Saturday, 26 August 2017

A mother's account of coping with her daughter having leukemia one year on

Kirsty, left, with her mother, Dr Janet Chelliah

This is a particularly poignant blog post for me. Kirsty is my niece. A much loved darling. Dr Chelliah is my only sister and we have a very close relationship.

The words "She has Leukaemia, Babes..." still echoes in my head, even though it has been a year since I first heard those words from my husband, Neil.

My daughter Kirsty, who was 15, had just celebrated her birthday a few days before. It was a Friday at 6pm when I heard those words. I was just walking out of work having just referred a patient into hospital for suspected cancer.
Kirsty and her sister Melissa , together with their friends from Dancestars, had performed 5 street dances at a family event. It was meant to be a fun, exciting Friday as we then were expecting family and friends to arrive that weekend. We had spent the whole week planning for this weekend.

We were going to have a 15th Birthday party for Kirsty. Chocolate Fountain and Mocktails in the garden as her friends arrive, lots of singing, dancing, and games in the garden before they had Jacket Potatoes, Chips, Pizzas followed by the Ice Cream Bar. Melissa and I had baked the 'perfect' chocolate cake for Kirsty. It was all working out perfectly.

The week before we sat on a beach on the North East Coast of Scotland . The weather, the sights and the food was all great. I still remember saying to the girls, "remember this moment when we get home and we have a difficult day. Think of this beautiful moment to keep us happy".
Kirsty has Down Syndrome. She was just about to go into Year 11, we were thinking about her future, how do we prepare her for Post 16 Education, how do we help her build her independence, how do we help her achieve her dreams to be a dancer, singer, actor, an athlete who would one day be part of the Special Olympics and to work as a receptionist in her favourite hotel, Premier Inn?

Dr Janet Chelliah was deputy medical director at the Special Olympics held in Sheffield, August 2017

Our lives as a family, our dreams and most of all my teenage daughter's life came crashing before us...why, why why??
We have had a horrible year, probably another blog to tell you about it.

Our lives have changed. our priorities have changed , my younger girl Melissa has seen and experienced more than any 9 year old should experience, but most of all Kirsty's life came to a hold for almost a year.

One year on today...our family life hasn't got back to how it was. However there have been some happy moments. Kirsty celebrated her 16th birthday this week, she attended her school prom, she is walking more and using her wheelchair less than she did, she uses a trike, she has started singing and drama lessons, she is starting to attend her dance classes, she has a different hairstyle as her hair grows back, we managed to travel out to a caravan park, she has made new friends ,she has been shown how much she is special and loved by the many wonderful family and friends we have and, most of all, her beautiful smile and fantastic personality and sense of humours is shining through.
Kirsty has a long journey ahead of her. She remains on chemotheraphy till 2019 followed by monthly blood tests for a few years. I pray and hope she will soon catch up with the last year that put her life on hold.

Thank you to our family and friends who have continued to show their much needed love and support. I wish I could name you all here and thank you personally but I will just have too much to say.
A very special thank you to my sister Jane, who has encouraged me to put my thoughts in this blog and has been a great support.

1 comment

  1. It must have been hard to write but well worth it. Such a difficult story to tell with a positive outcome. Well done all of you. A difficult year but you got through it together