Here Dexter’s mum Michaela explains their journey so far.
Dexter was diagnosed on 18th November 2020 he was 3 at the time.
Dexter had become ill a few weeks earlier and we had tried several times to get him in with the GP but due to Covid they would not see him in person. It was only when he became really pale and I called the GP demanding he be seen that they sent us to a covid hub, when we got there the Dr took one look at him and told us to go to the hospital for a blood test.
When we were told it was leukaemia it felt like a nightmare, I remember getting to ward 6 and thinking how has this happened to our little boy. However every single person we encountered from the start was so amazing and explained every detail of Dexter’s treatment to us so that we understood. Another worry we had when Dexter was diagnosed was how were we going to tell our daughter Dexter’s big sister who was 6 at the time and at school it was really hard as due to Covid restrictions she couldn’t come to visit us in hospital, we were given books to help explain the diagnosis to Freya which really helped her to understand what was happening.
We stayed on the ward for 5 days, on our second day Dexter had his first lumbar puncture and watching him get put to sleep was really difficult, when we got back to the room the wonderful team at PACT had left us a bag full of food and snacks it meant so much to us and really helped lift our spirits.
Since Dexter’s diagnosis we have had many overnight stays at Sheffield Children’s hospital and every time we are blown away by the amazing staff that work there. Dexter had a bad side effect from one of the initial chemo’s used and lost the ability to walk and didn’t walk at all from Dec 2020 until July 2021, thanks to the amazing physio team he is now walking and running although he still struggles and uses his wheelchair when he is tired or if his legs are hurting.
We now visit clinic every 4 weeks and will finish treatment in January 2024 , Dexter has daily chemo at home which has now become part of our evening routine. Dexter also has steroids every 4 weeks which means he gets really hungry and can make him angry at times it’s always a guessing game to see which food he will crave. It has been a long and difficult journey but we have had so much support to help us get through it which has made a world of difference.
PACT has helped us by providing food when we don’t think about feeding ourselves, seems small but really makes a massive difference. We went to the Christmas party which was amazing Dexter still talks about this. We are also going to the caravan in August which we cannot wait for it will be our first holiday in 2 years.