It’s been a year since Dex didn’t wake up that morning. A year since an ambulance was sent for us, and a year since my stomach plummeted as the words “he has Leukaemia” were spoken.
It’s been a tough year that threw us straight into the deep end of Paediatric Oncology, something I’d never in a million years thought we’d be a part of. A world that if I saw a mention of online, I’d quickly scroll past, not wanting to know.
During this year I’ve learnt how to be stronger than I ever thought I could be (you would be too by the way!). I’ve learnt how bloody amazing, brave and courageous children can be. I’ve also learnt how lucky (sounds a funny thing to say, I know!) my family are to have been dealt the Leukaemia card. It’s a cancer that responds well to a relatively gentle treatment and has a high cure rate. Some families have it so much harder than we have, and their stories have left a permanent mark on my heart.
Even though the treatment for Leukaemia is gentler than some treatment plans, I’ve still watched Dex disappear in front of my eyes, changing into a child who didn’t want to talk or laugh or play. I’ve sat with him while he’s cried with pain, carried him up the stairs when he couldn’t walk, picked him off the floor when his legs gave way, stroked his back while he’s been sick and held clumps of his hair as it came away in my hand – these are all side effects of the treatment. I’ve seen him hold back his tears, being brave like an adult might and I’ll never forget my heart breaking when he pulled me down to his height and whispered in my ear “Mummy, will I feel anything?” before being walked into the treatment room for the first injection of chemotherapy.
We’ve spent the year consumed by hospital trips, drug charts, blood tests, chemo administration, overnight stays, emergency visits, blood and platelet transfusions. There was room for nothing else in our lives. It was all about survival and it’s only now I feel we are starting to re-surface.
Despite the hard parts, there have been moments of complete peace and happiness. Surprisingly, I’ll always have fond memories of our time spent within the hospital walls, with no other distractions and nowhere to go, you become very present. We’ve laughed so much, we’ve played for hours (without me popping off to put a wash on), we’ve stayed up late having movie nights and roamed the halls making up games. We’ve giggled at getting told off by the ‘moody’ nurse and we’ve entertained guests, Dex thrilled at showing them around the ward and importantly, how his bed goes up and down. Back at home, spending time with my children and being completely present with them was the only thing that really mattered.
I’ve seen Dex grow into a confident little boy, far more confident than before. He bounds into the hospital, chats to everyone, asks the consultants to go and get him his favourite crisps, and politely demands his reward stickers. He wants to know exactly what’s happening and says “OK let’s do it, I’m not scared!”. He watches injections and doesn’t flinch, he’ll have general anesthetics surrounded by adults and just chats away, he’ll wake up with people he doesn’t know and just cracks on asking for the all-important stickers, making sure he’s got some for his sisters too.
He’s confident, he’s incredibly brave, he doesn’t moan and he doesn’t dwell. Most kids I’ve met in our position are exactly the same, we can learn a lot from them! The experience has shown us such kindness – hundreds of people have reached out to us, sent us gifts, written to us, kept us in their thoughts. Friends and family have rallied around, dropping everything to help us when we needed it, it’s brought us all closer together. The medical team have skill and knowledge that blows my mind and they care about getting our boy better as much as we do.
Dexter will continue to take daily chemo at home, have a weekly blood test, a monthly check over and a lumbar puncher every 12 weeks until 2021 but the crazy schedule and bad side effects are done. He’s back at school, back with his sisters, back at home. He is now planning on being a doctor.
Leading up to the year anniversary I felt that something was brewing, something bad was going to happen. The day came and I totally forgot about it, we were out walking the dog and came home for a roast and a film snuggled on the sofa all together. How lucky we are to all be together! It doesn’t matter what happens in our lives from now on, if something hard comes our way, we’ll find a way to work through it, as long as we are all here and we are well, then life is good!
Josie x – Mummy Social Founder