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Copyright: Danny Rood
Copyright: Danny Rood

ParentsSeptember 18, 2017

Elliot has a brain tumour

Copyright: Danny Rood
Copyright: Danny Rood

Inside the oncology day ward at Wellington Children’s Hospital, a little girl has her final round of chemotherapy. Her family allowed The Spinoff Parents to come to the session and share some of their story with readers. Photos by Danny Rood. Words by Emily Writes.

Elliot Maria Win Beech loves kiwifruit so much she eats it with the skin on. She loves it when her mama sings her ‘Baa Baa Black Sheep’. She loves her sister Lydia and she loves cheese. Elliot also has a brain tumour. She is 19 months old and has had chemotherapy for 12 of them.

Caroline Beech is married to Jarrod Baker. They met at a party. When Caroline laughs she tilts her head back and her whole body shakes. In hospital, holding her precious Elliot, her eyes shine from tears that never quite fall. She bites her lip often to stop herself letting go. Her friends love her dearly and they call her Lina.

It’s only when she gets into her car, at the end of one of Elliot’s twice-weekly hospital visits, that Caroline allows herself to cry. She hides her pain from her daughter who always has fresh fruit cut into triangles in her little treatment lunchbox.

Elliot with her favourite nurse Sara

Caroline puts on her glasses, turns on Beyoncé’s Lemonade, and drives to pick up her five year-old daughter from school.

Today was Elliot’s final chemotherapy session for this round. The future is unknown.

Elliot was born on Tuesday the 26th of January at 4.20pm. She had a full head of hair. “She was perfect,” Caroline says.

She was just three months old when Caroline noticed a shake in her right eye. She was referred to a GP by Plunket then an ophthalmologist by the GP, the ophthalmologist referred her to an MRI scan via Paediatrics, a paediatrician referred them to a neurologist. At five months old Elliot had her scan.

“You know something is wrong when afterward you’re taken to a tiny room and in that room is a social worker and a neurologist and the Head of Paediatric Oncology and the paediatrician on duty,” Caroline says.

“They said: ‘we found something. It’s a tumour’.”

The next step was for the tumour board at Christchurch Hospital to review Elliot’s scan. A second opinion was sought at Starship Hospital in Auckland. The Baker Beech whānau live in Wellington. Across the country specialists looked at brain scans of Elliot deciding on the next move.

Elliot, who giggles before you get to the “One step, two step” in ‘Round and Round the Garden’, was five months old.

Elliot was booked for a brain biopsy. Caroline and Jarrod named the tumour Eugene (a private joke referencing the villain from The X Files). They didn’t know where the tumour was located, how big it was, and what the treatment options were.

Elliot surrounded by her many Beads of Courage. She has 608 beads so far.

Elliot’s tumour is a glioma, specifically a pilocytic astrocytoma. A slow-growing but inoperable tumour.

Elliot, who loves cheese, was diagnosed with cancer after her brain biopsy. A week later a port-a-cath was inserted into the side of her chest to pump chemotherapy into her largest and strongest vein, just above her heart.

On 6 August she had her first chemotherapy session. She cut a tooth the night before. Caroline keeps a diary of Elliot’s treatment. It reads from that night: “It was rough… The Rio 2016 Olympics have started… Terrible day and night… vomiting, generally miserable.”

On 8 August The Baker Beeches learned about neutropenia and what this means for Elliot. The diary says: “We have hand sanitiser everywhere.” The isolation of the family began. Elliot vomited every day and is now on anti-nausea medication.

“This isn’t the life I thought I’d have,” Caroline says quietly as we drive away from the hospital. “I loved working. I have this fantasy that I’ll have a job again one day, a career, and I’ll come home and kick my heels off, Jarrod will have a beer for me and he’ll be a stay-at-home dad, which has always been his dream. Dinner will have been slow cooking for hours. Our kids will be happy,” she says, pushing away tears.

They are in limbo.

“This isn’t the life we thought we would have,” she says again. “But you just roll with it.”

She quickly follows with, “It’s fine,” shaking her head as she says it. “We are luckier than others.”

The biggest shock, Caroline says, wasn’t the tumour, though that of course was a terrible day. It was that the treatment for cancer isn’t just a few weeks long.

“Maybe I was naïve,” she says. “I didn’t think treatment would be a whole year and then more. Just clear it up with a round of chemo! It’ll get rid of it – like magic! – I thought. But no, they shrink it, scan it, take her off treatment, we wait, if it regrows – another year, until she’s 20 years old.”

And this is the most hoped for result. Because 52 weeks of chemotherapy has not worked in the way they thought it would work. “They’re trying targeted gene therapy now,” Caroline says.

“The tumour is across four areas of her brain – she would go blind if the cancer was left unchecked as it is around the optic nerve, the optic chaism, the thalamus and the hypothalamus (control centre for appetite, temperature, hormone regulation). Her massive weight is attributed to hypothalamic obesity.”

Elliot has a reinforced pram that acts as a wheelchair. She cannot walk yet and she wants Caroline to carry her around, like any little bubba would. She weighs 20kg now. She loves to play peek-a-boo. Caroline has a bad back. The diary she keeps with her outlines every chemotherapy session, every MRI, every surgery, every general anaesthetic, every injection, every drug.

An entry reads: “A little nausea… slight temperature fluctuations, it’s my 35th birthday.”

Another entry outlines how a routine blood test turned into septicaemia. Bugs thought to be in her port on the side of her chest pushed through into her little body, giving her a septic shower. Elliot went from happy one minute, to inconsolable, refusing to feed, becoming grey and motley, vomiting, temperature spiking, becoming limp, sleepy and unresponsive five minutes later. She was crashing – one of the most terrifying things to watch. Thankfully they were still on the ward. They were admitted as inpatients for nine nights and ten days. They were released just before Christmas. On New Years Day she is admitted again with a temperature of 38.5 degrees. After four days of antibiotics they can go home.

Twenty two days later Elliot turns one. Caroline’s diary entry reads: “Happy birthday sweet little courageous darling child. We love you a thousand times.”

Elliot’s last round of chemotherapy is drawn out and long. Sessions are almost always different – sometimes they take hours, other times they take days. Elliot has her last chemotherapy for this round more than a year after her first session.

She is on an experimental drug now that targets the B-raf mutation in the genes in the tumour directly. A drug that is not funded in New Zealand yet, but is being paid for by everyone who pays tax. Socialised medicine is a wonderful thing, without which this family would be crippled.

“Taxes are brilliant,” Lina says with a smile. It’s one small bright side – that right now, in this moment, this family hasn’t been driven into poverty by the cost of treatment.

“If the drug she’s on doesn’t work, we’re back to square one. And we won’t know for another four to eight months if this is going to work.”

Caroline grips her steering wheel in the car after the last chemotherapy session.

“I’m exhausted.”

Through tears she says “this is just one type of treatment. It wasn’t the superhero but it was a solid worker. It was doing something but it wasn’t doing what we’d hoped it would do.”

“And now, the unknown,” she says. She looks so fragile, like she might break.

Elliot giggles from the backseat and Caroline quickly wipes away her tears. She turns around and smiles brightly at her beloved daughter.

“Mama’s here!” she says.

She’ll cry later. Right now, it’s all about her baby girl.

On October 10, Elliot will have her seventh MRI under general anaesthetic to track the size of her tumour. You can support Elliot and the Baker Beech family by donating to their Givealittle page.

Photos by Danny Rood. Words by Emily Writes.

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