Morven's rhabdomyosarcoma story

Her eyelid began to droop

In November 2019, a few weeks before the birth of our fifth child, I noticed a slight drooping in Morven’s left eyelid. Morven wore glasses and I first thought this was the development of a lazy eye and took her to the optician. I was told her eyesight was fine so took her to the GP who suggested a problem with the muscle connected to the eyelid. They referred us to the ophthalmology department telling us muscles can often become weakened in this area for a number of reasons causing ptosis (drooping eyelid). Ophthalmology recommended an MRI scan, but weeks later there had been no appointment. In just a few weeks the drooping eyelid had drooped down further and had begun to bulge outwards and had turned purple. We were very alarmed and chased up the MRI asking to be seen urgently. Morven was otherwise extremely fit and well and even finished first at the local parkrun on the day of the MRI, so although we were concerned, we assumed there couldn’t be anything seriously wrong because she was so well.

It was a tumour

My husband phoned the hospital two days after the MRI because the appearance of the eye had become alarming. He left a message and the next day when Morven was at school the consultant phoned and said that she was so sorry to tell me that it was a tumour causing the problem. I can’t even remember the details of the call other than how lovely the consultant was and the fact that I asked her if Morven was going to die. I enlisted the help of our friends to take care of the other children and we picked Morven up for school. To this day the school receptionist and I share a particular bond because I told her something terrible had happened and asked her to go and get Morven from her class.

Worst day of my life

We were immediately plunged into a world of hospitals and appointments. They had to work out the best pathway for us but a few days later she underwent a biopsy and a few days later we attended the children’s hospital for a series of scans. We were met by the incredible Dr Julia Chisholm. We were told it would be a one week wait for full results.  We were scheduled to go to the Warner Brothers Studios Harry Potter tour the day after the biopsy and were told we could go. To this day, I can’t even look at pictures of it and tear up if someone mentions they are going as it was one of the worst days of my life. A very long and terrifying week later we were given the results that it was cancer, and the cancer was localised but would need immediate treatment of nine rounds of chemotherapy and radiotherapy. Our world was turned upside down as we tried to make sense of all we had been told and tried to learn as much as possible about the treatments and drugs involved. 

Starting treatment

Morven’s first chemotherapy was 1 February 2020. We had no idea what to expect. She was dreadfully sick, throwing up for two days. It was excruciating to watch, all the more harrowing as I had a seven-week-old baby to breastfeed while in hospital with her. However, after a day or two she recovered her strength and went back to school. Two weeks after the treatment she lost her hair which thankfully I had already cut short. I cut mine short and her dad and brother shaved their heads, my son eventually raising over £3,000 for the Royal Marsden in the process. The second round of chemotherapy was slightly better as the right cocktail of anti-sickness was given at the right time, but we lived on our nerves constantly taking temperatures, panicking and worrying about the Hickman line she was fitted with being damaged at school. She did however remain healthy. Even when her counts were at their lowest, she was still determined to run in the inter schools’ cross country. I was so incredibly proud. She attended junior school at the time and I could not have asked for more in terms of support and help from them. The management and teachers will forever hold a special place in my heart. The support from the whole school community was incredible and they supported Morven in her decision to bravely share her diagnosis with her class.

The impact of COVID-19

Coronavirus (COVID-19) hit in the third chemotherapy round which made life challenging, but ultimately meant Morven was not mixing with others and remarkably she stayed infection free throughout her entire treatment period. It also meant she wasn’t the only person missing out on school and experiences so she wasn’t as socially impacted as she would have been. After the fourth round of chemotherapy, Morven was assessed and granted proton beam radiotherapy at the hospital in Manchester. This was hard as our family had to separate for a time. Her dad taking her to live in Manchester so that they could attend the hospital each day while he worked while I remained in Surrey with the other children. When Morven was diagnosed, we decided to return to our native Scotland to receive more family support. We had considered it prior to this, but this was the tipping point. By the time she went to Manchester with her dad the house had been sold and I was preparing to move with the other children, which with COVID was hit by delays and uncertainties. Eventually in May 2020 the whole family went to Manchester to be with Morven as she finished her radiotherapy treatment before we returned to Scotland.

The cancer has gone

Morven coped amazingly with radiotherapy, never needing sedation and being healthy and active by jogging out with me every day along Manchester’s canals. Manchester will always hold a special place in our lives and the staff were unbelievable. We returned to Glasgow where Morven finished her last chemotherapy treatments in July 2020 under the care of Dr Dermot Murphy. He still remains a trusted and wonderful figure in her ongoing monitoring. By the end of chemotherapy, Morven was beginning to find it harder and harder to recover but still managed to run a charity race in aid of the hospital. In September 2020 we were given the news that the cancer had gone, and treatment had been successful.

Dreams of being a professional footballer

Morven returned to school when they reopened in August 2020 and has never looked back.  She excels academically and loves all sports particularly football and running. She played for her local team St Cadocs Youth Club and in 2022 was girls only player of the year and mixed football player of the year. In August 2022 she was signed by Kilmarnock FC’s girls academy programme. She has represented her running club Giffnock North at the highest level. This summer she will go to play at a summer camp for Chelsea FC, her dream. The Club has supported Morven through their foundation with a trip to their training ground and to a match after COVID restrictions were lifted and it will be very emotional to see her go off to this camp with them in the hope of one day becoming a professional footballer.

Morven inspires us all

Morven continues to have an MRI every four months and attends clinic with her consultant. All we can do is hope and pray she stays well. She is now almost three years all clear, and we can’t even believe it happened.  It was the hardest thing in the world as a family to watch this happen to Morven as well as having a new baby, a toddler, a house move between countries and COVID to deal with, but she inspired us with her bravery and all that she has gone on to do. I hope that sharing this story will inspire others not to give up, to see that there can be a way through and to draw strength from their children’s courage as we did with Morven. She had a smile on her face the whole way through and we felt that we had to do the same. Thank you for giving me the opportunity to share this story.

Cara, Morven’s mum, July 2023

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