Stella
By Catherine Porter
Meet Stella, an amazing toddler whose life – and death – brought together a community in love, laughter and grace. Stella’s parents welcomed Star journalist Catherine Porter into their lives at this shattering time to chronicle how one remarkable family and their community grappled with issues of deep concern to our society - the decisions we make around our living and our dying. Over the course of a year, family, friends and complete strangers worked together to give Stella a lifetime of experience. In doing so, they show us what is best about the human spirit. Poignant and life-affirming, Stella is a compelling read.
When you subscribe to Star Dispatches, you'll receive new eRead titles, for only $1/week. That's only $1 per week, with a minimum subscription period of 1 month, to explore news and features from a new and unique perspective. Single copies of Star Dispatches eReads can be purchased for $2.99 at starstore.ca or itunes.ca/stardispatches
By Catherine Porter
Meet Stella, an amazing toddler whose life – and death – brought together a community in love, laughter and grace. Stella’s parents welcomed Star journalist Catherine Porter into their lives at this shattering time to chronicle how one remarkable family and their community grappled with issues of deep concern to our society - the decisions we make around our living and our dying. Over the course of a year, family, friends and complete strangers worked together to give Stella a lifetime of experience. In doing so, they show us what is best about the human spirit. Poignant and life-affirming, Stella is a compelling read.
When you subscribe to Star Dispatches, you'll receive new eRead titles, for only $1/week. That's only $1 per week, with a minimum subscription period of 1 month, to explore news and features from a new and unique perspective. Single copies of Star Dispatches eReads can be purchased for $2.99 at starstore.ca or itunes.ca/stardispatches
Excerpt:
Stella
This book is about death.
But this is also a book about love and hope. It is a book about patience, acceptance and the surprising kindness of strangers. And it is a book about life — living fully and with abandon, in the way most of us aspire to live, but never manage.
This is a book about one special family that accepted death as an intrinsic part of living.
But mostly it is a book about a spirited, strong, funny little girl named Stella Joy Bruner-Methven.
I met Stella once before she was diagnosed with Diffuse Intrinsic Pontine Glioma. I can picture her coming down a sun-speckled park path toward me in a red stroller, her face a chubby, wide smile. I’ve wrung and wrung that memory, searching for something else of note, something auspicious or fragrant with premonition, something even remotely memorable. But there is nothing. She was just 1 year old then, and as much as I like kids, I rarely pay huge attention to the children of acquaintances, unless they are spectacularly brilliant or spectacularly horrid. Stella was in rare calm form that day.
I heard about Stella a lot, though. My sister Julia is a close friend of one of Stella’s two mothers, Aimee Bruner. They went to high school and university together and I’ve spent many late evenings chatting with Aimee over the years.
I knew from Julia that Stella was a true redhead: strong-willed and funny. Julia has a daughter Stella’s age named Ava, who is our family’s “spirited child.”
“You think Ava is hard to sleep train?” the refrain would go.
“You should meet Stella.”
“You think Ava is strong-willed?” By the Stella meter, Ava was meek.
Back then, Stella and I were separated by two degrees.
I remember the summer lunch two years ago when Julia told me about Stella’s horrific diagnosis. Stella, who had been seemingly totally healthy even when her parents took her to the hospital for what they thought was an inner ear infection, had a brain tumour and was going to die over the next three months, she said. The sentence thumped down noisily amid the plates of prosciutto and cheeses. The whole family stared at it, uncomprehending, aghast.
I’ve since read a book on DIPG, and can tell you that it’s a diffuse tumour that permeates the entire middle section of the brain stem, called the pons. When you look at a dissected pons, you can’t decipher the tumour from the rest — it all looks like cream plaster with some yellow (necrosis) and red spots (blood). The cancer cannot be cut out. You wouldn’t want to try to excise it either. Even today, doctors rarely biopsy DIPG because of its delicate location. The pons is the brain’s grand central station. All the nerves pass through it, carrying messages from the brain to the rest of the body. It’s also where the cranial nerves for breathing, swallowing and regulating the heartbeat originate. One wrong poke here, and you could instantly kill a child.
