Posted on Tuesday 17 November 2020

Merryn’s story: “Without CLIC Sargent I think we would have been wandering around in a state of shock for some time”

Merryn was first diagnosed with a brain tumour and cancer of the central nervous system in August last year after suffering with seizures while on a camping trip with her Mum. Since then, she has had a nine and a half hour surgery followed by proton therapy and six months of chemotherapy.

Merryn’s treatment finished just before lockdown hit earlier this year, which meant she had to go straight into shielding and could not return to school. Her family are sharing Merryn’s story this Christmas to show how CLIC Sargent were able to bring light to the darkest of times this year.

“We first noticed something wasn’t right with Merryn when she started having seizures. She had never had any seizures before and within weeks she had three. Her first seizure was at a friend’s BBQ. It was terrifying and horrible. We were so lucky to have first aid responders with us and Merryn was taken to hospital where they did some tests. But as Merryn was fine within a few hours, we were discharged and went on about our normal life. A few days later Merryn went camping with her mum to Sennan Cove and within minutes of setting up the tent, Merryn had another seizure and the coastguard helicopter had to come and get her to take her to hospital.

“She stayed overnight in hospital but was again OK after it. After a third seizure, the hospital organised an emergency MRI scan and from that moment everything went 100 miles an hour. The doctors saw an abnormal growth on the scan and we had to travel to Bristol where they did some more tests and confirmed something was there. She was booked in for surgery the following Friday and had nine and half hours of brain surgery. Thankfully the surgery was a complete success.

“When we got the results of the biopsy our world imploded.

“Merryn was diagnosed with a high grade brain tumour and cancer of the central nervous system. Luckily in the surgery the doctors had been able to get the whole of the tumour out. But that wasn’t the end of it as Merryn then had to have proton therapy and chemotherapy for six months.

“Merryn finished her chemotherapy at the beginning of March. We were on autopilot for so much of her treatment and hospital stays.

CLIC Sargent social worker Anna offered practical, emotional and financial support

As soon as we were given a diagnosis was when we were put in contact with a CLIC Sargent social worker Anna. CLIC Sargent gave us a grant and supported us by providing free accommodation in the Bristol Home from Home Sam’s House. That has been the biggest benefit for us, sometimes we were there for weeks at a time and financially it saved us. We can’t thank CLIC Sargent enough for giving us that space to stay and to be close to Merryn whilst she was in hospital.

“Without CLIC Sargent I think we would have been wandering around in a state of shock for some time.

“It was nice to have someone to talk to who understood things and we could be ourselves with.”

When lockdown hit in March, Merryn’s Dad Stuart struggled between staying at home to shield with his family and needing to go to work. Anna was able to help liaise with his employers and make sure he could stay at home to be with his family.

“Going to work was extremely stressful, I was scared and terrified of bringing something home, after seven months of hell before that too. I couldn’t do that anymore.”

With help from Anna, Stuart was put on furlough so that he could shield with his family throughout lockdown.

In the summer, as the lockdown began to ease and restrictions were lifting, Merryn and her family were starting to celebrate the end of her treatment and beginning to start a ‘new normal’.

“We had her sixth birthday, which was amazing because we really didn’t think she’d get to her sixth birthday, which was a miracle. That was lovely. Again, it was during lockdown – I probably would have had an incredible party for her but we kept it very low key with doorstep visits. That was a bit of a milestone for us.

“Then in June she had her scan. When she had her initial operation they removed the whole tumour so there’s none of that present when she has her scans but on this particular scan, it came back that there were abnormalities. At a glance they said ‘it looks stable’ then obviously had to come back and tell me that actually there were abnormalities and significant changes and at that point they couldn’t say whether it was damage from radiation or reoccurrence of tumour so they said we’ll do another scan in six weeks.

“By the second week, lockdown had eased a little bit and we could mix so she went to my Mum’s for a sleepover. She hadn’t had a sleepover with my Mum for about a year probably and it’s been really hard for us to let her go anywhere so it was a big step for us as well.

“Mum just rang to say ‘I think she’s having a night terror’ because she can have them. I thought I better go over. I got there and she was on the bathroom floor, I looked at her and said ‘Mum that’s a seizure’, my Mum hadn’t recognised it. An abnormal scan and then a seizure, her first one in twelve months, I just thought that’s it, tumour’s back.

“We had to wait a further four weeks for the scan. I’d basically written her off, I was in a state of ‘this is it, it’s back, what are we going to do?’

“However, the scan came back stable so although the changes are still there, they haven’t grown at all. It hasn’t disappeared so it’s something that’s got to be monitored.”

Merryn and her family are looking forward to spending Christmas together this year away from hospitals, at home together.

“I’ve booked a trip away because last year Christmas was just hideous I think we got home the night before Christmas Eve. We were discharged from Bristol Children’s Hospital with her having quite a high dose chemo. So Christmas for us was just a complete write off really.

“The year had been really pants so it was hard to want to celebrate it.

“This year we’re hoping to go away to Centre Parcs to have a nice time as a family, to enjoy it a bit more and hopefully be a bit more normal.”

Merryn is sharing her story this Christmas to highlight the incredible support CLIC Sargent provides to young people and families like hers.

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