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“There’s no other word for it, her treatment and the side effects were brutal”

Layla Mistry, now nine, from Sonning, in Berkshire, was just two when she was diagnosed with medulloblastoma in July 2016.

A young girl with medulloblastoma stands in front of some roses

At just two years old Layla was diagnosed with a medulloblastoma. She had to have surgery to relieve the pressure on her brain and also remove the golf ball-sized tumour. Five cycles of chemotherapy and a stem cell transplant of her own cells followed.

However, less than four years later in February 2020, the tumour showed signs of growing back. And Layla had more surgery a month later.

This time, her whole family – Mum Nimita, Dad Jay, and older brother Dylan – relocated to Manchester. Layla had 30 sessions of proton beam radiation to her brain and spine at The Christie Hospital. And later that summer had a bone marrow transplant from an unrelated donor. The family hope that one day they will find this donor and thank them for saving Layla’s life.

Happily, today, Layla is doing well. She has scans every six months. The latest, in April, showed no evidence of a brain tumour.

She goes to school, enjoys ballet, and tap dancing, and is also learning to swim and to play the piano – all the the things little girls her age should be doing.

Layla Mistry in hospital for treatment for her medulloblastoma brain tumour
Layla Mistry in hospital after her medulloblastoma diagnosis
Layla Mistry receiving treatment for her medulloblastoma

Going to hell and back

Her mum Nimita considers it a blessing that Layla was too young to properly remember the extent of her treatment: “There’s no other word for it, her treatment and the side effects were brutal. It was like going to hell and back, although you would never be fully back before having to endure the next chemotherapy cycle. 

“The treatment made her nauseous, she was vomiting all the time. She lost so much weight we had to put a feeding tube in. The ulcers in her mouth and throat meant she struggled to tolerate any food.  

“Low haemoglobin and platelet blood counts meant she was always needing to receive blood transfusions with every cycle of chemotherapy. 

“Every part of our life was affected – sometimes there was no concept of respite as it was all we could think about – it was mentally and physically draining, but we had no other choice but to get through it a day at a time.”  

The future is unknown

Layla sitting in a hospital bed during treatment for medulloblastoma

Layla lives with several side-effects from the medulloblastoma treatment, including high frequency hearing loss, mild kidney disease, and problems with balance and co-ordination. After her first surgery, Layla also had to re-learn how to walk. 

Layla’s mum, Nimita, said: “The chemotherapy treatment for children uses not only drugs that were developed for adults, but also drugs developed several decades ago. These drugs can have many side effects. Aside from the hair loss and nausea, chemotherapy can cause blood disorders, changes in thinking and memory and damage to organs, to name a few! The radiation treatment to the brain and spine can cause growth/spinal problems, as well as learning difficulties in the future. 

“So far, Layla is doing really well academically and has even taken her grade 1 piano and ballet exams. But the future is unknown.” 

There needs to be kinder treatments

Layla’s parents support research into kinder, more effective treatments for brain tumours in children: “There needs to be more effective, kinder treatments designed for children that can give them a better future and a chance of living life. Treatment can already take so much away from a child. They don’t deserve to also have their futures taken away from them. Ultimately, there needs to be a cure.” 

Our medulloblastoma research

Find out about the research we are funding to find better, kinder treatments for medulloblastoma – the type of tumour Layla was treated for.

Professor Marcel Kool