As DIPG creeps through the pons, it suffocates the nerves in its path. One day, Stella wouldn’t be able to walk, another she would no longer be able to hold up her head, then maybe talk or see, depending on which way it spread. But the tumour doesn’t affect the brain’s capacity to think. So, Stella would have a front-row seat to her losses.
DIPG is a sadistic torturer, I’ve learned. It only attacks children, mostly between the ages of 5 and 9. Doctors still don’t know much about how it starts or spreads, mostly because it is so rare (only 200 kids are diagnosed in the United States each year, and two to six in Toronto) and, until recently, was rarely autopsied, since doctors feared upsetting distraught parents. They have launched an arsenal of chemotherapy trials at it to no avail. The only mildly successful treatment discovered to date is focal radiation. In most cases —but not all — this stalls DIPG’s growth for a half-year, on average. But after that, the tumour relaunches its assault, and most children die within three months.
Julia told us that Stella’s parents, Aimee and her wife, Mishi Methven, had decided against radiation. Stella was so little and so wild, she’d have to be sedated every day for six weeks to get the radiation. That would make her miserable. Why put her through that, if she was going to die anyway? Instead, they wanted to pressure pack joy into those last three months. That seemed like a rational decision to me, although I’ve since discovered it was a first at The Hospital for Sick Children. Up till then, every other parent facing this evil predicament has taken the chance on more time. That is part of our ascribed jobs as Western parents — to fight for our kids to the very death. When I close my eyes and picture myself in their place, with one of my two young children given a death sentence, I don’t know what I’d do. I hope I’d have the courage to choose quality of life over quantity of life. But even if I did, I’m not sure I could live with myself afterward.
...
I had no idea what lay ahead. No one did.
What follows are excerpts from the journal I wrote documenting Stella’s surprising life and her remarkable death. I have edited them for repetition and variety, mostly picking scenes that do not appear elsewhere. I have chosen the more personal entries and so this journal does not include notes I took in meetings with doctors or experts.
The entries are episodic sketches of Stella and her family, but they also capture some of my reactions and reflections at the time. They are raw in the way only a journal can be, before I had a rearview mirror on Stella’s story to make sense of it all.
I have used the names Stella called her family members. So, grandmother Marilyn Emery is Tutu, grandfather Noel Methven is Poppa, aunts Julia Gonsalves and Andrea Bruner are Auntie Jula and Andgie. Stella called her two mothers Mommy (Aimee) and Momma (Mishi), but I’ve used their first names to avoid confusion.
Stella and her mothers arrived at Sick Kids at 6:30 on Friday, June 24, 2011. They left the following Monday night, vowing not to return unless absolutely necessary. They wanted their child’s last precious days to be filled with ice-cream breakfasts, birthday parties, trips to Riverdale Farm and family dinners at the cottage, not medical appointments. Besides, there was nothing the neurooncologistscould do for Stella.
DIPG kills 90 per cent of its victims within a year. Doctors figure the other 10 per cent were misdiagnosed.
But this is also a book about love and hope. It is a book about patience, acceptance and the surprising kindness of strangers. And it is a book about life — living fully and with abandon, in the way most of us aspire to live, but never manage.
This is a book about one special family that accepted death as an intrinsic part of living.
But mostly it is a book about a spirited, strong, funny little girl named Stella Joy Bruner-Methven.
I met Stella once before she was diagnosed with Diffuse Intrinsic Pontine Glioma. I can picture her coming down a sun-speckled park path toward me in a red stroller, her face a chubby, wide smile. I’ve wrung and wrung that memory, searching for something else of note, something auspicious or fragrant with premonition, something even remotely memorable. But there is nothing. She was just 1 year old then, and as much as I like kids, I rarely pay huge attention to the children of acquaintances, unless they are spectacularly brilliant or spectacularly horrid. Stella was in rare calm form that day.
I heard about Stella a lot, though. My sister Julia is a close friend of one of Stella’s two mothers, Aimee Bruner. They went to high school and university together and I’ve spent many late evenings chatting with Aimee over the years.
I knew from Julia that Stella was a true redhead: strong-willed and funny. Julia has a daughter Stella’s age named Ava, who is our family’s “spirited child.”
“You think Ava is hard to sleep train?” the refrain would go.
