Since receiving life-saving surgery for anaplastic ependymoma (a very rare and aggressive brain tumour) when she was just 16 months old, Sayuri (now seven) has endured more operations and general anaesthesia than most people experience in a lifetime.
Being in a hospital for an operation and recovery is emotionally and physically challenging, and also socially isolating. To help her get through these tough times, Sayuri takes a selection of her soft toys to hospital admissions and treatment appointments.
Sayuri’s mum, Ichika, believes that Sayuri’s soft toys are not just for comfort and fun: “She plays hospital with them, which helps her process her experiences. We remember that the first word she spoke, after one of the intense neurosurgeries, was the name of her favourite ‘super hero’ toy. Hospital staff often used Sayuri’s soft toys to communicate with her, building trust and helping her feel more relaxed.
When Cancer Support UK contacted Claire House Hospice (where Sayuri receives emotional and ad-hoc nursing support) to ask them to nominate a child to receive a very special cuddly bear, staff instantly put forward Sayuri.
Gemma Holding, Cancer Support UK’s CEO, said: “For almost all her life, Sayuri has had to face up to a really tough ride with cancer. We thought this brave little girl thoroughly deserved an early surprise Christmas gift in the shape of our special Cancer Support UK bear.
“This cuddly bear is fully heatable and designed to provide a calming and positive sensory experience. He is the ideal companion for a child being treated for cancer, such as Sayuri. We hope he brings her much comfort and relief from stress and anxiety.”
Ichika describes her daughter as a happy and unspoiled, bright little girl, despite four major operations to remove the tumour, nine months of chemotherapy and over 60 sessions of radiotherapy.
“Sayuri’s most recent major operation was 16 months ago. But because of the high risk of further relapse, every three to four months she has MRI scans under general anaesthesia. Thankfully her scans have shown no further tumour growth since then.
“Although blessed with good physical health, Sayuri becomes tired fairly easily and her balance is impaired, which means it is not safe to leave her alone, particularly on a hard surface.
“This, however, has not stopped Sayuri from enjoying attending a mainstream school, with support to oversee her mobility.
Despite the amount of time spent by Sayuri in hospital, her parents have tried hard to make her life as enjoyable and interesting as possible.
Ichika says: “Sayuri loves playing computer games and is an avid Animal Jammer. A tablet with Wi-Fi has seen her through chemotherapy, confinement to a hospital bed and waiting for procedures in clinics. Her teachers describe her keyboard skills as incredible.
“This Christmas we can relax with the knowledge that her recent scan showed no progression of the cancer. Although no doubt our next experience of ‘scanxiety’ will begin as the date for Sayuri’s next assessment looms in three months.
In the meantime Sayuri is looking forward to Christmas and spending time with her family and “Cutie”, which is the name she has given to the Cancer Support UK bear. Sayuri thinks that if Cutie had a job, it would be wrapping presents like an elf.
“Sayuri loves putting up the Christmas tree at home and can’t wait for her ‘big’ siblings and their children to stay over the festive season.”
In 2020 we helped 4,952 people during their cancer journey, and as a small charity who receive no government support, you are a vital part of our work. For example, a donation of £5 could pay for a pair of toasty warm socks, included in our Kids’Kit, to help with the common side-effect of cold feet during cancer treatment. Please help us send more Kids’ Kits out to children like Sayuri by making a donation – thank you.
