Posted on Friday 7 June 2019

Harry’s story – Floppychops

Harry was diagnosed with cancer aged seven. What started as a persistent pain, eventually developed into a rash and sickness on a family holiday. The family went from the airport straight to the GP and later Harry was diagnosed with acute lymphoblastic leukaemia.

Harry in 2018

“Our first inclination that something was wrong was when Harry had ankle pain during the night. I’m a physio but I couldn’t see much wrong. He seemed to recover, but after a while it was bad again, so we went to the GP who said not to put any weight on it. Things seemed to get worse, so we were sent to hospital where we saw a consultant paediatrician who believed that because I was a physio Harry was pulling the wool over my eyes. They said they would refer us to a foot and ankle specialist but again, he was probably having us on. No matter what they said I just knew there was something wrong.

By the time we had our appointment in March, he also had shoulder pain which made me wonder if it could be childhood arthritis. They took an x-ray of his shoulder which looked fine and they decided not to do a blood test. They referred us back to the same paediatrician who’d said he was making it up which I wasn’t thrilled about!

We went away for my husband’s 40th birthday to Munich and Harry was unwell the whole time. He was tired and couldn’t walk around the zoo without sitting down. He was being physically sick. One night I noticed he had a rash, I got a bit scared by that and because I was worried, the kids were too. I phoned NHS Direct to ask them if I should be worried. He also had bruising so it did make me wonder about leukaemia but I didn’t mention it to anyone else because I didn’t want to worry them. They said they wanted to check him out.

Our flight home was the next day and as soon as we landed I phoned the GP. I told them about the rash and everything else; they were superb and gave us an appointment immediately. I could see the GP was concerned; I was sat in the waiting room whilst she did a hospital referral letter and sent us off to a local hospital for tests.

Because I know the NHS as a physio, I knew what was happening was unusual and scary. They don’t normally tell the blood labs to expect a blood test, so the urgency worried me. They called us into a side room and said ‘I think you’ve worked it out, Harry has leukaemia’. “

It was an absolute whirlwind, it was like a bomb had gone off in our lives and nothing was in the right place anymore. I was just finding my identity again as an individual after being known as ‘Matt and Harry’s mum’ for several years but suddenly you are a mother of someone who is seriously ill. You haven’t got the luxury of mourning the loss of your previously well child because you are constantly firefighting."

“At the beginning of treatment, Harry had to choose between a Hickman line and a port. The play therapist came with two toy bears, one had a port and the other had a Hickman line, which helped explain the difference to him. Harry decided on a Hickman and the play therapist said they could put one into his own bears. But he didn’t want that to happen. He asked us to go shopping for a new bear, he wanted it to be a dog that was big enough to hug tight and it had to have long ears so it could cover its eyes when scared. I remember thinking we’d never be able to find it… but amazingly we found Floppychops!

The toy dog had his Hickman line put in at the same time as Harry so he could play with it and see how it works. Floppychops has always been there for Harry and has been a really important part of his treatment. Harry took him to school so he could demonstrate to his classmates what he had in his chest – it even helped the teachers too!  Harry went to theatre a lot during his treatment and Floppychops went with him every time and he became well known to the doctors and nurses.”

“As a family we want to give something back to CLIC Sargent and it’s amazing to know that the Floppychops pin badge will able to help others going through the nightmare. CLIC Sargent was there for us right from the start. Our CLIC Sargent Social Worker helped us out with a Carers Allowance, Disability Living Allowance and a blue badge because we were unable to use public transport because of the infection risk. We received a grant from CLIC Sargent which every newly diagnosed family is given, which helped us with some immediate expenses like parking. Our CLIC Sargent Nurse came into our home and took blood tests; she was also able to give some of the chemotherapy at home which meant we didn’t have to travel the one hour round trip to hospital.

Sam’s House, a CLIC Sargent Home from Home enabled my Mum to stay locally and help me during the day and provided her with somewhere to sleep whilst I slept on the ward with Harry. At weekends it was invaluable in giving me time with Harry’s brother, who was 10 years old at the time, in a non-hospital setting. It helped to keep us together as a family because we just couldn’t afford to be in a hotel for all that time. The day that the four of us went to Sam’s House together was a massive thing. We had a home cooked meal and I remember Harry asking if he could help cook and wash up – he described it as the best day of his life. It was just normal family stuff that you usually take for granted. We had taken him to Disneyland in Paris a few years earlier, we needn’t have bothered!

I’m now a member of the CLIC Sargent Parents and Carers Facebook group because I know as a parent of a child who has been through a cancer diagnosis you are in a unique position to offer support to other parents in a similar position. Harry is studying Finance and Accounting at Birmingham City University and we’re very proud of him. He is loving university life but as a parent it’s very hard because the child you’ve been able to health check every day, is all of a sudden away and responsible for their own health.”

Get your Floppychops badge from J D Wetherspoon

To find out more about how we help young people cope with the impact of cancer, please visit our what we do section. If you need support yourself please contact us using our online enquiry form or call 0300 330 0803. 

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