Isla’s story: “All that matters for us is that all four of us are together because last year we were in hospital”
Isla’s Mum, Amanda, noticed Isla’s face was swollen last October so spent two weeks taking her into the doctors every day to be checked. She asked the doctor to do a blood test, which later showed she had leukaemia.
Isla went on to have months of chemotherapy followed by a stem cell transplant during lockdown, this year. Isla and her family were supported by CLIC Sargent throughout her experience including at Christmas time last year when they were able to spend Christmas day in the nearby Home from Home so they could all be together.
Now, Isla is home and looking forward to a family Christmas. Her family are sharing their story today to highlight how much CLIC Sargent supported them and make sure we can bring light for other young people with cancer this Christmas.
“It was last October she just started getting a really swollen face, she was bleeding a lot in her gums and her lips – that was the only two symptoms she had. I was going almost every day to the doctor’s surgery for two weeks and they were ignoring me and then in the end I actually had an argument with one of the senior doctors to demand a blood test, because they were going to send us away again. He made me feel like a bad mum for wanting to get a blood test for Isla because he was so sure that it was a viral infection.
“Isla ended up in intensive care on the Monday and our consultant told us that if I didn’t push it on that Friday we could have potentially lost Isla. She was high risk AML, Acute Myeloid Leukaemia. On the blood test, they noticed the white blood cells weren’t quite right so they had to do another blood test and then that night they told us that Isla had leukaemia and then we got sent to Bristol on the Sunday, we’re from Plymouth.
“I thought it was something serious but nowhere near to this extreme. I couldn’t take it in, when they told us it was leukaemia obviously I know what leukaemia is but I just said to her ‘I just don’t understand what you’re saying’ and she said ‘your child has got bone marrow cancer’. It’s unexplainable how it made me feel and then it didn’t settle in until a while later and then it just crumbles you really. You just never expect you’re going to be told that, do you?
“Straight away it was chemotherapy and she had chemotherapy every month until her bone marrow transplant. We were waiting around four weeks to be told whether she was high risk or medium risk or low risk – when we were told she was high risk in the middle of November, they then told us that they had to start the search for potential matches. They had several but there were four that were the best ten out of ten matches.”
As well as chemotherapy, Isla had to have a bone marrow transplant which, because of delays with potential donors, was pushed back until March 2020 when the country went into a national lockdown.
“They made contact with the first one and they said yes and then they turned round and said they didn’t want to be a match, they didn’t want to help Isla, that was four weeks after. Then they had to then ask another donor if they wanted to help and they said yes and then two weeks later they said no they didn’t want to donate so that was so stressful because then they had to go with an umbilical cord so that was quite stressful because we were thinking is it as good as a stem cell match, because they don’t do them on a regular basis like a stem cell donor but Isla’s donor was a ten out of ten match again.
“Isla went into hospital on the 1st of March and the day before Isla’s transplant day everyone went into lockdown so it was quite stressful because only one parent was allowed on the ward and we weren’t allowed in the parents’ kitchen to make tea, coffee or eat. You have to deal with your child having a transplant and then covid on top of it was awful.”
Throughout their time in hospital, Isla and her family were supported by CLIC Sargent. They had stayed in the nearby Home from Home since the day after Isla was first transferred to Bristol. Their CLIC Sargent social worker Anna also helped the family to access grants and offered them practical and emotional support throughout.
After Isla’s transplant she had to stay in the hospital for seven weeks. After her transplant, Isla and her Mum were able to stay at the Home from Home, CLIC House.
“Seven weeks she was in as we had to go to CLIC House and we stayed there for four weeks. It was amazing – it was just me and Isla so it was hectic because I was by myself again but we had the whole house to ourselves because at the time they weren’t letting two families in the same house because of covid. it was lovely to see Isla in a house and not locked in a room. It was nice weather so we had the garden, it was lovely. I was able to cook for her again, she could ask what she wanted and there were no limits. It was just lovely.
“We’ve also got a son so my husband had to stay in Plymouth with my son and I hardly got to see him either because parents were allowed to swap over but they weren’t happy with it to a certain extent and I completely understand because you don’t know who they’re seeing. At the time it was quite worrying because there wasn’t much information on covid in March so we did swap a couple of times but not much. I missed my son so much because when we went to CLIC we couldn’t swap at all so when we came back at the start of May it was quite emotional when we were all reunited together, it was amazing.”
After a tough year, Isla’s family are looking forward to spending Christmas all together. Especially after Isla was in hospital having treatment this time last year.
Despite having to be in hospital, the staff at the Home from Home managed to help bring some Christmas cheer to Isla and her family though, as they were able to have Christmas lunch all together in the nearby home.
“This is our first Christmas that we’ll all be home and I’ll do all the cooking because the two before we were with family and she had chemotherapy at the start of December so we had to be in. The ward made it special as they would do but it was quite empty in the end as they tried to get as many families home as possible, who could go home. We actually managed to get to the CLIC House on Christmas day and my Mum came up and cooked for us so that was quite nice. All the families had gone home so we had the house to ourselves again so that made it more special. It was quite hard going back to the ward in the afternoon and being by myself with Isla again. When you’ve got two young children you just want to be at home celebrating Christmas and we just couldn’t.
“We’re staying home this year and I’m so excited, I’m going to cook and we’re going to put the tree up a little bit early just in case we have to go to the hospital or anything. Isla can help decorate the tree and be part of all that. We’re really excited this year.
“All that matters for us is that all four of us are together because last year we were in hospital and that just wasn’t great. You just want to be at home watching movies and having lazy days, that Christmassy feeling just wasn’t there at all. They did do the Christmas dinner on the ward but nothing beats a home-cooked roast.”
Posted on Wednesday 2 December 2020