On Eddies 4th birthday he wasn’t quite well. Nursery had noted that he was much quieter than usual and was spending a lot of time napping in the book room. We took him to see 4 medical practitioners over the course of 4 weeks who didn’t really know what was going on but suspected it was a back to back virus. I just thought he had picked everything up from nursery, as children do. I never once suspected anything worse.
After 4 weeks, he eventually had bloods done and within 12 hours, we were called by the local hospital and told that Eddie needed to come to the hospital ASAP for more tests. We were transferred to RMCH who have been incredible for the past 3+ years – they’re now part of our extended family. We still hadn’t been fully told that he had leukaemia but we knew that it was most probably this. We were cared for by the most fantastic set of nurses and hospital staff you could ask for.
Eddie has had more medications than any person should have to take during their lifetime and although he has never gotten over having to have the wiggle put in (hickman line), he has overcome many medication battles over the years.
We’ve had some really touch and go moments during treatment where he had a seizure and where a fungal infection practically took over his body, and he’s become close to being admitted to ICU but overall, he’s been relatively well throughout treatment.
Its been tough for Eddie because we welcomed his brother into the family 5 months after diagnosis, immediately followed by lockdown a week later and then losing all his hair so there’s been an awful lot of change and adjustment. He’ s been such a superhero though throughout.
We were given a Milly’s Smiles bag on the first week that we arrived on the ward. I had kept hearing all about the Milly Bags but did not realise how amazing they were until I opened it. I was literally in tears at what was inside it and couldn’t believe we had received something so wonderful at such an awful time.
In February, Eddie rang the End of Treatment Bell and in July he had his port out. Its been a scary step stopping all the chemotherapy, steroids, antibiotics and weekly appointments but we are slowly adjusting to our new normal. Fingers crossed everything continues to be positive!