Post-treatment effects and monitoring
Four years after diagnosis Maisie was monitored regularly. Waiting for blood results was always a testing time for us as parents, but Maisie took everything in her stride. I felt guilty and hard when I would not allow Maisie to make a fuss over a needle. I would ignore her refusal, through exhaustion, to complete physiotherapy to strengthen her legs and feet. It hurt a lot – but I did it for you Maisie!!!!
Now it is a pleasure to watch her dance, run and swim and enjoy and share her academic achievements over lengthy, chatty telephone calls home.
Two years after treatment Maisie needed reconstructive surgery to her chest – an infection following a burn from chemotherapy had “eaten” tissue away. This was such a hard decision because it required a general anaesthetic and carried a risk. Everything went well and the team at the hospital did a fantastic job.
When Maisie was four years old our third child, India, was born. Cord blood from the placenta was collected and stored at the London Blood Bank for ten years in case Maisie would ever require a bone marrow transplant. I found this stressful – I wanted a healthy baby and a cord blood match for Maisie. We got both. Having India was such a joy for our family and Maisie and Jack love their sister! We all do!
Over the years our named nurse still provided support. I speak with her yearly. It is now 20 years later and she’s living in Australia and we still have our yearly catch-up on family news.