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Stella Joy, Part I

The diagnosis
The little girl with the fiery personality is living on stolen time as an inoperable tumour grows in 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

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. Catherine Porter was there for every remarkable step. Her chronicle of Stellas journey appears today through Monday. It is also available at thestar.com and, in diary form, as a Star Dispatches ebook.

Stella Joy Bruner-Methven sits on her favourite couch with her two mothers on a bright October morning and helps plan her funeral. She is 2. Her loose orange curls catch the soft light filtering through the living rooms lead-pane windows. Her nails are painted apple green, to match her frilly CATHERINE shirt. PORTER Shes been groggy for the past two weeks, sleeping for long stretches and suffering seizures. She stopped breathing two nights ago for seven seconds and her mommies thought she was gone. But, here she is, alert as a ferret, sitting erect and staring widely at the pretty woman with the shiny lips and big binder talking to her mothers about her upcoming death. Stella was diagnosed with an inoperable brain tumour and given three months to live. That was three and a half months ago, in June 2011. She is here on stolen time. Why did you choose the Salutation to the Dawn as the first reading? asks the pretty lady, a life-cycle celebrant named Linda Stuart. I grew up at camp, I always wanted Stellie to go to camp,

says her mother Aimee Bruner, tears brimming in her eyes. Its a little bit seize the day, which is pretty important to us now. What about this other poem by Kahlil Gibran? Now, Stellas other mother, Mishi Methven, responds: If there is a lesson for us to learn from what were going through: our grief is our own. Stella is happy. She loves her life. Before she got sick, Stella would never have sat here this long. Shed be drawing on the walls in the kitchen. But the tumour has changed her. It has made her legs stop working, her hands shake and her head throb. It has also converted her to cuddles. While her mothers talk, she strokes their cheeks and grabs their hands. Its as if, at 2, she wants to console them.
STELLA continued on IN2

Stella Joy Bruner-Methven was diagnosed in June 2011 with DIPG diffuse infiltrative pontine glioma a rare and lethal brain tumour. She was given only three months to live.

PHOTOGRAPHY BY TARA WALTON/TORONTO STAR

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Stella Joy, Part I The diagnosis

If you are going to pray . . . pray shes peaceful and happy and comfortable.
STELLA from IN1

But the tumour hasnt doused her fire. Shes still Stella Joy a starburst of energy. When the conversation gets too boring, she decides its time to add her thoughts. Im going . . . say . . . something, she announces in the halting, creaky-door sound that has become her voice. Im . . . going . . . say . . . Im . . . a . . . piglet. She scrunches up her face like her beloved pigs at Riverdale Farm. Then she snorts twice. SINCE SHE BURST into a crowded hospital room with a thatch of red curly hair, Stella Joy has been what people politely call a spirited child. Even as a baby, she was bursting with energy and attitude. Her birth mother, Mishi, whom she calls Mama, was never allowed to sit during play dates. She had to bounce Stella, facing outwards. Stella crawled first among her baby friends, walked first, talked first. She didnt sit on slides, she dove down them. She didnt lie on the change table, she bucked. She didnt wait her turn, she snatched it. She liked to tell people loudly, I dont like you. She set a record at her daycare for incident reports 27 in 18 months pushing, biting, clocking her friends and then giggling about it later. She laughed during time-outs. She particularly loved Three Stooges humour. If you tripped and hit your head on something, she exploded in wide-mouthed giggles, revealing each of her Chiclet teeth. She even laughed in her sleep, which her parents found endearing. Stella loved accessories: headbands, scarves, hats, bracelets, necklaces, sunglasses, nail polish. The more the better, and preferably all at the same time. She threw a fit every morning when the daycare workers made her leave her

