Butterfly Eventually, Princess Actually
She’s dead, Twitter tells me.
I never met Sofia Flores, a 2-year-old girl battling — as much as little 2-year-old girls can battle — for her life just months after it began. Doctors diagnosed the toddler with juvenile myelomonocytic leukemia in the summer of 2013, then reclassified her condition as acute myeloid leukemia in autumn. Both are difficult-to-spell, more-difficult-to-say medical terms that boil down to this: the afflicted is completely fucked.
A local marrow drive tipped me off to Sofia’s predicament, and in January, I spoke with her mother, Erica Westfall, for a PSA-style article in the Pasadena Outlook newspaper. Alternately desperate and vexed, Westfall told me her only child faced long odds: Sofia needed a Hispanic-Caucasian bone marrow donor, and only 4% of the national registry were of a mixed race. That category included all types of mixed races. Whatever slice of that sliver happened to be Hispanic-Caucasian contained Sofia’s only hope.
And so Sofia waited. Mostly, she waited in a hospital. A disease with intentions to cut her life short also stole from her the opportunity to enjoy what little time she did possess. Birthday? Not in a park or the ballpit at Chuck E. Cheese. Halloween? Not collecting her neighbor’s sugary stash from within a princess get-up. Christmas? Nowhere near a chimney Santa might shimmy down.
Her mother and marrow agency representative told me Sofia still managed to smile through a bad situation. Of course, she didn’t know any other type of situation. She may have figured all little children spent their first years in hospitals more than homes, connected to tubes and things that beeped. Maybe all children, if they felt up to it, tip-toed down brightly lit, white-walled hallways full of strangers. I never spoke to Sofia, so I wonder if she thought all of this — her aches and her pains, and the way Mommy and Daddy seemed to be so sad so often — was just the way things were supposed to be.
As leukemic cells overtook her frail body, Sofia injected her world with color. Some manners of hospital life delighted her, especially her royal court of nurses. If she beckoned, nurses arrived, and if Sofia desired to parade through the hallways wearing butterfly wings, a nurse happily strapped on her own pair. When Sofia turned 2, the party came to her room: a shot of medicine for the birthday girl, shots of apple cider for her nurse entourage.
The curious girl learned, too: animals, numbers and big words such as “eventually” and “actually.” There were more words, words that 2-year-olds shouldn’t put into phrases, because those phrases gut a parent who must hear them: “No more chemo,” Sofia pleaded to her mother.
What you’re reading, as you might have guessed, is an outsider’s perspective on someone’s very real nightmare. I did not speak with Erica Westfall or Sofia’s father, Ignacio Flores, before publishing this account, and it’s important to note that I do not speak on their behalf here. Also, my newspaper will not be giving me the go-ahead to follow up, so here ends any form of journalism or reporting.
As just one of the several reporters who spoke with Erica Westfall nearly a year ago, I’m certain she does not remember our brief phone conversation. I’m also not sure how she would feel about me publicly (under)reporting about her daughter’s short life.
At surface level, I’m justifying this account on the presence of how public the family made Sofia’s story: local television news interviews, personal testimonials on bone marrow registry websites, and photos of her on social media accounts.
Which is how I found out Sofia Flores died.
That’s it.
For months, I’d been trying to get an update on Sofia without going straight to the source of information. Some reporter, huh? But without an official assignment, I didn’t want to cross the lines of bothering the family for my own need-to-know. You should call them, I think. The hell you will, I think next. Let them be. Let them be with their pain, and let them be without you.
And so I Googled her name every few weeks, followed the @TeamSofiaFlores account (which did not Tweet between March 31 and June 23) and mostly just wondered. On January 23 — also the date my article on Sofia was published — her father’s marrow was injected into Sofia through a haploidentical transplant. The procedure carried poor odds of success, making it something of a Hail Mary, but desperate times call for you-know-what.
I do not know how Sofia’s wrecked system reacted to the procedure, or what, if any, last steps the family took.
Today, the @TeamSofiaFlores account is dark. The most recent Tweet to its 152 followers was posted the day after Sofia died. Publicly, there’s nothing more to go on here.
Due to the nature of my job as a feature writer covering nonprofit organizations, I’m tasked with speaking to families in dire straits. Often, a loved one has been lost by the person I’m bugging for answers. And that crushes me, every time. The job demands me to write the story accurately while tugging at some heartstrings, then on the next.
But it stays with me. How could it not? There are plenty of reasons to write about Sofia – the injustice of dying young, a parent’s plea to the public for help. Hell, the photo of Sofia in her wings is enough reason to call for 2,400 words. Selfishly, though, I wanted to write because I wanted her family to know I haven’t forgotten her. That’s three “I’s” in a sentence about someone else. The personal investment is real, if not journalistically appropriate.
I need them to know that while this piece brings them no relief from waking up in a childless home where a precious child should be tucked into a Disney-themed down comforter, people don’t always forget, and people care.
We care, even those of us just calling on the phone to get a quick quote.
When Sofia’s mother told me about how her 2-year-old used the words “eventually” and “actually” in casual conversation, it impressed me. Seeing Sofia’s smile while connected to tubes carrying ammunition to wage a war against evil inside her tiny body? The smile amazed me, the tubes angered me. And staring at a photo of a butterfly princess holding hands with a butterfly princess nurse trying to save her? It crushes me. It crushed me when she was alive, and crushes me when I see it today.
And that’s why, today, coming across a photo of a butterfly princess, I wrote about Sofia Flores. I’m sorry if we let you down, little girl, and I’m sorry we lost you.
Register for the National Bone Marrow Registry by clicking here.
