Lukas and Aubree

When Aubree was diagnosed with a rare childhood cancer, her whole family’s life changed. But with support from The Joshua Tree and Lifelites technology, she and her brother Lukas are rediscovering joy together.

Aubree Garrot laughs as she plays with sensory tech with her brother Lukas like any carefree eight-year-old.

But the joy on her face hides the pain that the courageous little girl has carried since being diagnosed with a rare form of cancer which sent her into early puberty at the age of five.

She is believed to be the only child of her age in the UK diagnosed with a Granulosa Tumour – which is a genetic cancer of the ovaries.

Mum, Clare, tells Aubree’s remarkable story.

A rare and life-changing diagnosis

Clare lives in Winsford, Cheshire, with husband Greg, Aubree and Lukas, 11. She told us how their nightmare started in 2023 when Aubree started getting stomach pain but they put it down to an appendicitis.

Clare said: “Lukas had previously suffered with his appendix and had it removed at the age of four, so I just put Aubree’s pain down to the same thing.

“Aubree had an MRI scan a week before Christmas and three doctors hovered over the scan, which immediately worried me. We were told it was either a tumour or a complex cyst on her ovary and she was referred to Alder Hey Children’s Hospital in Liverpool.

In between the appointment in January, I noticed some really worrying changes. She began to have periods, breast development, teenage mood swings and oily hair. 

“I went to the GP and they explained it was because of the tumour on the ovaries. Aubree’s hormone levels for her age should have been between 0 and 100 – they were over 3000.

“Aubree was due to have surgery in January and the week before her operation she couldn’t get out of bed because she was screaming in pain. 

“I took her to Alder Hey and doctors did an ultrasound but couldn’t see any organs because the tumour was so big. It had grown from 6 to 26 cms in three weeks and was sitting under her rib cage. She had to undergo emergency exploratory surgery as they feared the pain had been caused by the ovary twisting.

“During the seven-hour surgery, they had to go in through her pelvis to her rib cage to remove the tumour. It weighed two kilograms, which was 10 per cent of Aubree’s total bodyweight; that’s a lot for a little five-year-old to carry.

They also had to remove an ovary and one of her Fallopian tubes due to the cancer risk and take out a section of her abdominal wall and remove a section of her bladder and bowel.

“We got her tumour tested and discovered that 73 per cent of the tumour had the mutated TP53 gene which is why it had got so big and was so aggressive.

“It’s extremely rare and we don’t know of anyone in the UK of Aubree’s age that has this and now Liverpool Women’s Hospital are involved in her care.

“Aubree didn’t need further treatment as removal of the tumour was the cure. She is cancer-free, but there is a chance the tumour could come back in the next 20 years – so she will never ring the bell. She will require constant monitoring and blood tests to keep an eye on her hormone levels.”

Because Aubree had started puberty her ligaments grew bigger like a teenager, but her bones didn’t grow, so Aubrey’s ligaments are longer than her legs. 

Because her ligaments are longer than her bones they can become knotted, causing constant pain in her legs and making it difficult to play with friends. 

She also went into an early menopause after the operation once the ovary was removed – suffering hot flushes, very emotional and disrupted sleep.

Clare said: “She has undergone therapy at Alder Hey as she has struggled with the changes to her body, having to teach a five year-old how to use sanitary products is a lot and there are none to fit someone of her age, it was a very difficult time. She also still has the teenage mood swings as she also still has some of the hormones.”

“She got so fed up with having greasy hair and having to go through everything. It’s so hard to see your child go through something like this and not be able to do anything about it.

“She is still a child and still asks: ‘Why has this happened to me?’ because she doesn’t know anyone else who has this.”

The hidden impact on siblings

While Aubree was going through this trauma, her brother Lukas, who has autism and ADHD, also found it difficult.

Aubree, her brother Lukas and family have been supported by The Joshua Tree in Northwich, Cheshire, for over year. The Joshua Tree charity provides vital emotional, health and wellbeing support for families affected by childhood cancer, for however long they need it.

How Lifelites technology helped Lukas and Aubree reconnect

Whilst Aubree was accessing support, Lukas’s behaviour was becoming increasingly challenging for Clare and charity staff to manage. So, to further enhance the support they offer to families, The Joshua Tree applied to Lifelites for new tech equipment. The tech provided immediately engaged Lukas and he loved the different types of sensory and assistive technology. 

Clare said: “The tech arrived on the day that Lukas was coming back in, he was immediately engaged. He loved the iPads, Virtual Reality and he’s tech savy so he started helping others too and it also allowed him to socialise, it was amazing.

“Lukas has always been the first to ask Aubree what she needs or wants and the Lifelites tech has helped Lukas support his sister in new ways at The Joshua Tree, making her smile and laugh.

“Both Lifelites and The Joshua Tree has been a lifeline to our family and the tech has allowed us to enhance our use of the charity. Whenever we come here the children have so much fun.

Restoring confidence, play and family time

“Without Lifelites it would be challenging for us to attend The Joshua Tree session. 

“It’s allowed my family to go to events there so Aubree can be a little girl and not the poorly girl. The difference in her confidence has been immense and to see the joy on her face as she and Lukas play together is priceless.

“Just having the tech there I know I can relax when I get there, I get to talk to adults and not just be a medical mum or SEN mum. It’s been vital for us.”

Rob Lightfoot, CEO of Lifelites, said: “Lifelites technology can be a lifeline to families and in this case it has enabled Lukas and Aubree to enhance their experience at the The Joshua Tree. Our technology is there to help the whole family, and we know that siblings face their own unique challenges when their brother or sister is diagnosed and start attending care centres like the Joshua Tree.

Lukas and Aubree are a testament to how vital our work is.”

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