In Jan 2012, our lives were turned upside down when our 12 year-old daughter Niamh was diagnosed with a rare type of cancer on the base of her spine (an undifferentiated sarcoma). All childhood cancers are rare, but this is a particularly rare form of tumour. Treatment initially began with a 7 hour emergency spinal operation to prevent what was becoming serious nerve damage to the lower part of her body. She has ongoing physiotherapy to help overcome the difficulties she developed. She has so far had a number of cycles of chemotherapy at the Royal Hospital for Sick Children in Edinburgh, and our next step is hopefully Proton Therapy in Florida.
Proton Therapy is highly expensive and unavailable in the UK. It differs from conventional radiotherapy by being more targetted on the tumour thus minimising damage to surrounding healthy tissue. Niamh's tumour is located very close to the spinal cord and so stands to sustain long term effects on that area through UK radiotherapy. She may get damage to her spine, bladder, bowels and ovaries. We have been offered Proton Therapy (subject to approval) in Jacksonville, Florida which will mean relocating our family there for 9 weeks this summer.
The NHS (thank goodness for
them) will fund most of this trip but not all. We want to make Niamh's
stay out there as comfortable as possible and also achieve her dream of
swimming with dolphins. To do this we need to raise money and we don't
have that much time. We have set a minimum target of £17,000 but hope to raise more than that.
We are likely to be going in mid July 2012, and any unused funds will be donated to children's cancer charities.
We've started a blog detailing our cancer journey, which you can read HERE.