I recently went to a festival in honour of 9-year old Matthew, who had recently received his cancer-free diagnosis after 4 long years of treatment. For his mum, Sarah, front and centre during the dancing in a 100% gold sequin jumpsuit, the sheer relief of remission was written all over her face. Bar the obligatory summer festival down pour, it was a joyful, fun occasion.
Matthew is one of the lucky ones.
Of those that survive, many will experience side-effects for the rest of their lives. Whilst it is wonderful that so many lives can be saved, we hear very little about life after childhood cancer.
A few years ago, through our work with Acorns in the Black Country, we met 12-year old Heavenly and her mum Kelly. Heavenly wasn’t born with disabilities. She was always causing mischief with a twinkle in her eye, and was never afraid to speak her mind. When she was just six years old she was diagnosed with cancer.
During an operation to remove a tumour from her brain, she had a stroke which robbed her of the use of her limbs on her right side, her ability to swallow, the vision in her right eye, and her speech. She was put in a coma for six weeks and the family were told she might never wake up, or that she might be paralysed from the neck down.
Kelly told us:
“When she woke up she had eight months of intensive chemotherapy and radiotherapy. It made her so poorly, and sometimes we questioned whether it was worth putting her through so much pain, but in early 2011 she had beaten cancer!”
For Kelly and Heavenly, such were the complications from major surgery and her treatment, beating cancer was not the end of the story.
“We finally thought our lives could return to some form of normality, even with a few new complications, but the intensive treatment had created yet another challenge for my little girl to deal with – Poiklothermia.” Kelly recalls.
There are only seven recorded cases of this rare condition in the UK. Heavenly’s brain cannot control her temperature, so she lives with severe hypothermia every single day of her life.
She is housebound during winter time and cannot go to school for most of the year because maintaining her temperature is a constant battle.
The biggest complication for Kelly was losing the ability to communicate effectively with her daughter.
“We tried lots of different aids, but none worked. It was heart-breaking to see the effect that this had on her confidence, she was a completely different child and we didn’t know what to do.”
That was until Heavenly and Kelly got their hands on an iPad, which Lifelites had donated to Acorns.
“It might seem strange that a tablet could have such a huge impact, but it really has changed her life.
She could tell me that she wanted cereal for breakfast instead of toast (which is boring apparently!) She could tell me that she wanted to wear pink instead of her green jumper. She relies on it so heavily just to get her through the day.
It gave her a voice, the one she so desperately wanted and deserved.”
Across all of the range of conditions we see through our work, this concept of disempowerment and feeling voiceless comes out time and time again. As does an underlying sense of feeling forgotten about but for the small and dedicated world of children’s palliative care staff and volunteers.
It’s so important that stories like Heavenly’s get told.
As we raise awareness about childhood cancer throughout September, I think it’s critical that, for every cancer-free festival and sequin jumpsuit we celebrate, we must ensure that there is an ongoing package of support in place to help all those children and families who are struggling with life after cancer, and continue to give them a voice.