24 Oct Celebrating 1000 days of Treatment for Childhood Acute Lymphoblastic Leukaemia
When you face hard and tough times, milestones can be a saving grace. At the beginning of treatment, we marked the end of each phase of treatment with a celebratory nod. One thousand days of treatment is certainly something to mark in my book!
We knew from the onset that Felix’s treatment plan would be 3 years and 3 months. At the time, Felix was still a boy, a cute and chubby 10-year-old, Talia had just started secondary school and Rufus was a little poppet. I just couldn’t foresee the end of treatment in April 2019. The children would be three years older – for Rufus, a third of his life would’ve been influenced by cancer, Felix would be in Year 8 at secondary school and Talia would’ve started her GCSEs. The World Cup would’ve been and gone and Brexit wasn’t even part of our vocabulary back then.
From the point of diagnosis, our future had changed forever. All of our futures – the grandparents, the aunties, the uncles and our friends. All of our futures changed in a moment.
And here we are, edging closer and closer towards that finish line. The children have grown up into pretty normal kids – I think so anyway! Talia is blossoming and confidently stepping out in the world of study and work. Her humour continues to carry us through. Felix is growing into a strong and gentle young man – his increasing height continues to amaze me! Rufus is now exactly the same age as Felix as when he was diagnosed – that is something for me to get my head around!
At the end of the day, we are smiling and still living life.
I want to celebrate this milestone because, for some children, 1000 days from diagnosis tells a different story. I don’t need to need to go into details but we know how incredibly fortunate we are. We also know that things can change in a moment. We will never rest on our laurels again.
At this point, Felix has 184 days of treatment left. We know that his body is tired from the relentless chemotherapy – he is not. His gregarious and enthusiastic zest for life continues to shroud me with such pride. As does the determination and compassion of Talia and Felix. They know the end of treatment is a positive outcome but what it actually means for them, they don’t know or comprehend. What it means for Dylan and I we are unsure of. What we do know is that Felix is excited about breaking free from the shackles of chemotherapy, blood counts and oncology reviews. For me, that’s enough.
So as we live through day 1000, we carry another day of worry, concern and a frown that now represents so much more. Yet with it, we carry more hope, love and gratitude that I could ever quantify. We have been in this thing for 1000 days – we are exhausted but positively charged for this final lap.
As ever, we are truly grateful that you guys are still there for us – we can do this thing!
Let’s do this thing!