Finley’s story: “They called me in to have a chat in another room, I knew what they were going to tell me”

Finley woke up during the night screaming in pain. The pain was in his ribs, and he had an unexplained temperature that wasn’t coming down. Doctors put it down to a pulled muscle and a virus, but when it happened again a month later, mum Natasha knew something was wrong. Their local Minor Injuries Unit referred them to the bigger hospital, and after several blood tests and lots of questions they called Natasha in to have a chat in another room. She had a feeling she knew what they were going to tell her. Mum Natasha shares their story:

It was Halloween night and we’d been out trick or treating, and Finley was absolutely fine. It was half term so he was off school, and earlier in the day he’d helped me wash our car. That night he woke up screaming in pain, he was saying he had really bad rib pains.  He also had an unexplained fever and it wasn’t dropping. He was then on and off through the night saying about this pain. I called up 111 in the morning and they said to be seen by a GP.

I took him over to our GP and they said that he’d pulled a muscle and a virus, which was a relief. We’d been cleaning the car the day before so it all fitted in with a pulled muscle. I got him home and settled him. This was on the Wednesday. I was back at work on the Friday and my mother-in-law was looking after him, I got back at about midday and he told me he was boiling hot, and my mother-in-law said that he’d been complaining all day that he’d been hot. I took his temperature, it was 39.6 degrees, and I wondered if it had anything to do with the pain he’d been having because you just don’t know. I rung up the doctors and they made me an emergency appointment for him to be seen. Again, they said it was a pulled muscle and a virus, but it didn’t go until the Monday – we ended up in hospital that day. We saw about four doctors and they all said the same thing, it’s a pulled muscle and a virus. So that’s what we put it down to in the end, and the pain and fever went after a few days, so I was happy with that.

He was OK until a week or so later he fell over in school and banged his nose and had a bit of a nosebleed. But then the following weekend he came downstairs and he’d had a random nosebleed, I thought he’d picked it, or maybe it had just started bleeding again from when we banged it earlier in the week. It was bizarre, and I noticed his gums were bleeding as well but I thought he must have just brushed his teeth too hard. They’re such tiny, minor little things, you wouldn’t ever relate them to something else.

A couple of weeks after that he woke up screaming in pain again, said it was the same pain as before but in his legs. He also had the temperature again that wasn’t coming down, and I knew something was wrong. The next day I actually texted my husband and I told him that I’d done the most stupid thing, I’d googled Finley’s symptoms and I was worried he’d got cancer. I just had to take him to be seen. I took him down to our local MIU and they referred us to the bigger hospital. That was it, we had the diagnosis the next day.

When we got to the bigger hospital they did give me a couple of the results from the blood tests, and they said they thought he had an infection, but because it was quite late at night there weren’t any consultants there. I think they knew what is was, but they didn’t tell me what they were looking for it that night. We didn’t hear anything else until about 10am the next morning when they came round. They started asked questions, and that’s when I knew what they were going to say, I just knew it. And then they called me in to have a chat in another room.

We went into the room and as soon as I sat down I said to them “I know what you’re going to say”, she asked what I thought they were going to say and I said “it’s Leukaemia isn’t it?”, and that’s when they told me that it was. I was there on my own with Finley, my husband was at home looking after our other two children. To be honest, that bit’s a bit blurry, but from what I can remember, I tried ringing him a few times but he didn’t answer, and I texted him. I don’t know why I did that, what an awful text, but he got down to the hospital straight away, it’s about a 30 minute drive. Luckily, and by chance, my sister in-law had just stopped in for a cup of tea so she was able to stay and look after the kids.

At this point only an adult haematologist had looked at this blood tests so they hadn’t 100% confirmed that is was ALL, so they’d sent a sample to Bristol Children’s Hospital to get it confirmed, although they did know it was leukaemia because it was so clear in the blood tests. We were told we’d need to go to Bristol Children’s Hospital once we got confirmation, and that they’d lead everything from there on.

We got confirmation at about 3pm and by about 7pm we were in an ambulance being blue-lighted to Bristol. It was all very quick.  Bristol’s about a 45-60 minute drive away, Bristol is the nearest city to where we live. We spent the next two weeks there, and we get home on 19^th December, just in time for Christmas.

We’re currently on maintenance treatment, and just over half way through! Overall Finley has coped well with this treatment, but there have been times when he’s been really poorly. The steroids had a major impact at one point, but overall he’s done really well. He’s had days when it’s not been great, but for the amount of hospital admissions he’s had he’s done well! We’ve been admitted to hospital loads of times along the way. I can’t even begin to say how many times, it was constant! The longest he went last year (2019) without an admission was six weeks. This was because of temperatures or various things wrong.

Finley’s got two siblings. His younger brother has coped fine with everything. He stayed with my sister in-law for those first two weeks when we were in Bristol, and he was OK when we got home but he wouldn’t go in my sister in-law’s house after that for a good three months. I think he must have thought if he goes in there, his mummy and daddy aren’t going to come back again. He was three at the time. Finley’s sister was nearly 11 when he was diagnosed. It’s probably affected her the most out of the two of them. It’s been hard for her being aware that Finley’s getting more attention, but it’s just how it is.

My husband and I were both working when Finley was diagnosed, both our workplaces were great. I worked for my step-dad so there was no problem there, and Gav works for a small company and they’ve been nothing but supportive. We’ve been so grateful.

CLIC Sargent Support

Lin is our CLIC Sargent Social Worker, I met her really early on. We met her when we were at Mudgrove for a clinic appointment. She’s great! She’s helped us out with financial stuff, various grants and things. She’s been such a support, and an ear. Someone to lean on. I can ring her, she’s like a friend. She understands what we’re going through, she’s been a huge support. We would be lost without her.

Coronavirus Pandemic Impact

At the end of last year we’d started to get some routine back into our lives. We managed to go on holiday in December just after Christmas and over New Year, I was thinking about going back to work, and we were doing more stuff as a family, and then lockdown happened.

It’s just one of those things, we were sort of getting back to a normal life but everything that happened last year did prepare us. We’ve done it once before so it’s just one of those things you’ve got to get through. It’s not been too bad.

Oncology families have got to take extra precautions anyway, we’ve got to be more careful. I’m shocked that more people aren’t – shouldn’t everyone be washing their hands anyway?