polka-dot purse in her cubby. At 2, she was exhausting and funny and destined to rule the world. Her friends parents admired and pitied her parents. Then, in the late spring of last year, her moms noticed a small tremor in her right hand as she ate crunchy cereal one morning. She was walking a little pigeon-toed, too. Mishi blamed it on the cheap sandals Aimee had bought at Zellers. So, she went to the Eaton Centre on a lunch break and dropped $150 on pink Geoxes. Stella called them her doctor shoes because two mornings later, she wore them to visit the Hospital for Sick Childrens emergency department. Her pediatrician was on holiday, so her mothers decided to stop in at 6 a.m. to get her some antibiotics for what they assumed was an inner-ear infection. They were so sure it was nothing, they each called their offices to say theyd be a half-hour late. And just like that, their perfect, happy life fell apart. Stella was admitted. Within the first four hours, shed seen three specialists. Had she been bitten by a mosquito recently? She was scheduled for an MRI that night. After midnight, a team of doctors in blue scrubs marched in and woke the family up with devastating news. The words they heard through the fog: inoperable; mass; oncology; malignant. Mishi fainted and triggered a code blue, with five nurses working on her. Paramedics shuttled her on a stretcher to Toronto General Hospital, across the street. Aimee, who was five months pregnant, kept a startled Stella from falling off Mishis lap. Then she went into machine mode, phoning relatives for help. Stella was diagnosed with DIPG diffuse infiltrative pontine glioma a rare and lethal brain tumour that af-

fects only children. Pediatric oncology doctors consider it the most horrific diagnosis they can make. While tremendous medical advances over the past 40 years have pushed the survival rate of other childhood cancers to 80 per cent, DIPG offers no hope. It kills 90 per cent of its patients within two years, most within 12 months. The other 10 per cent, doctors think, were likely misdiagnosed. Physicians at the Hospital for Sick Children diagnose two to six children with DIPG every year. Most arrive at the hospital like Stella entirely healthy apart from some small, seemingly benign problem such as a squint, a headache or a wobble. Then you disclose to them their children will most likely not be alive in one year, says Dr. Ute Bartels, a pediatric neuro-oncologist and a world expert on DIPG. Hearing this, most parents go into denial, she says. How can she be sure after looking at some black and white images of their precious childs brain? The only other symptom of DIPG: regular laughter while asleep. DESPITE DECADES of research, doctors still understand very little about DIPG. Here is what they do know: the high-grade tumour emerges only in children, mostly between 5 and 9 years old, but it has killed newborns and teenagers, too. It is not genetic or environmentally caused. Instead, it is triggered by a random DNA malformation. The tumour spreads through the midsection of the brain stem, called the pons, like a blue drop of dye in a glass of water, Bartels says. Unlike tumours that form a solid mass, it permeates the pons, so to a naked eye the cancer cells are indistinguishable from healthy cells. The pons is the brains Grand Central Station. It not only houses the cranial nerves for essential functions like breathing, swallowing and regulating the heartbeat, but it is the brains central nerve pathway, ushering signals to the body below. As DIPG saturates it, those nerve pathways are shut down like switches on a central power box. One day the child will no longer be able to walk, another she will no longer be able to sit up or hold up her head, then she will lose her voice and maybe her vision, until finally, the command to the heart is cut and the lights go out. But until then, Stellas brain would remain on. This is what makes DIPG especially cruel. It destroys the brains

Life-cycle celebrant Linda Stuart, left, meets with Stella and her two moms, Aimee Bruner and Mishi Methven, right, to discuss Stellas funeral.

