. Around 12, as she hits puberty, she starts to think of herself as an individual apart from her family. Still, children Stellas age go through huge personality changes. They emerge from the Terrible Twos into a world they understand has rules and consequences. Their grey brains are blooming new white connections. By 3, they are starting to develop a conscience. The tumour inside Stellas brain stem is not stopping her brain from developing,

just as it isnt keeping her body from growing. She cannot express them, but she is building new thoughts although we dont know what they are. The tumour is putting pressure on her brain, though, by blocking the cerebrospinal fluid from escaping down her spinal column. That pressure is affecting her memory and concentration, says Dr. Ute Bartels, a pediatric neuro-oncologist at Sick Kids. She has found that DIPG also changes children in another way. Usually, a month or so before diagnosis, they become clingier. Well never know what Stella would have been like as a healthy 3-year-old. Both her parents think shes still the fiery playground bully, laughing inwardly at barf and poo jokes. A couple of months ago, she would burp her baby cousin Xavier, hitting him on the back with Mishis help and laugh at that. She always loved Three Stooges humour. Shes still a sh--, Aimee says. Mishi picks up Stella and takes her inside to be changed. Our girl is wearing two pairs of diapers now, the second adult diapers her mothers have trimmed to her size and taped together in the hopes theyll be more effective. But she still leaks out of them onto their laps. She lays Stella down on her old change table. A black and white painting of a sleeping baby hangs on the wall above her. As a baby, Stellas favourite prank was to kick that painting. You used to think it was so funny, Mishi says. Id go, No Stella! Naaaa, says Stella. Mishi takes her hand and together, they push the painting to the side. No Stella, dont do that, Mishi repeats. Stellas eyes light up and every one of her teeth is revealed. STELLAS MOMMIES have become nurs-

ing experts. Theyve learned how to depress a needle of anti-seizure Phenobarbital into a butterfly port on Stellas arm at a glacial pace, so she doesnt squirm in pain. Theyve learned how to pull the feces from her rectum, since her brain cant tell her muscles to push it out anymore. They administer drops of atropine in the front of her mouth so she wont choke on her own saliva. They talk medications like drug reps, keeping them all in a locked, red tool kit the way most of us keep our bleach high up and out of reach. Theyve devised a chart for daily dosages and times, which they sign after each administration. There is Zofran for nausea, Ativan and ondansetron for seizures, morphine for pain, RestoraLAX for the constipation the morphine causes, Mishi rattles off. Along their voyage, theyve come to discern patterns. Every two to three months, Stella slips off a plateau into a coma-like state for up to 10 days, eyes half-open, feverish, refusing even her treasured bubbas milk bottles. They usually coincide with an added dose of morphine or anti-seizure medication. Bartels says they likely correspond to acute hydrocephalus, which recedes when Stellas skull finds someplace else to store the fluid. Her moms hold her on the couch, calmly waiting to see if their daughter will return to them again this time. Each time she does, but like a leaky bucket hauled up from the well, with a little bit less. She loses something more her distance vision, her smile, her ability to close her eyes. But she keeps her life. Instead of fighting death, Stella dances with it and her parents dance too. The anniversary of her diagnosis, June 24, passes. Stella has survived nine months longer than expected. She has lived as long as most DIPG patients who get both radiation and chemotherapy, and she had neither. The question surfaces again and again: has Stella lived longer because she got no treatment? Almost every child diagnosed with DIPG goes through six weeks of radiation to stall the tumours growth and extend the childs life for an average of six months, doctors say. Is she an outlier or the new norm? asks her palliative care physician, Dr. Kevin Bezanson. I honestly dont know the answer to that. As an oncologist, Id imagine, this would at least make me reflect. Bartels doesnt think so. The DIPG tumour grows differently in every child,

