Back-to-school time is bittersweet for every mom, but for few moreso than Renae Newmiller. Renae is the mother of Ella, who turned 5 last spring the same week she was diagnosed with an inoperable brain stem tumor. But the tumor is hardly all there is to Ella.

She knows she’s sick, but she also know she likes to dress up and do her hair. She’s a ham who engineers her own choreography, lip-syncs and acts goofy at the dinner table. She can roll her eyes to rival the most insufferable teenager. She’s played soccer and taken dance, though her balance means those activities are on hold for now. She can still swim, though, and she’s crazy about playdates.

Oh – and her favorite color is usually pink.

The last week of August, Newmiller watched as Ella shouldered her new backpack with pink polka dots and grabbed her new lunchbox – pink with a pony – and joined the Class of 2022.

At 5:30 that morning, an excited Ella awakened her mother. “Mommy, get up! It’s my first day of school.”

When she dispatched her son, Jack, to kindergarten several years ago, Newmiller cried the requisite tears. This time around, it was different.

“The fears I have are not the typical sending-a-kindergartener-off-to-school worries,” she said last week. “I am so happy she is at school. Every day she goes and the phone doesn’t ring saying something is wrong, I’m thankful.”

The Newmillers spent much of the summer in Arizona where Ella received intravenous supplements, an attempt at exploring alternative treatments. There were four children at the clinic with Ella’s diagnosis; two have since died, one while the Newmillers were still there and one the week they returned to Raleigh. Like Ella, the other child returned home to figure out what to do next.

On Ella’s good days, her mother can pretend nothing’s wrong with her little girl. On bad days, when Ella can’t keep from drooling, reality is harder to ignore.

“Sometimes it doesn’t seem like it’s real,” Newmiller said.

Last week, an MRI showed that Ella’s tumor has grown 10 percent.

Since the beginning of their ordeal, the family has relied upon prayer and it has come from friends and relatives and people who have never even met the Newmillers, like a woman named Ashley Dasch, who wrote online, “I don't even know your family but I am praying for your sweet girl.”

Faith and hope kick in when conventional medicine has little to offer.

Not that the Newmillers are giving up.

They are experimenting with homeopathic remedies and limiting Ella’s sugar intake, which meant that Ella licked coconut milk ice cream containing less sugar than the traditional ice cream her classmates ate to celebrate a recent birthday.

They have not ruled out radiation, though in most cases it buys but a few months and can have side effects that could sideline an ebullient 5-year-old.

Making decisions is hard because there’s no known cure, and what seems to work for one child doesn’t work for another.

Ella’s tumor – a diffuse intrinsic pontine glioma -- is interwoven with her brain stem and surrounds parts that control speech and vision. It’s not a mass that can be excised; it’s more like an exercise in picking individual grains of sand from a patch of grass.
Ella’s illness leaves her parents feeling frustrated and sad and often overwhelmed.

But Ella just forges ahead.

She wasn’t nervous at all about starting school. Where other children had three months to worry and wonder about kindergarten, Ella spent much of the summer preoccupied with her treatments.

“When we played, all we played was doctor,” her mother said.

Later this month, the Newmillers have a trip to New York planned. Not to see doctors but to see dolls, and lots of them.

Local real estate software company SoftPro Corp. has adopted Ella as this year’s charity project. They’re paying to send the Newmillers to the American Girl Place on Fifth Avenue. The company is picking up the tab for travel and hotel and a Broadway show and, ostensibly, something for Jack and his dad to do while Ella and her mom are oohing and aahing over Kit Kittredge and her ilk.

It’s a pretty safe bet that Ella will be wearing pink that day.

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To help, go to www.ellasmiracle.com.

Bonnie appears every Monday on TriangleMom2Mom.