STELLA, THE SERIES

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

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Intimate scenes of Stella, her parents and the loving community that surrounds them.
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ability to command, but not to think and understand what is happening. While chemotherapy and radiation have managed to restrain other malignant brain tumours, theyve had no effect on DIPG to date. Even trials of the most toxic, high-dose chemotherapy have not slowed its progress. The tumour, doctors say, is crafty: it changes its DNA to evade the effects of chemotherapy. The only treatment that has proven slightly effective is six weeks of focal radiation. In most of cases, this stalls the tumours growth, granting the child what doctors grimly call a honeymoon period of no new symptoms. On average, that honeymoon lasts six months. Some children get a whole year. But there is no guarantee. Some kids get only a week. Anecdotally, one in five children with DIPG get no honeymoon whatsoever, only mild nausea and lethargy. In every documented case, the honeymoon ends abruptly. Once the symptoms recur, we know the children will be dead in three months on average, Bartels says. But, since Stella was only 2, radiation posed its own problems. There was no way this wild child would lie still strapped to a table for three minutes while the radiation zapped the tender spot behind her ear. Shed have to be sedated with general anesthesia, which would make her groggy. So her parents were presented with a horrific gamble: do they risk six weeks of their precious daughters still-vibrant life now for a possible few extra months later? That night, they came to the same decision. Stella would not get radiation or any other life-prolonging treatment no shunts, no feeding tubes and a do-notresuscitate order. Two days later, when her moms met Dr. Bartels for their formal consultation, they were also joined by Dr. Adam Rapoport the hospitals medical director of palliative and bereavement service. This was the exact opposite of what I normally get, Bartels says. Faced with the death of their children, most parents fight to the very end. Out of 27 children Bartels diagnosed over six years ending in 2008, only three didnt get radiation two because they died before it could be administered. Parents of more than half those children also chose a chemotherapy trial.
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That trial usually causes terrible nausea and other side effects. Aimee and Mishi wanted quality over quantity of life. They would get no medical honeymoon with Stella. But they would make sure her last days were full of everything a honeymoon promises love, happiness, delight. Dr. Bartels told them that without radiation, they could expect Stella to live three months. FOR A CHILD, three months is a lifetime. Stella spent that summer radiantly. Both her mothers took leaves from their work. They delighted in her favourite places the library, the park, the zoo, Riverdale Farm, where she loved to berate the copper-coloured pigs for not peeing in the potty. They celebrated her birthday at least once a week. They swam at cottages and met Cookie Monster in Sesame Place, Penn. Before the flight down, Stella got to sit in the copilots chair until it was time to buckle up. Then she had to be wrestled up the aisle, screaming: No! This is my plane! That man is not sharing! She had ice cream for breakfast and didnt have to brush her teeth. She was supposed to move from her crib into her own big-girl bed, but instead, she got to sleep between her mothers. They bought a new, king-sized bed, so Stella and Aimees swelling pregnant belly would both fit comfortably. If she noticed the growing tremor in her hand or the increasing difficulty she had walking, she didnt let it stop her. Her headaches were kept under control by Advil and Tylenol. She thinks she won the life lottery, Aimee said in August. Shes never been 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

Stella gives kisses to her puppet 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.

longer stand up on her own. Last night, she told Aimee she couldnt lie down by herself. Stella is rapidly receding down the developmental milestones chart. Her headaches have worsened, too. She often clutches the hair at the back of her head. She now takes regular doses of morphine and anti-nausea medication to combat the effects of swelling in her brain. The drugs, the tumour and the hydrocephalus pressure from cerebrospinal fluid that cant drain past the tumour have individually or in combination made her fade. Most of the time now, she is dazed eyes half-mast and unfocused. She returns to her old fiery self for only a few hours every day. Even then, all she wants to do is sit on her comfy living room couch, wrapped in Mishis arms.

Her parents are terrified. Its one thing to decide to accept death in theory. Its another to watch your child die. To fight a disease with a 100-per-cent mortality rate might be futile, but it seems less painful than facing death straight-on. Hope is a powerful opiate. Most parents of children with DIPG hope, till the very end, that theirs might be the first kid who beats this terrible disease. Mishi and Aimee have a different kind of hope. They hope Stella has a good death. If you are going to pray for something, Mishi often tells strangers who say they are praying for a miracle, pray shes peaceful and happy and comfortable till the end. But that doesnt mean they are at peace.

Each morning, they wake up fearful. Will she lose the rest of her speech today? Or will she have a violent seizure and die instantly? Often, children with DIPG dive off a plateau, going from stable to dead in two weeks. What they fear most is that she will suffer. They fear the moment she goes blind and is alone in the dark. Even when shes alive, she wont be herself, says Aimee, whom Stella calls Mommy. Thats what Im dreading the most. They fear the box of medications and needles theyve left unopened in Stellas bedroom. Their fear their life without her, when they are no longer Stellas parents.
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LEFT Stellas grandfather Noel Methven, known as "Poppa," arrives early each morning to make his girls tea and toast. Its become his ritual of comfort.

