Patient Stories - Maddie

Maddie and Ben

When Maddie was diagnosed with acute lymphoblastic leukaemia, her family’s world stopped. Mum, Melissa and Brother, Ben (10 years old) tell their story.

On 26 April 2019 at 11:25pm – our world stopped. After weeks of to-ing and fro-ing with the hospital and 18-month-old Maddie who lost the ability to walk and weight bear overnight, a doctor told us my beautiful girl Madeleine, had acute lymphoblastic leukaemia.

Sorry, I haven’t even told you who I am. I’m Melissa, married to Chris and mum to Madeleine who is four and Benjamin who is ten. I’m really grateful to Keech for letting me write to you and share our story.

After the initial diagnosis day what followed was over two years of continuous and brutal chemotherapy, largely intravenously but Maddie also had 38 general anaesthetics as some of the chemo had to be administered through her spinal tract. Plus, Maddie was taking a daily cocktail of chemotherapy drugs and lots of other medication with doses changing constantly.

Each of the treatment cycles were different and they changed every four weeks. At home Chris and I, as being Mum and Dad, became Maddie’s carers, which had a huge impact on Ben as Maddie took up all our time.

But throughout, Ben has been a real superstar. He always wanted a baby brother or sister and wished every night for his dream to come true, on the day Madeleine was born he was the proudest big brother and takes his responsibilities very seriously! He’s been a big part of Maddie’s journey, helping her throughout chemotherapy sickness, helping us to feed her, read and play with her – and trying to not let her pull her Hickman line out! – There were days when the only person who could make her smile was Benjamin, they share an enchanting and unique bond.

At the end of Maddie’s first four weeks of treatment, I’ll admit, we were really struggling. And that’s when we were introduced to Keech.

Ben said he’d seen Keech’s charity shops on his way to and from football but other than that, we didn’t know anything about the hospice. Mine and Chris’ thoughts were hospices are somewhere you just go to die…how wrong did we turn out to be.

It was June 2019 when we first met Keech properly in the shape of Jennie, Keech’s children’s play specialist and Hannah, the charity’s community play and activities co-ordinator, when they came to our house and were superheroes in human form!

On our first visit to Keech, immediately all our worries were calmed. It was completely different to what we’d expected or thought – we just felt ‘safe’. Maddie loved the rocking horse in reception and I remember feeling there was a sense of calmness about the place. I knew the Keech team would look after Maddie and take care of us; for the first time I felt the sense that it was going to be alright.

Maddie loves coming to Keech where she really enjoys the support group, Musical Bumps – she just comes alive. Both her and Ben love having music therapy which helps them express how they’re feeling. And, as a parent, you can’t ask for anything else. The difference it’s made to them is priceless. It’s also allowed them to play with other children in a safe environment. Keech takes away the stress of it all and allows them to be children. There is nothing more incredible than taking an immunocompromised child into a clean environment.

Keech has also helped us to be a ‘normal’ family, and, do normal things like treasure hunts, train rides, a visit to a local farm during lambing season and a family swim in their hydrotherapy pool – with its warm water. With Maddie’s Hickman line it just wouldn’t be possible in a public pool – but at Keech, we get to splash around and have fun, and it helps build strength in Maddie’s legs which is an incredible help.

Our journey would’ve been impossible without Keech, they’ve always gone the extra mile. Such as pulling out all the stops for Maddie’s bell ringing ceremony to mark the end of her cancer treatment and making this already special day for us as a family even more so.

Keech has made an incredible difference to us as a family – it’s the place where Maddie comes alive, where she’s able to meet and play with other children and feel safe. We couldn’t feel more grateful to Keech for looking after us.

We had no idea about how the hospice was funded, but we now know, as a charity, Keech relies almost entirely on donations and only receives around a third of the money it needs from the government. So, if you can, please make a donation today of £10 or whatever you can afford and help the Jennie’s and Hannah’s at Keech be able to continue to provide this life-giving care for other families like mine.

Thank you for reading my letter.

Melissa x

PS When Ben found out I was writing a letter, he wanted to write one too and tell you the difference Keech has made for him also.

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A letter from Ben (10 years old)

Hello there!

My names Benjamin, but you can call me Ben. I am 10 years old and big brother to 4 Year old Madeleine – Maddie . Maddie doesn’t call me Benjamin or Ben, she calls me Bear and I think that nickname is awesome!

When my Mummy and Daddy told me Maddie had leukaemia, I was really upset and scared. I’d always wanted to be a big brother, I was worried my little sister would be taken away from me and I hated seeing her covered in tubes and poked with needles.

It was hard for Mummy and Daddy who had to live in Maddie’s hospital room for months. I loved that Grandad John and Nanny Karen came and looked after me though. They took me to school and to the things I love doing like football and swimming, but I missed my mum and dad loads.

When I was able to visit Maddie in hospital, I liked reading her favourite book to her, it’s all about unicorns and princesses and is really girly but I didn’t mind, I just liked seeing her happy. I loved playing games with her when I was allowed as she was very ill and could easily get an infection. I was upset to see Maddie so sick, the chemotherapy treatment was really bad. It was hard to see her so poorly, I couldn’t make any of it better for her and I so badly wanted to.

Once Maddie was back home, Mummy and Daddy were really busy looking after Maddie. They said “in a minute Ben” pretty much after every question I asked. I know how tired and worried they both were and I used to help anyway I could. I would feed her through her tube and always told her never to pull any of the tubes out, although she still used to try!

When Mummy told me about Maddie going to Keech, I was really scared. I didn’t need to be though as everyone there was so kind and caring. At Keech, we could play with other children, which was loads of fun. Both of us loved art therapy. We painted our hands and talked about how we felt. We also loved music therapy with Nathan where I played the guitar. It was brilliant because I got to take the guitar my Daddy made for me (he’s a guitar repair engineer) which is really special!

I also liked going to sparklers on a Saturday morning where I played and shared stories with other boys and girls whose brothers and sister’s are also poorly. I liked hearing the other children talking and it helped me too.

Maddie’s hair has grown back now and like any sister she can be quite annoying! But I am really happy she is lots better. Keech has made everything better for me and Mummy & Daddy. Because of Keech, we can be together as a family doing fun things which is just brilliant.

Thank you!

Age 10

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