Posted on Thursday 10 September 2020
Isabella’s story: ‘We don’t want to ring the bell yet until all this is over’
Isabella, aged four, was diagnosed with Wilm’s tumour in August last year after feeling unwell for eight months. After 31 weeks of chemotherapy, surgery and multiple trips back and forth to the hospital, her family had been working towards the moment Isabella’s treatment was over and she could ring the end of treatment bell.
However, with her last dose of chemotherapy the day after the country went into lockdown, they were not able to celebrate the way they had hoped.
After months of having her Mum, Dad and sister, Amelia, all together in the hospital with her, Isabella could only go in for her last round with Mum, Samantha. Now, five months later, Isabella is yet to ring the end of treatment bell. While she can ring it with one parent present, they want to wait so they can enjoy the momentous moment all together as a family.
“It started at the beginning of August. Isabella had been on and off poorly for about eight months. She’d had lots of infections all at once, two abscesses, tonsillitis. Then, last August, she was playing with her cousins and my friend’s child and she just went off to the sofa and fell asleep. When she woke up she didn’t want to do anything or speak to anyone and then the next day she was having lots of naps in the day, which is unlike her, and her nappies weren’t wet.
“We kept going up to the hospital numerous times and finally she had tests done. She went in on the Tuesday night, stayed in and did a test on Wednesday. There had been about ten different consultants around her bed but we didn’t understand why and then a doctor pulled me and her dad into a room, and they said ‘we highly suspect it could be Wilm’s tumour’. We were both very shocked and we just broke down. They were moving us round to another ward, as they were suspecting it and then it was confirmed on the Thursday.
“We did not expect that at all, the first time we went to the hospital they didn’t even touch her to examine her and said that they thought it was viral. We went back two days after as she wasn’t better, they checked her stomach and said it was constipation and viral. Then she wasn’t drinking, so we went back the next day and another doctor saw her, he felt her stomach and said it wasn’t constipation but there is retention. We thought maybe it was her appendix. It did not click at all that it could have been cancer, we wouldn’t have expected that.
“As she is autistic, she is terrified of doctors and hospitals and wouldn’t let people go near her. She started to gain a few doctors trust but she still doesn’t understand what is going on, she just knows she has to have medicine. Before diagnosis, she wasn’t verbal so it was very difficult for her to tell us what was wrong, she would just be waking up in pain.
“Five weeks before Isabella was diagnosed, we had Amelia, (now 10 months). Luckily we had a good family support around us to help with Amelia – my Mum would help by having her overnight as we would stay with Isabella in the hospital. I would have to express milk for Amelia to have during the night.
“Isabella’s treatment, which finished on 24 March, lasted for 31 weeks. She had four weeks of chemotherapy before having surgery and then a further 27 weeks of chemotherapy after. We were in hospital for a month after Isabella was diagnosed, in which time she received four weeks of chemotherapy. We then went home for a week and a bit and then back in for surgery. She stayed in hospital for six days after the surgery but within 24 hours we had to go in the next day, she had a UTI, was dehydrated and her gut wasn’t working properly. We were then in hospital for three weeks.
“After that, Isabella would go in for chemotherapy once a week for the rest of her treatment. She had various side effects; constipation, her energy levels have gone down massively and she doesn’t eat well anymore as her taste has gone completely but it is slowly coming back. One type of chemotherapy would make her sick for about a week and she would just be on the sofa.
“She’s only started in the last four months to realise that she has no hair, so that was a change to her. We let it fall out naturally as if we had cut it she would have panicked.
“As she is autistic it is hard trying to get her to understand what is going on, we have to reassure her that the doctors and nurses won’t hurt her. When she has a scan we say she’s having a picture taken. iPad and phone with headphones are good as she focuses on that instead of what is going on around her. We will tell her about it when she’s older.
“Isabella started pre-school last April and went until summer holidays but then as she was diagnosed in August she then didn’t go back until January, when she started to do a few days and couple of hours a day but that stopped due to coronavirus.
“It was hard when we were shielding to keep her entertained inside, but also hard to get her out as she’s so used to being inside, so I’m trying to find things to entertain her. It was difficult being in the hospital as well because you couldn’t go wherever you wanted. Isabella couldn’t touch anything; she would always touch the lift button when we went in.
“It was very different for her as only one parent, and no siblings could go in with her. She wasn’t allowed to be near the nurses or doctors, they couldn’t do her obs in the last chemo. This made me feel nervous, as I thought this could be the one time something goes wrong and they wouldn’t know.
“We don’t want to ring the bell yet until all this is over, because it doesn’t feel the same when all this happening – friends and family wouldn’t be there. That will then feel like the final step. And we’ll be able to think ‘thank god’.
“We couldn’t go celebrate, it was very frustrating for her as she doesn’t like being crammed in, she couldn’t see anyone her friends, her school, her cousins, her nan and grandad.
“Our CLIC Sargent social worker Nicky was nice, she would talk to us and listen to what we had to say, if we had any issues she would help, she helped with money grants which was really helpful. She also put us forward for a grant for Christmas presents for the kids. She was a massive support for all of us. She chats to my mum and dad – and gets on well with Isabella.
“We first met when Nicky came to our room and spoke to me. She spoke about a coffee morning to talk about whatever we wanted, some adult time, so I went up there and Nicky introduced herself, we filled in a form and they gave us a grant for the first few weeks to help with costs of being in the hospital and they gave us some vouchers, she explained what she does and what she can help with. She gave us a big bag with lots of bits – like toothpaste and a coffee mug.
“Her support has been very important, if she wasn’t around we wouldn’t be able to ask questions, doctors and nurses can be too busy to answer questions, I could text or call her and she would answer as best as she could or get someone else to.
“CLIC Sargent have helped us through this whole journey, we wanted to give something back to them to help other families, everyone needs that support – having someone that’s not family makes it easier to talk to about things. They know how things work because they see it all the time.”