Stella Joy, Part I The diagnosis

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We are grieving something that hasnt even happened yet, Aimee says. When she is alert, they play quiet games on the couch Mr. Potato Head goes shopping, and nail salon. They read her favourite book, Stella, Queen of the Snow, about a little red-haired girl and her brother, Sam. (She thinks it was written about her, especially since Mommy is having a boy soon.) They try their best to be brave, even during conversations like this one: Stella, do you know you are going to die? Mishi asks the morning the lifecycle celebrant is due to come to finish planning Stellas funeral. Stella nods her head. Does that make you happy or sad? Stella answers: Happy. Why? Because . . . youre . . . sad . . . now. Youre going to miss us but youre going to come visit, right? says Mishi in a sing-song voice. Going . . . come . . . visit . . . Mama, Stella responds. Thats good. Mama is going to miss you too because I love you, Mishi says. Then, she leans down and kisses Stella on the cheek. AIMEE AND MISHI sometimes joke blackly that they were designed for this tragedy. Aimee, 34, is the director of operations at Camp Oochigeas, a summer camp for kids with cancer, and has long known Dr. Bartels and Dr. Rapoport. Her mother, Marilyn Emery, is the president and chief executive officer of Womens College Hospital. Theyve both seen cancer up close. They know it hits indiscriminately. They never assumed their family would be exempt. Aimees best friend from childhood summers is Andrea Warnick. She is a grief counsellor for kids. She has a masters degree in thanatology the study of death and dying. Warnick is passionate about death the way many people are passionate about hockey. Long before Stellas diagnosis, Aimee and Mishi had been regularly treated to Warnicks stump speech on how death-phobic we are as a society, how we dont honour our dead as they do in Africa or Central America, how our culture sees it as a failure versus a natural part of life . . . When Stella was diagnosed with DIPG, her parents knew more about childhood cancer and death than most of us. They hurdled the denial stage of grief. Mishi, 32, worked as an administrative assistant for the psychiatric department at St. Michaels Hospital. Now, she uses many of the drugs her colleagues talk about antidepressants, anti-anxiety pills, sleep medications. STELLA LIVES IN a little brown brick bungalow in East York. There is a flowering crabapple tree on the small patch of grass out front, and a playhouse her grandfather Noel Methven, whom she calls Poppa, built for her out back. Poppa lives with Mishis older sister Heather Methven in a bungalow directly across the street. Mishis mother, Margaret Mohr, whom Stella calls DeeDee, lives in the house directly behind hers, along with Mishis teenage brother, Tristan. The two houses share a backyard. Before her diagnosis, Poppa would pick her up most days from daycare and bring her home to her favourite couch, where shed sit with her Auntie Heather drawing or watching an episode of The Golden Girls. Then, on Saturdays, shed wake up DeeDee and Uncle Tristan for breakfast and have dinner with her other grandparents. If Mishi had planned an adventure, her cousin Gracie, a year older than her, would always come with her mothers, Auntie Andgie (Andrea Bruner, Aimees sister) and Auntie Jula (Julia Gonsalves). Before DIPG was a recognizable acronym to anyone in her family, Stella was being raised in a village. Since then, the village has grown even larger. Mornings start like this one, the Tuesday after a brilliantly hot Thanksgiving, when her Poppa arrives at 7 a.m. with a box of chocolate Timbits and a bag of bagels from Tim Hortons. He waits on the couch for his girls to wake up. Then he makes them toast and tea. Since Stellas diagnosis, its become his ritual of comfort. This morning, he waits 45 minutes before Stella appears on Mishis hip, wearing yellow flannel pyjamas and demanding television. She is followed by Auntie Heather, now eight months pregnant, who has come to check on my girl. Five minutes later, Aimees mother, Emery whom Stella calls Tutu arrives with a Bluetooth plugged into her ear and a bag of toilet paper. She has taken time

LEFT The family started a new holiday tradition, hosting a tree-trimming party. While Aimee and Mishi used to do this on their own, they are changing things up for Stella.

