There is no Parents’ Handbook when a child has cancer.
But parents need as much encouragement, understanding and the same inspiration in helping their child re-build their lives from the ashes of cancer as that young person themselves.
Daisy, from Dorset, was 14 when she was diagnosed with Hodgkins Lymphoma.
Her parents Stuart and Triff tell their story...
Daisy had got weaker, slower, more lethargic and thinner. No one could explain why our daughter was disappearing. Glandular fever, ME, Limes Disease, anaemia, growing pains. As she became physically weaker she began to retreat emotionally from her friends and her isolation became more entrenched.
Daisy tried everything, she even felt guilty! Every night became a tearful, sleepless rollercoaster of emotions. We would wake the next morning exhausted, still no closer to an answer.
Eventually our nemesis had a name – CANCER.
At last we had something to blame and fight against. For six months Daisy underwent intensive chemotherapy. Regular trips to the Royal Marsden, where radioactive poison was pumped directly into her heart for two hours, were punctuated by local hospital visits for additional medication and blood tests, and a cocktail of daily drugs prescribed to counteract the chemo side effects.
Daisy lost her hair and fingernails, and her mouth was full of ulcers. The arches in her feet collapsed and she had difficulty walking.
For half this time she also had no means of fighting even the smallest of infections.
At a time you’re supposed to be protecting and nurturing your child, you’re stuck, paralysed by fear and helplessness. You immerse yourself in arranging hospital visits, monitoring drug regimes and blood tests because, ultimately, all you can do is wait.
How do you explain to your teenage girl losing her hair is a sign the treatment is working?
Imagine what it’s like to help your daughter shave her head and do it without crying.
As a parent, what advice can you give your child, and how can you blame them when they no longer want to go out?
But where do you start?
The doctors had worked their magic and Daisy was alive but somehow we needed to rediscover our little girl. Daisy had been ill for so long, and experienced so much, we weren’t sure where to begin.
One day Daisy received a letter; would she like to go on a sailing jaunt around the Isle of Wight? I think my seasickness had coloured Daisy’s view of the sea! Plus did she want to spend a week with other cancer survivors?
Would it be a positive experience or revive painful memories? Should she try and put that behind her and move on?
As we read the literature and spoke with the nurses it became evident the Trust was something special and could make a difference.
This was the first time the family would be separated since Daisy got the all clear and we shed a few tears standing at the quayside.
During the next four days, short text messages and rushed phone calls suggested Daisy was having a ball. When we picked her up, all the young people were laughing and joking and teasing their shipmates.
The relief was palpable as tears of joy flowed from men and women alike. They were kids again, enjoying themselves amongst equals.
Her crewmates were great; they compared treatments, experiences and even the length of their scars! There were others just like her and they were all getting on with life.
Whatever magic Ellen and her team employed it had a dramatic effect. Daisy learnt it was ok to have fun and laugh. That cancer wasn’t a punishment, it did not consciously choose its targets and there was no place for guilt.
She had learnt to sail. If she could do this what else could she achieve? She regained her confidence and sense of purpose.
She returned to school as an equal.
Daisy was invited to join the Trust on its Round Britain challenge in 2009.
Following an eventful crossing of the Bristol Channel, we were woken by a 6am phone call. Not sure what to expect, we listened intently as in hushed tones Daisy described how she was responsible for making sure the yacht wasn’t run down by a tanker and she was watching the sunrise surrounded by a school of dolphins.
We cried tears of joy.
The fight is all consuming, and the Trust’s work is so important in rebuilding the entire family unit.
I’ve looked around the quayside and watched other families, who like us had been ripped apart by cancer, rediscovering and reconnecting with their children.
We all have a lot more to be grateful to the Trust for than just the rehabilitation of our children.