Posted on Tuesday 29 September 2020

Olivia’s story: ‘She had a mass the size of a small watermelon growing in her stomach’

Olivia, 8, was diagnosed with Burkitt’s Lymphoma earlier this year when doctors found a mass the size of a watermelon. Olivia was diagnosed a few weeks before lockdown so her family have noticed a difference between being on the ward as normal and during a pandemic.

When her parents, Chris and Sian, noticed other parents, who had received the diagnosis during lockdown, seemed lost they spoke to them about CLIC Sargent and would encourage them to reach out to their social worker for help.

A month after Olivia was diagnosed, Chris signed up for the Paul’s House to Paris cycle to raise money for the charity. While the event has been postponed to next year, he is keen to continue raising money and awareness for childhood cancer.

“Before Christmas, she’d go to bed at night and complain about a stomach ache – like normal kids do, she would come back down and say ‘my stomach really hurts’. We’d say have a glass of water, and she’d go upstairs, we’d go and check on her and she’d be fast asleep. This happened a few times before Christmas.

“Then we noticed just after Christmas she had a little bit of a paunch – we thought perhaps we really need to cut down her having chocolate because she has a bit of a belly on her.

“We got the other side of Christmas and it started to become more apparent that she would be complaining more often. She would go to bed at night then she would come down again and say my stomach really hurts. In the end it got to the point because she was complaining so much we took her to the doctors who then sent us off to A&E. All the signs were pointing to appendicitis because of her pain and where it was.

“After our first visit to A&E, there was supposed to be a scan and it was missed, we were sent home as Olivia showed no signs of being clinically unwell. A few days after that visit we noticed Olivia was getting worse so Sian called the on-call surgical team that we had seen the week before to find out when the scan was going to happen, they had no record of the scan that should have been scheduled so they told us to come in to the A&E department at Bedford hospital and see if they could get it done that day. The doctor who does appendix removals came to see us when he realised we’d been missed he got her seen straight away, based on that scan they thought that she had a perforation on her appendix that looked as though it had healed but was likely that or a cyst that was infected. She was admitted to the children’s was for a week of IV antibiotics to treat infection. He was saying he was happy to send her home because it’s not causing her any issues even though she had not eaten for a good few days and you could see the weight loss. I could see as a dad, I’m concerned about the fact she’s not eating. He was said she’ll be fine, we’ll get her back at the end of February, take the appendix out it might calm down, he said it looked like there was a cyst next to it.

“Luckily her temperature spiked. He said because the temperature spiked, I’m going to take the appendix out. Booked her in a day or so after to get it removed and she went up for surgery and we were chatting to another parent in the bay who said ‘she’ll only be an hour and a half, my daughter was gone an hour and a half when she had surgery.’

“We sat there, an hour and a half passed, two hours passed, two and a half hours passed and then we started thinking ‘where the hell is she? What’s going on?’ then three hours later the appendix doctor came in with another surgeon and they pulled the curtain behind her. Sian said ‘where’s my baby?’ and they said ‘she’s fine, she’s in recovery’. They sat us down and told us that when he opened her up the appendix was absolutely beautiful but there was a mass and this mass was attached to ovary, uterus, stomach, bowel, and he went and got another surgeon to have a look and they both feared it could have been a cancerous mass but not being in the field weren’t 100% sure. The female surgeon even said she felt like she could have removed it but it had veins coming out of it so they didn’t really want to touch just in-case it caused any issues, so they took a biopsy of it and some surrounding lymph nodes.

“When we got back to the ward they had moved our bed from being in a bay with 8 other families to a room on its own and that’s when loads of doctors and surgeons come to see us, it was quite overwhelming at Bedford. They said you’re going to go to Addenbrooke’s or London – one of the doctors knew somebody at Addenbrooke’s, and said you’re going to Addenbrooke’s don’t worry.

“We got shifted late at night to Addenbrooke’s and next day they confirmed it, it was a cancer and they were 99% sure it was Burkitt’s non-hodgkin’s lymphoma and a scan and blood results confirmed it. She had a mass the size of a small watermelon growing in her stomach. I said to him, ‘I’m a big man – I’m 6ft3 and I’ve got big hands, is it the size of my fist?’ and he said ‘no, it’s bigger’.

“He sat down and went through the plan and he said because of the size of it, we’ve got to hit her hard, he said it’s aggressive and it’s growing bigger. This was on the Monday – he said since Friday when I saw you, I can see physically that’s grown. He said we’ve got to smash it hard so you’ll spend most of your time here. He sat down and said it’ll be either a six month treatment or an eight month treatment, depending on how chemo reacts to it and luckily enough she rung the bell three weeks ago (27th June 2020). Sam the consultant at Addenbrooke’s, who has been overseeing the chemo, has said to us when she was on chemo Olivia is so resilient, there were times where I thought is she actually having chemo? Because she’s been so good through it all, she’s been ahead of schedule, she’s been spot on so we’ve been very fortunate.