Stellas family is learning how to live with death, not wait for it
off work and plans to clean the house today. Then, Auntie Andgie steps into the room in her pyjamas. She slept over last night to handle Stellas 4 a.m. morphine dose, so her pregnant sister Aimee could sleep. Next, Warnick and her partner, Emily Hopkins, appear in the living room with their 1-year-old daughter, Tobin. The basement apartment was renovated to accommodate them, and they moved in a couple of weeks ago. Hopkins is a pediatric oncology nurse and is here to help with Stellas medications as they get more complicated. Warnick is here to ease Mishi and Aimees anxiety around Stellas death. One of Warnicks regular talking points is how isolating death is in North America. Weve outsourced it to funeral homes, so we arent comfortable around it anymore. Rather than risk saying something awkward, we switch aisles in a supermarket to avoid a grieving mother. Thats not the case in Stellas house. Here, grief is a dish generously shared, like love. By the time Aimee emerges, eight people are settled around Stella, sipping tea and eating toast. If we won the lottery, obscenely, this is what wed do, says Aimee. Fortunately, money has not been an issue. Mishi started a blog about Stella and the familys dark journey. Between readers sending them money and three fundraisers friends and neighbours have hosted, theyve so far raised $26,000 so that they can afford to stay home. Other unexpected gifts from strangers keep arriving: offers of free family photo shoots, tickets to Canadas Wonderland, hand-knit blankets and framed portraits of their daughter. They are not alone in their grief. But Stellas diagnosis has stripped them of the banalities of play dates and errands that gauze most parents days. Their fear has reduced them to their naked selves. And they are very different people. They met at a group home they both worked at Mishi as an administrator, Aimee as a social worker. They tumbled into love and were married six years ago in Tutus backyard. They both wore long white wedding gowns. At her core, Mishi is a cerebral introvert. Shes always suffered from that feeling of not quite fitting in. Shes never been good at small talk. But now, she finds even questions like How are you? unbearable. She calls herself a control freak. She needs to know everything about DIPG, and spends hours reading about it on the Internet. She is frustrated by the uncertainty of Stellas decline. Aimee, by contrast, is a camp counsellor. She loves people and chaos. She doesnt analyze. She sinks into the present and can ignore tomorrow. Since the diagnosis, she hasnt done a single Internet search on DIPG. Those differences crystallize around the birth of their second child, a boy whom Stella has named Sam. He is due in 11days. While Mishi gave birth to Stella, Aimee is carrying Sam. Both children were made with sperm from the same donor. The uncertainty of his arrival pushes Mishis anxiety to a new level. Will Stella be dead by the time he arrives? What if they miss one another by a single day? Mishi cant cope with two unpredictables. She wants Aimee to be induced a week early. Aimee feels their children already have a relationship. Stella talks to Sam and touches him through Aimees skin. She wants to go into labour naturally, and half of medically induced labours end in Caesarian sections. She worries that after a C-section, she wont be able to

hold Stella or Sam. The couple compromises. Sam will be induced three days early. The irony: while the family has chosen a natural death, they will have a very medicalized birth. This Tuesday morning, they have an appointment with their midwife. Stella comes with them at the last minute, her bare feet hanging down from Mishis front carrier. For most of the appointment, Stella zones out, her mouth hanging open, her eyes half-closed behind a pair of purple sunglasses. But when midwife Christie Kavaratzis runs her hands over Aimees swollen belly to check Sams position, Stella snaps to attention. Naaahhh . . . Top . . . Please . . . dan . . . hurt . . . Mommy, she says. I . . . dont . . . like . . . her . . . pushing . . . Sam. Sam looks fine. So the discussion, as it always does, refocuses on Stella. Im so nervous I wont be able to be there for the birth, Mishi says. On a day like yesterday, I wouldnt be able to do anything. Well get you there, Aimee reassures her. Kavaratzis has become part of Stellas village. She regularly drops by impromptu. She worries about them daily. Three years ago, at five months pregnant, she suffered a gruesome miscarriage. The tragedy, she says, rocked her marriage. She is awestruck by Aimee and Mishis strength and their love for one another. As a midwife, Kavaratzis normally advocates as little medical intervention as possible. But this is not a normal birth. She supports Aimee and Mishis decision to induce early, but warns them that nature sometimes cant be tricked. Your body might not let you go through with labour in this very stressful situation, she says. Part of labour is letting go, releasing and relaxing. Stella rouses again for the familys exit. She cradles her shaky arms around herself and smacks her lips together for Kavaratzis. Thats her newest trademark move: a hug and a kiss. That the old Stella would never have kissed or hugged anyone makes it all the more heartbreaking. After the family has gone, Kavaratzis walks back into her office, sits downs and worries some more. I hope they are okay, she says. I hope they survive this. SAM ARRIVES nine mornings later during a huge fall thunderstorm that