“You should meet Stella.”
“You think Ava is strong-willed?” By the Stella meter, Ava was meek.
Back then, Stella and I were separated by two degrees.
I remember the summer lunch two years ago when Julia told me about Stella’s horrific diagnosis. Stella, who had been seemingly totally healthy even when her parents took her to the hospital for what they thought was an inner ear infection, had a brain tumour and was going to die over the next three months, she said. The sentence thumped down noisily amid the plates of prosciutto and cheeses. The whole family stared at it, uncomprehending, aghast.
I’ve since read a book on DIPG, and can tell you that it’s a diffuse tumour that permeates the entire middle section of the brain stem, called the pons. When you look at a dissected pons, you can’t decipher the tumour from the rest — it all looks like cream plaster with some yellow (necrosis) and red spots (blood). The cancer cannot be cut out. You wouldn’t want to try to excise it either. Even today, doctors rarely biopsy DIPG because of its delicate location. The pons is the brain’s grand central station. All the nerves pass through it, carrying messages from the brain to the rest of the body. It’s also where the cranial nerves for breathing, swallowing and regulating the heartbeat originate. One wrong poke here, and you could instantly kill a child.
As DIPG creeps through the pons, it suffocates the nerves in its path. One day, Stella wouldn’t be able to walk, another she would no longer be able to hold up her head, then maybe talk or see, depending on which way it spread. But the tumour doesn’t affect the brain’s capacity to think. So, Stella would have a front-row seat to her losses.
DIPG is a sadistic torturer, I’ve learned. It only attacks children, mostly between the ages of 5 and 9. Doctors still don’t know much about how it starts or spreads, mostly because it is so rare (only 200 kids are diagnosed in the United States each year, and two to six in Toronto) and, until recently, was rarely autopsied, since doctors feared upsetting distraught parents. They have launched an arsenal of chemotherapy trials at it to no avail. The only mildly successful treatment discovered to date is focal radiation. In most cases —but not all — this stalls DIPG’s growth for a half-year, on average. But after that, the tumour relaunches its assault, and most children die within three months.
Julia told us that Stella’s parents, Aimee and her wife, Mishi Methven, had decided against radiation. Stella was so little and so wild, she’d have to be sedated every day for six weeks to get the radiation. That would make her miserable. Why put her through that, if she was going to die anyway? Instead, they wanted to pressure pack joy into those last three months. That seemed like a rational decision to me, although I’ve since discovered it was a first at The Hospital for Sick Children. Up till then, every other parent facing this evil predicament has taken the chance on more time. That is part of our ascribed jobs as Western parents — to fight for our kids to the very death. When I close my eyes and picture myself in their place, with one of my two young children given a death sentence, I don’t know what I’d do. I hope I’d have the courage to choose quality of life over quantity of life. But even if I did, I’m not sure I could live with myself afterward.
...
I had no idea what lay ahead. No one did.
What follows are excerpts from the journal I wrote documenting Stella’s surprising life and her remarkable death. I have edited them for repetition and variety, mostly picking scenes that do not appear elsewhere. I have chosen the more personal entries and so this journal does not include notes I took in meetings with doctors or experts.
The entries are episodic sketches of Stella and her family, but they also capture some of my reactions and reflections at the time. They are raw in the way only a journal can be, before I had a rearview mirror on Stella’s story to make sense of it all.
I have used the names Stella called her family members. So, grandmother Marilyn Emery is Tutu, grandfather Noel Methven is Poppa, aunts Julia Gonsalves and Andrea Bruner are Auntie Jula and Andgie. Stella called her two mothers Mommy (Aimee) and Momma (Mishi), but I’ve used their first names to avoid confusion.
Stella and her mothers arrived at Sick Kids at 6:30 on Friday, June 24, 2011. They left the following Monday night, vowing not to return unless absolutely necessary. They wanted their child’s last precious days to be filled with ice-cream breakfasts, birthday parties, trips to Riverdale Farm and family dinners at the cottage, not medical appointments. Besides, there was nothing the neurooncologistscould do for Stella.
DIPG kills 90 per cent of its victims within a year. Doctors figure the other 10 per cent were misdiagnosed.
