Elliot’s family invite us into their homes again to see how she’s doing one year on from chemotherapy. Photos by Danny Rood. Words by Emily Writes.
This is the second part in a series on Elliot. Read part one here.
Caroline, Lina to her friends, heard a scream first. It was pouring with rain and she was in her socks. She ran up the wet and muddy path to see her husband on the ground with their daughter Elliot.
Elliot was nursing a small bump, Jarrod, her husband had ripped his knee open and blood was streaming down his leg and soaking his jeans. Attempting to lift Elliot, now 35kg at almost three-years-old, Lina fell too – fracturing her toe in the process.
Elliot has a brain tumour.
Elliot’s tumour is a glioma, specifically a pilocytic astrocytoma. A slow-growing but inoperable tumour. She has a reinforced pram that acts as a wheelchair but that’s no use on the stairs that lead to their house in a valley in suburban Wellington. She can now walk, a new development, but she’s very unsteady on her feet. Her weight is attributed to hypothalamic obesity but that’s not the only challenge she faces in getting around. A new drug she is on is possibly making her dizzy, and she’s weaker on her right side. She just can’t walk well and move easily, her mum says. “She can’t run around like other kids her age. The level of stimulation she gets is just very small. And that’s really hard.”
She has a zimmer frame or trolley for flat surfaces, “but she’s not a big fan of it,” Lina says. “She also topples easily so that’s scary for her.”
Jarrod and Lina have looked at options for making their home safer for Elliot. A cable car has been suggested – but it would cost something like ten times more than the maximum support allowance for any access modifications. Moving house would mean moving further away from the hospital. Their daughter Lydia also loves her school. At the moment they’re just working on making their home dry and warm enough for Elliot’s health. Nothing feels very easy right now.
Elliot loves the vacuum cleaner, she loves potato chips and peanut butter and she really loves a plain bun.
Her favourite songs at the moment are Justin Beiber’s ‘Sorry’ covered by Postmodern Jukebox, and ‘Happy’ by Pharrell Williams, though she’s also partial to Baby Shark as most little ones are. She loves Anika Moa songs and requests them through Siri whenever she can.
She has a sweet head of golden ringlets. Her hair used to be straight; the drug she is currently on to treat her cancer has turned her locks into tight little corkscrews giving her the appearance of a cherub.
Elliot has had cancer for almost all of her life. In January she will be three. We last heard from her family a year ago.
She was beginning an experimental drug that targets the BRAF mutation in the genes in the tumour directly. A drug that is being paid for by everyone who pays tax. Socialised medicine was the knight in shining armour for the family.
But the knight didn’t quite beat Elliot’s dragon.
On 6 August, 2016 Elliot had her first chemotherapy session. She had 52 weeks of chemotherapy, which did not work in the way they’d hoped. Targeted gene therapy was next.
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 chiasm, the thalamus and the hypothalamus (control centre for appetite, temperature, hormone regulation).
Elliot is crying as I talk to Lina. She wants to go to the shops for “just two chippies”. Since she ended her chemotherapy she has begun to be able to communicate verbally – to the delight of us all. She’s no longer has the dazed gaze she once did. “Since she’s been off the chemo her energy levels have increased. She is also sleeping better, eating better, her language and communication is so good. She’s not so chemo’d out anymore, constantly exhausted and nauseated from the medications”.
But life is still hard for the Baker-Beeches. Lina began a new job about five months ago and her husband Jarrod became Elliot’s primary carer at home. Elliot hasn’t yet started at an ECE as until now her mobility and stamina weren’t up to it – and many cannot meet her access needs anyway.
The risk of illness is high. She still can’t be fully immunised due to the risk of live vaccinations. “We’re continuing to look for an ECE,” Jarrod says. “We have to ask questions about vaccination rates and walk through what it might be like to have her in the centre. Some say they have 90% (vaccinated) but that isn’t herd immunity. I don’t think people get it,” he says.
“Any other kid if they cracked a fever you’d give them some Pamol and they’d be fine but we end up in hospital.”
Every Matariki the family lights lanterns on the beach and celebrates the coming of the new year with friends. This year Elliot had a fever and was in hospital. She missed the fireworks, the lanterns, and the celebrations.
She has a session with a neurodevelopmental therapist every two weeks, and weekly swim therapy and music therapy. This is on top of regular appointments with her oncologist, ophthalmologist, endocrinologist and dietician. Every three months she has an MRI under general anaesthetic to check her tumour’s growth. Her next scan is not until March, the biggest gap she’s had between scans since she was born.
Despite weighing as much as a ten-year-old on a nearly three-year-old’s small frame, she has a fighting spirit and resilience that keeps everyone around her going.
“She knows where she wants to go. You have to convince her if you want her to go somewhere else. She knows her mind. She’s just so resilient and she has this unlimited love and affection for others,” Lina says. Jarrod agrees. “Like a lot of kids who are chronically ill she’s really good at engaging with adults – much better than she is at engaging with other children.”
Despite everything the family has been through, they remain as tight as ever, and Elliot is the beating heart of their loving and close whānau, and a fierce defender of her big sister Lydia.
“She’s just so sweet and so lovely,” Lina says. “She just beams and those eyes just cut right through you, nothing can compete with it and she knows she’s fucking funny.”
Her sister Lydia, six, is her best friend. Along with her cousins and Lydia, Elliot has a small social circle. Flu or measles or other preventable diseases could hospitalise her. She must be well to cope with the concoction of drugs she is on. Jarrod suggests on Facebook that people buy vaccinations as Christmas presents. They are a family advocating daily for their child, and it can be an exhausting job.
A year on, much has changed. “The happiness she had that was trying to get through when she was on chemo can now get through.” But there are still challenges that can seem overwhelming.
Elliot comes over for a playdate with my son and she lifts up her top to reveal angry red itchy welts on her back. Lina explains they are a side effect of one of the medications she is on. They’re larger than mosquito bites and they cover her whole back. Still she happily plays trucks and beams at her friend.
Finding a community is still a hope for Elliot and her family. She has friends, but life is different when you have a sick child. Jarrod is part of an at-home dads group, but Elliot is not able to move freely like other children her age so that limits her. “After music class the mums will invite me to coffee but it’s quite an ordeal because her mobility is so limited. If I can even get her chair in, she has to be given low GI foods. She’s hungry all the time but there might not be anything at the cafe she can eat,” Jarrod says.
“People stare at her because she’s obviously different. I’ve had someone ask about her push chair because they noticed it was more heavy-duty. She gets tired easily; she used to not have stamina for activities but she’s getting better now that she’s more settled into her new medication regime.”
The family cope with negative reactions about Elliot’s weight. Jarrod says he thinks a lot about his ability to move through the world easily.
“For people who have never issues with weight, you need to unpack all the weird societal stuff we have about size and obesity. All of the negative reactions to her, they’re related to her weight. When you look at anyone’s size you have no idea what’s going on and it’s none of your business. The challenge is trying to unlearn all the negative stuff and encourage others to unlearn it.”
Elliot continues to beat the odds.
Her smile continues to light up rooms and what’s next for her and her mean tumour ‘Eugene’ is unknown.
What is known is that she is a dearly loved child, whose every milestone is celebrated by her loving whānau and friends.
A little girl, with a brave spirit, who loves a good bun.
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