ABOVE Stella meets her baby brother at Toronto East General Hospital. She has named him Sam.

smashes electrical wires and trees around town including a large branch of Stellas crabapple tree. When his heart rate plummets for three long minutes, Sam is going to be dug out by scalpel. In the end, he emerges the old-fashioned way, and is greeted by two crying mothers and a room bursting with relatives. Mishi is there for most of the labour, but suffers a panic attack after his birth and rushes home in tears. Incredibly, Aunt Heathers contractions started the same night and shes still in labour on the same hospital floor, just two doors down. Stella stayed at home with Auntie Jula. The next morning, Julia calls to announce that she is walking with Stella to the hospital. The room goes quiet. It feels like a church, waiting for the bride. I never really thought they would meet, says Aimee. When she arrives, Stella doesnt look sick. Her face is bright. Her hair is luminous. Her blue eyes sparkle. She smiles widely. She wants to hold her baby brother. Her hands shake and she reaches down to hug him. Youre such a good big sister, Aimee says. I have two babies, right? Later that afternoon, Mishi is back at the hospital for Heathers birth. She huddles in the hall by a window with her mother, brother and Tutu. They run their hands over her back, shoulders and hair. I had convinced myself I was really okay with this, Mishi sobs. Im not okay. When I came home from the hospital, she smiled at me and I just wanted to die. How will I watch one child decline into death and try to love another child? Sams birth has shot her back to the moment of Stellas diagnosis. Grief grips her body. She describes it like this: a stabbing in her chest; freezing-cold extremities; weak arms and legs; a muscular, mucous ball in her throat. I feel like screaming in the night, Dont you know how special she is? How can you take her away from me? she says. I want to walk off a bridge. Thats how I felt in the first two weeks. Im shocked that Im back here. A MONTH PASSES since Sams birth. Its November. The crabapple tree is naked, awaiting winter. Despite all predictions, Stella is still here. The family had another scare last week.

Stellas morphine dose was upped again to combat her headaches. She slept almost straight through the next four days. Her colour went grey. The family went into vigil mode. Stellas Nanny Sandy cancelled a trip to Las Vegas. Then, on day five, Stellas light flicked back on. She woke up, smiled, came to the dinner table and ate barbecued steak. Two days later, shes back on the couch, either sleeping or like this: eyes wide but rolling. She opens and closes her mouth silently, like a fish. She can still speak, but barely. Her words arrive in a whisper, 10 painful seconds apart. Just this past summer, Stella was stringing new words together in longer and longer sentences. Now, the tumour is snatching them from her by strangling the nerve that controls her vocal cords. She is wearing a pair of new, pink Dora pyjamas to fit her lengthening frame. Stella might be dying, but she is still growing. Mishi is exhausted. She paced herself for three dreadful months. Stella has lived five months now, and the worst is still coming. You never wish your child dead, Mishi says. But you wish it is over. You cant move forwards or backwards. Mishi is stuck in deaths waiting room. Her face is wet with tears as she describes the past week to Dr. Kevin Bezanson, Stellas palliative care doctor. It sounds like there are still moments of goodness, although they are fewer and further apart, Bezanson says from the loveseat across from Stellas couch. He cycles here every week and carries his stethoscope and laptop in a pannier adorned with an I am a pinko cyclist button. He starts every visit by playing with Stella. You really have to hold on to those moments. Regular doctors speak the language of cures. Bezanson talks about quality of life. His aim is to help Stella and her family enjoy their last days together. That sometimes means morphine. But it also means regular doses of philosophy. Stella doesnt seem to be in pain when she is asleep. Shes comfortable in her mothers arms. And when she is alert, she is happy. She still has life. Her family now has to learn to live it with her, in spurts. They also have to learn how to live with death, not wait for it. Instead of focusing on the language Stella has lost, she can work with what