“She was ahead of schedule so it was five months of chemo in the end. We think lockdown helped, because before lockdown we were getting parents coming to see us and relatives and friends on the ward, and other patients had relatives on the ward. We think that was making her ill and she was ill a lot at the beginning and that’s when we were spending a lot of time at Addenbrooke’s and then when lockdown happened she seemed to stay better and she seemed more healthier each time and I think it was not being around people.

“She was home a maximum of a month in the five months – she’d come home a few days at a time or she might do a week if we’re lucky. She would temperature spike after a couple of days and then back we’d go and she would be in hospital for two or three days and then she’d be starting the next round of treatment. It was hard work.

“She had allergic reactions, all of her hair has gone, eyebrows and eyelashes. She’s been pretty good, she’s not really moaned at all about it. She had some lovely long hair which Sian got cut into a bob so when it fell out it was easier to handle. She has coped really well, she’d had a really good attitude towards it all, she’s amazed us. She’s like ‘whatever, I’ve got cancer and I’m going to beat it’, that sort of attitude.

“The last time we were in there she was strutting around the ward, they love her they call her a diva and sassy pants because she’s so sassy.

“Sian was there with her and they let me and Holly go in and see her ring it. I walked up to the door to be let into the ward, I had some words I was going to stand and say, to say thank you and there was three or four nurses that had just finished a night shift but had come back in their normal clothes to watch her ring the bell and it got me, I walked in there crying, I couldn’t say anything. We’ve got some lovely memories from the ward at Addenbrookes  considering the situation we were in.

“I think if we’d have been diagnosed during lockdown it would have been an absolute nightmare, I feel for the families that have been diagnosed now and the parents with their children on their own. We were so fortunate, to get such awful news as a family, to be able to talk things through together, to lean on each other. Some of the newer parents weren’t able to have that as it was only one parent on ward at a time during lock down.

When we arrived at Addenbrooke’s the first night I beat the ambulance there, got to the ward – that night was probably my worst experience throughout the whole process and that was because the nurse there scared the living daylight out of me, I was frightened anyway I was sat in the room and thought I don’t want to be here. Then the next day when the ward woke up and you saw what was around you and what help was there, you felt at home straight away and you knew you were going to be looked after.

“Jess from CLIC Sargent has been absolutely magnificent. She said I’ll see what I can do for you, straight away. I’m self-employed and I didn’t know how I could cope with my finances for that long and she said she would see what she could do with grants and help and she did the best she could, which was really helpful.

“Jess helped us fill some forms in that we needed to fill in regarding claims that we could claim for. She mentioned what help we could get from the different charities and what different funds we could get. Just popping in and making sure we were alright every now and again. She gave Olivia a few bits as well which helped.

“They’re really missing her and the CLIC Sargent presence on the ward at the minute that can offer that support. We shared a bay with two new mums recently and you could see they were lost and I said you need to get in touch with CLIC Sargent, I said they will help you out the best they can.

“With regards to Hollie, She struggled with the family being separated so much. The girls share a bedroom as well, so all of a sudden Olivia’s not there. Hollie felt a little bit lost, she struggled. She’s alright now but there were times I just felt sorry for her. If I was at home with Hollie she just wanted her Mummy back. It’s been tough. Its also been tough on Samuel, Olivia’s older half brother, as the pandemic hit we couldn’t see him, weve not been able to see him for 3 months, but now treatment has finished and lockdown has eased he will be back with us before he goes back to school for 3-4 weeks so we are looking forward to that.

“We’ve had some good family time, even if we’re just sat around the house doing nothing it’s just nice to all be together. We can all be together in August. I was hoping they would have the Hickman line out in august so we could perhaps go away for a few days but it doesn’t look like it’s going to be the case now. There’s a queue and there’s another twenty-odd kids in front of her. Sam, our consultant, said he was hoping to get it out before she goes back to school in September so she has got some sort of normality with the other kids around her. They’d have to be careful of it because the other kids are going to want to cuddle her I should imagine – but he said it doesn’t look likely now as there is such a queue.

“That’s one of the reasons why I signed up to do the bike ride, so I could give something back and I felt like I was helping out. It was end of February, I’d settled down and I watched it a couple of times and I mentioned to my mate that I fancied doing this in September and he said let’s do it next year when you’ve not got so much on your plate because your mind is going to be full of what’s going on and I was adamant I said I think this is something I need to do this year, so it’s fresh and it’ll take my mind off of what’s going on. When I’m home I can get on the bike and smash a few miles in. So we signed up end of February/march and I mentioned it to another mate and both of them said yes straight away. There was another mate who wanted to do it but it clashed with him rowing in the world masters championships, luckily that’s been cancelled so I’ve roped him into doing it.”

Related Stories

Ainsley’s story: “Nothing ever prepares you for the mental toll the treatment takes on you. My independence and dignity were stripped away from me.”

Monday 27 September 2021

Aged 21, Ainsley struggled with the impact of his diagnosis. Here he shares his story and how his Young Lives vs Cancer social worker, Eve, helped him.

Aaron’s story: “Ciaran’s house was an amazing resource and we used it right through Aaron’s treatment”

Monday 20 September 2021

Aaron and his family stayed in Ciaran's House throughout his treatment to minimise their travel costs as well as the hours back and forth from home to hospital.