she says. Shes seen young children like Stella similarly plateau before, although scientists are not sure why. If shed been given radiation, it may have extended her lifespan even longer, but at what cost thats not foreseeable, Bartels says. Does it challenge our knowledge? When it comes to Stella, no. BARTELS HAS specialized in brain tumours for 13 years and is a world expert on DIPG. But even world experts are just beginning to understand this disease. Much of that has to do with the tumours delicate location. Until very recently, biopsies of the brain stem were largely prohibited, except in exceptional cases. They were considered too risky. One poorly jabbed needle could kill a child instantly, or leave her brain-dead. So all understanding of the tumours biology was guesswork, extrapolated from adult brain tumours. Bartels and her team began asking the parents of children with DIPG to donate their tumours after death only in 2002. Before then, most doctors considered it too distressing a request. In a paper Bartels published two years ago, she said shed found the opposite to be true: The families derived comfort from the hope that scientific breakthroughs could be made. The Sick Kids team has collected 55 DIPG tumours to date (plus 18 more from other hospitals). Parts of all of them can be found down one of those labyrinthine halls on the third floor of the Hospital for Sick Children, on Dr. Cynthia Hawkins cluttered desk. Hawkins is a pediatric neuropathologist. She spends her days cutting into childrens brain tumours and looking through her high-powered microscope at the resulting cells. For eight years now, she has examined the DIPG tumour, searching out its biology and weaknesses. She has discovered the tumour is very malignant, spreading to other parts of the brain in 40 per cent of cases. This reveals why focal radiation isnt effective, she says. More recently, she discovered a gene for a particular growth factor receptor protein called PDGFRA in one-third of the autopsied DIPG tumours. A chemotherapy trial targeting these proteins is now underway in the United States. We really are making progress, she says. Have we cured somebody? No. Is it depressing? Yes. Does it put other small things at home into perspective? Yeah. Drawings from Hawkins two young

Stella sleeps on the couch in the comforting arms of Aimee. Stellas nurse has set up a morphine pump to keep the little girl as pain-free as possible.

children adorn a cork board beside her desk. She tries to remain detached during autopsies, staring only at the brain. Thats hardest to do when a child appears on the metal table in pyjamas, she says. She understands the boxes of sterile wax slides sitting on her desk brim with heartbreak and misery. They are separated by cardboard bookmarks and labelled DIPG. Soon, part of Stella will be among them. A while back, Aimee and Mishi signed the contract to donate Stellas brain and tumour to research. Hawkins will do the autopsy herself. It will be the third unradiated DIPG tumour she has seen. Of the 55 tumours Hawkins team has collected themselves, only three were not radiated one from a newborn, one from a child who died before radiation could start, and the last from a child who died almost three decades ago (the team inherited the tumour). In all cases, the unradiated tumour looked different from the bulk of radiated ones. Thats important because most of the science Hawkins has been developing is based on the biology of tumours after radiation. Scientists arent sure how radiation changes them. As Ruth Hoffman, the editor of Understanding the Journey: A Parents Guide to DIPG, puts it: It might give us a more accurate understanding of what DIPG even is. It is strange to think, but the monstrous tumour that is killing Stella will be a valuable gift to science. One thing is clear to Bezanson, Stellas palliative doctor. Stellas story makes a case for the healing effects of love. I hope she sets an example for other families, he says. Care makes a huge difference. That gives people the will to live and prevents a whole lot of other problems. A 2011study in the New England Journal of Medicine showed that patients like Stella who received palliative care had longer survival rates. Bezanson has an elderly patient with end-stage dementia who has lived for 212 years at home. Shed be dead within a week in a nursing home, he says. Who knows how long Stella might have lived being shuttled to and from scary hospital rooms? Bezanson is leaving for Africa with his family soon. He will miss his visits with Stella and her family, he says. This is what love looks like, he says. Its sad and its hard and unpredictable and unnerving. Sometimes our culture only wants the good and shoos the bad

back. Its clich but you understand joy more deeply when youve experienced sorrow. AT THE BACK OF Hoffmans book on DIPG, a group of doctors write a letter to parents about hope. Studies show doctors often delay dislosing a fatal diagnosis in fear their patients will lose hope. Even false hope can keep your heart from breaking until you are ready. Other studies show parents, facing a fatal diagnosis of their child, will push for more aggressive treatments than doctors recommend. In our culture, hope is synonymous with cure. In this context, Stellas family and friends have given up on her. They didnt fight for a cure or hope for a miracle that would keep her alive. Instead, they have accepted that she is dying and have relished every remaining day with her. What can be more life-affirming and hopeful than that? I know the end is the end, and its coming, Aimee says. Thats allowed us to focus on making her happy and comfortable, instead of focusing on prolonging her life. Stella has shown that hope is not only a vehicle, it is a place. THERE IS A price for the dedication Stellas family has shown her and each other. Everyone in her family is wounded. Everyone has changed. One sticky day in July, they all head up to Thunder Beach on Lake Huron, where Aimees family has cottaged for decades. Last summer, Stella spent weeks here, playing in the kayaks and serving imaginary double doubles from the playhouse in the local park. This time, she is carried

