Katy After Diagnosis
We were told that Katy’s only option was to have 30 fractions of cranial radiotherapy and then she might have between 6-9 months to live. The grief was unbearable. We chose not to tell her. Katy had her treatment over 6 weeks but over the next 3 months Katy’s condition deteriorated quickly. We were told to say goodbye 3 times to her, the first time was only 2 weeks after diagnosis when she contracted pneumonia.
This meant Charley knew the truth about her sister, we had no choice but to tell her. Each time Katy pulled through and we were filled with hope that she could beat this. Charley never told Katy throughout the illness how seriously ill she was. Such a cruel burden.
Katy missed her wish, arranged through the Make-a-Wish Foundation, because we nearly lost her when she started fitting as we loaded the car. Katy also missed her holiday to Scotland as again she fell ill as we were packing and we nearly lost her again. Perhaps the excitement was too much. Katy was in and out of hospital and the hospice, she remained so polite and thoughtful throughout. Katy lost the ability to swallow, see, hear, feel, use her legs, use her arms, move, go to the toilet, in fact by the end she had lost the ability to do everything, even blinking to communicate. Katy never lost her mind though. That was the cruellest thing of all.
We searched all over the world for different treatments available but every time we reached a dead end. The community fundraised to fulfil her wish-list but Katy continued to deteriorate and never got to do much. My baby was induced 2 weeks early as my waters had been slowly breaking for weeks plus we wanted Katy to meet her before it was too late. We made it past Christmas and then New Year.
Finally, after a long, hard battle, Katy’s body gave up. She died peacefully in a big double bed with Dave and I cuddled up to her holding each hand. All the time her favourite Disney CD was playing. It was very peaceful. She died at 1am on the 19th January 2012.
Katy had a funeral fit for a princess. She was pulled in a silver carriage by white horses. We had a Disney theme. Everyone wore something Disney and brought a Disney balloon with a message attached to it. We released them altogether. 30 Huskies came to send her off and they howled as we arrived. Katy had a full Requiem Mass which was attended by over 300 people.
We miss Katy so much. I refuse to let her passing be in vain. We are told this tumour is rare. I refuse to believe it. There are too many children dying from this everywhere. We intend to raise awareness of this evil monster and raise funds to send to those people who are doing research into paediatric brain tumours.Hopefully we can make a difference and more importantly find the cure.