Our perfect little girl was born on May Day in 2008. We called her Daisy and delighted in her progress. As she got older, she was falling a lot at nursery – we weren’t worried, at two years old, most toddlers are unsteady.
Then the sickness started. At 3-4am every night, she would vomit. I couldn’t understand why, and kept going to the GP. We were utterly exhausted, we both work full time, have long commutes and we had a child who wouldn’t sleep – ever.
After a week, we went to A&E. The paediatrician gave Daisy a CT scan and found a large tumour in the cerebellum, the base of her brain. We were transferred to Birmingham Childrens Hospital, and she underwent a major operation to remove the tumour a few days later.
The surgeons were unable to remove all of the tumour as it was too entwined around the nerves controlling heart rate. They tried and her heart rate dropped dangerously low, twice. An MRI scan also showed that there was a secondary tumour near the pituitary gland. Surgical removal of this would have caused too much damage to other brain structures, so it was decided to treat with chemo- or radio- therapy.
We were devastated to learn that not removing 100% of the tumour, plus discovery of a secondary tumour, plus the fact that Daisy was only 2.5 years old at diagnosis unfortunately all reduce her chances of survival.
Nothing had prepared us for what followed. She woke up with a very bad squint and a face that was paralysed down one side. Her balance was so bad she couldn’t even sit up and she was sick constantly. We were distraught. It took 12 weeks to recover enough for chemotherapy. She also contracted meningitis. It was the worst time of our lives and absolutely terrifying. We were glad to get to the cancer ward!
Chemo started January 2011. It was grim, painful and very distressing. MRIs at this time showed improvements in the tumour. Sadly at the end of the course, some tumour still remained so radiation was unavoidable.
She had 33 doses of radiation to the head and spine, and 56 to the tumour bed. We were devastated.
Two years on, she is tumour-free. Is this good news? Yes of course, but cancer and treatment have left Daisy with blurred vision in one eye, deaf in both ears, permanently bald at the back of her head, with a facial paralysis. She is also expected to develop more slowly than normal.
My hope for the future is that there will be some investment in the reversal of side effects as well as treating the disease. Cancer is devastating in so many ways. Unfortunately for children it is worse.
I also hope one day to recover myself from the trauma – I still get flashbacks to the neuro ward. However, when it gets too much we remind ourselves of parents of who lost their precious children and try to tell ourselves we are lucky so far. We hope one day to feel lucky, and stop pretending!
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