she still has yes and no. Youd be amazed at how much information you can get out of yes and no, says Bezanson, 40. As I said to you in the very beginning, I cant promise this isnt going to be hard. If Stellas condition changes over months, Bezanson says, she has months to live. If she deteriorates by the week, she has weeks left. If she changes by the day, her death is imminent. Thats deaths general road map. But Stellas condition is rare, and her familys decision against radiation even more so. Then, there is her fiery personality. She was unmappable in health, perhaps she will be unmappable in death. Will she be here for Christmas, Mishi demands. I dont know, Bezanson says. I dont know either, Mishi says. FROM THE OUTSIDE, Stellas bungalow looks like a happy, wrapped Christmas package on this chilly December night. Through the fogged-up leadpaned windows, the Christmas tree lights glow and dance. You can see shadows of family and friends, all bustling around. Inside, the atmosphere is bursting with joy. Brad Needham, a friend of the family from Kitchener, is playing his guitar in the corner while his roast cooks in the oven over root vegetables, infusing the room with the smell of rosemary and red wine. He stomps his pink croc in time to the beat of Stellas newest favourite song an adaptation of Oh! Susanna that goes: Gracie, Sam and Stella, dont you cry for me/I come from Alabama with a guitar on my knee. Gracie is Stellas cousin and best friend. She is 3 a year older than Stella. But today, given Stellas condition, she seems 10 years older. She pogos in the middle of the floor. Sam, now 2 months, bounces on Mishis lap on the couch. Our little girl dances in Aimees lap in her own way shaking her head from side to side in time with the beat. She is wearing a dress covered in red poppies. Her symptoms are more or less the same, but the house is different. Her mothers Mishi in particular have changed. Mishi has been out shopping in the Distillery District with Sam, leaving Stella at home. Two days ago, the family went to buy its first-ever live Christmas tree, a balsam fir, which Stella

STELLA, THE EBOOK

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

touched and smelled with them. Tonight, theyre hosting an ornamenthanging party. Time is an amazing thing it gallops along predictably and does unpredictable things. In this case, it has slowly bonded Mishi to Sam and inured her to Stellas death, one cold step at a time. Ive come to a place of acceptance, she says. I cant stop living, spending 24 hours on the couch, because I lose who I am. One day Stella will be gone and Ill be still here. I feel more like myself when Im out doing stuff. I thought Id be incapable of celebrating Christmas here. Im surprised. Im still finding joy in it. Instead of seeing each day as the possible day of Stellas death, she has started to see each one as a possible day of Stellas life. Her latest mantra is, Not right now. As a clear sign of the transformation, Warnick and Hopkins have moved back to their own apartment. Their help might still be needed, but not right now. Stella looks like an antique doll, her eyes wide and unblinking, her skin pale. Aimee carries her over to the dining room table, which is covered with ornaments. There is a star with her chubby baby photo in it from her first Christmas, and a new ornament, featuring four stockings over a fireplace. Which one do you want to put up? Aimee asks her, picking up a little ceramic Starbucks coffee cup. Mommys coffee? Stella holds it with a shaky hand and brings it to her mouth, pretending to drink. While Aimee hangs the ornament, Gracie clambers up on the arms of the couch and quickly hangs another. Looking at them together, you think: life is so random, life is so unfair, embrace lifes gifts now because it might break you tomorrow. The third song Needham sings is Wavin Flag by Knaan. While Gracie bounces in the middle of the room, Stella waves her right hand over her head from side to side from Aimees lap. Her fingers are so stiff, they seem to bend backward, double-jointed. Everyone else follows suit, waving their hands in the air, exhilarated to see Stella engaged. They are here for Stella. They are here for each other. The two have become intertwined.
Catherine Porter can be reached at cporter@thestar.ca