into the water by Aunt Julia Gonsalves, her arms hanging limply as her cousin Gracie blasts her with a bazooka water gun. Aimees mother Marilyn Emery watches her two granddaughters in the water, still together, one barely here. Our family was not broken before, she says. We didnt need this to bring us together. Her other daughter, Aimees younger sister Andrea, has taken the summer off work to be with Stella. Always slim, she has lost even more weight. Since Stellas diagnosis, shes stopped going out on weekends, spending nights at home instead. Shes withdrawn from even her daughter, Gracie, who she notices turns more to her wife Julia. And they have decided not to have a second child. After this, no way, says Andrea, 33. Im not religious, but I do believe that you put out good stuff, youll get good stuff back. My sister puts out nothing but good. You have to stop rationalizing. It makes no sense. Its changed everything. A MONTH LATER, Stella becomes a big sister again. Her brother Hugo arrives on a hot August night, in a room two doors down from where Sam was born. Stella wasnt present at either birth, but her presence permeated both. Ten months earlier, the weight and despair of her diagnosis hung heavily in the hospital room. Andrea held Sam with tears rolling down her face. Tonight, she is a loving anecdote. When Mishis cervix miraculously opens four centimetres in 20 minutes, midwife Christie Kavaratzis announces, Thank you Stella. You paved the way. What makes this even more telling: Hugo looks just like Stella. He has the same chubby cheeks, pup tent nose, shallow chin, blue eyes and jet of rustcoloured hair she had as a baby. Do you want to see him? Aimee asks Mishi. You okay with that? Sams birth triggered a massive anxiety attack for Mishi. She couldnt hold him for four days. This time, she consents immediately. Stella is going to be so excited to see you for a minute or two, Mishi tells her newborn son. Funny, I thought Id be very emotional but I just feel tired. Stella picked her second brothers name too. She whispered it to Mishi one day when they were going through a name book. Since then, a book called King Hugos Huge Ego has become her favourite read. She gets her mothers to read it repeatedly by sticking out her tongue.

STELLA EBOOK AVAILABLE

Catherine Porter kept a journalists diary as she joined Stella and her parents throughout their journey. In a new eRead, Porters diary presents a completely different way of approaching the Stella story than what is appearing in these pages. Stella is a compelling read. Its available at stardispatches.com

THE BEAUTIFUL SUMMER Stella has given her family is fading, and so is she. She hasnt had anything to eat in nine days or anything to drink in four. She is down to ice chips, which require her mothers to pull down her chin with their thumbs so her mouth opens. She is back at her favourite spot on Mishis lap on the living room couch. Her eyes are open but unfocused. Her forehead seems to have expanded. Her left leg shakes noticeably. Her breathing has changed two small breaths followed by a five-second pause. Her family has gathered to say their goodbyes. Dr. Bezansons replacement has come. Her name is Dr. Pawandeep Brar. She is 31and fresh from residency. She sports black jeans and hot pink toenail polish and has her dark hair up in a loose bun. Stella has days left, she says. Her hands and feet will get cooler soon. The pauses between her breaths will stretch to as long as 30 seconds. What might have taken no effort two weeks ago will be too difficult now, she says. You are in precious time. Mishi and Aimee have heard this four times before. They remain dry-eyed. Since Stellas diagnosis, theyve used quality of life as their barometer. The definition has changed with Stella, from fun adventure to smiling to simply not being in pain. Theres not that much quality of anything left, Mishi says, kissing the tips of Stellas fingers. As much as we want her here, we dont want her here like this. After Brar leaves, Aimee picks up her girl from Mishi and cracks open King Hugos Huge Ego. It is about a tiny king who drones on to his subjects about his own magnificence until his head swells up like a giant pink balloon. A brave young woman deflates him. The story could be a parable about the familys past year. King Hugo is death, and the woman our girl, teaching her family not to panic but to enjoy even this moment, for thats all any of us ever has. Aimee pauses on each page, running Stellas hands along the pictures and reminding her of times she rode a horse and listened to her grandfather Poppa play the trumpet . . . Your spell has opened up my eyes, she reads, rubbing her cheek against Stellas curls. Ive been unkind and rude. Please stay with me and teach me how to change my attitude.
Catherine Porter can be reached at cporter@thestar.ca

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