The brief and beautiful life of Stella Joy
December 17, 2012 10:26 AM   Subscribe

The Toronto Star has recently published a three-part story (1, 2, 3) on the life and death of toddler Stella Joy, who was diagnosed with diffuse intrinsic pontine glioma (DIPG) at age 2. As this disease is considered 100% fatal, Stella's mothers (link to blog) chose not to have Stella undergo radiation treatment in order to preserve as much quality of life as possible. The love of Stella's family and community as they support her and each other through her death is truly inspiring.

Stella Joy Bruner-Methven died on October 22, 2012, surrounded by those she loved.

An eBook on this story has been released by the Star, and an excerpt is available there.
posted by fiercecupcake (13 comments total) 5 users marked this as a favorite
And thanks and hat tip to ThatCanadianGirl for mentioning this story in AskMe this week.
posted by fiercecupcake at 10:28 AM on December 17, 2012 [2 favorites]

Ouch. That was quite touching.

posted by Talkie Toaster at 11:06 AM on December 17, 2012

I remain struck by the incredibly sane and compassionate approach Stella's mothers took to her death, and upon checking her site, I see that they've since been able to go on a lovely vacation.

It seems to me that letting yourself enjoy something so wholly indulgent after enduring such unremitting pain and hardship is a very healthy thing to do, yet one a lot of people would find difficult.

Stella had good parents.

posted by Sokka shot first at 11:12 AM on December 17, 2012 [4 favorites]

Wow, I made it just past the headline. *sniff*
posted by mkb at 11:20 AM on December 17, 2012

The only other symptom of DIPG: regular laughter while asleep.

That was a surprisingly heartbreaking line. What an awful disease.

posted by sawdustbear at 11:40 AM on December 17, 2012 [2 favorites]

Such an overwhelming sad story about a beautiful little girl. I am blinking away tears at my desk.

Also, I can't help but think how much less stressful this must have been with Canadian healthcare available to Stella and her family.
posted by computech_apolloniajames at 12:10 PM on December 17, 2012 [2 favorites]

"Warnick is passionate about death the way many people are passionate about hockey." This sentence makes me so homesick I can't even stand it.
posted by Tesseractive at 12:40 PM on December 17, 2012

So sad, but ultimately so lovely and uplifting. Thanks for posting this.
posted by SweetTeaAndABiscuit at 1:33 PM on December 17, 2012

I can't help but think how much less stressful this must have been with Canadian healthcare available to Stella and her family.

I almost laughed out loud when I realized I was reading the article with American dread. How humane, that money raised for the family went so they could take leave from work and be home all day with their daughter, and to buy a larger car to transport Stella and her brothers, rather than so they could continue to work full-time but maybe not lose their home and car (and jobs, eventually, for absenteeism).
posted by Lyn Never at 3:37 PM on December 17, 2012 [8 favorites]

Wow. I never thought I'd see a story about DIPG on the blue.

I'm a (former) pediatric neuro-oncologist and I know Ute Bartels and many of the folks at Sick Kids. Great hospital, by the way.

Everything that this article says about DIPG is true. Of all the pediatric brain tumors, this one is the worst motherfucker out there. The. Worst. I could easily talk parents through most any brain tumor without losing it. DIPG ... not so much.

One of the things that makes DIPG so infuriating, and a point that the article did a nice job of covering, is that animal models don't exist, and getting sufficient viable tumor tissue from patients to be able to do high-resolution molecular dissection (e.g., next generation sequencing) is hard to do. Not impossible, but hard. And the challenge is, of course, that until very recently, the data you'd get on a child's tumor would be unlikely to benefit that particular child owing to the slow progress of science and the very rapid growth of these tumors.

There was an meeting at the FDA a few years back - a sessions of the pediatric subcommittee of the Oncology Drug Advisory Committee - to discuss a specific proposal from an investigator at University of Colorado who wanted to run a biopsy study of this horrible disease (meeting minutes here, and nicely covered here). Interestingly, despite the dismal prognosis, the vote was split on the "greater good" question - that is, whether or not we should subject some children now to a non-therapeutic, potentially dangerous biopsy, to learn enough about the disease to be able to treat children in the future.

I'd hope that given the remarkable advances in sequencing over the past 3 years, including the small amount of material needed to generate a lote of data, that this point could be revisited. I know that the Colorado study never got started, but that in 2011 a study run by my former mentor and boss did, in fact, get launched.

Thanks for posting this terrific article. It brought back all of my fears, both as a doctor and a parent.
posted by scblackman at 3:43 PM on December 17, 2012 [10 favorites]

Jesus Christ, that diagnosis. As if cancer wasn't enough of a monster as it is.

I'm in awe of the grace with which everyone in the family seems to have handled a nightmarish situation. Most striking, I thought, was the part in the second story, after Stella couldn't walk or speak anymore - that it wasn't even clear to her that anything was really wrong, because she'd already spent more than half her life unable to walk or talk. Of course her body worked differently from one day to another. That's how life works at that age.

Heartbreaking. And yet inspiring. Wow.
posted by Holy Zarquon's Singing Fish at 5:03 PM on December 17, 2012 [1 favorite]

This is so inspiring, and so utterly devastating - even to a bystander, like myself. I can't imagine their pain and I can only barely imagine the path they took to achieve such grace in the face of all those terrible unknowns clashing against the one absolute certainty that at any time, their daughter was going to die.

I read the Star piece and devoured their blog and checked my babies every 45 minutes, all night long. I didn't sleep much last night. I'm grateful you posted this.
posted by annathea at 8:03 AM on December 18, 2012

As I was reading the third piece I was thinking of the neighbours of Stella. I was imagining them looking out their front windows the night she died and seeing people lining up candles out the front door and down the steps and down the walkway to the drive. And then they all line up holding candles and a big limo pulls up. I mean the overwhelming emotion of just seeing that and realizing what it was. The heartbreaking beauty of that scene. The love. My god.
posted by ThatCanadianGirl at 1:19 PM on December 18, 2012

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