The mother of a little boy with a rare form of cancer has made the agonizing decision to stop treatment so that her son’s final days can be filled with fun and laughter.
Joshua Ginns, 10, of the U.K., had an ependymoma diagnosed six years ago and has had to undergo a catalogue of intense treatment including surgery and chemotherapy. But doctors could not remove the tumor entirely, despite their best efforts over a number of years.
Now Clare and Andrew Ginns, who have divorced, have decided that their son should no longer endure painful procedures and lengthy hospital stays.
Clare Ginns, 41, said: “I have been making this decision for a long, long time. We have always known that one day it may come to this.
“We had a meeting with doctors and both Andrew and I decided there and then that we would take the opportunity to tell them we were not doing anything else. There were a lot of tears, but it’s not a way to live a life.”
A tumor the size of a tennis ball was discovered in May 2002. By November the cancer had spread down his spinal cord and Joshua was given only six months to live. Joshua lives with his mother and six-year-old brother, Thomas, in Borrowash, near Derby in the U.K.
Ginns said: “Joshua was a very outgoing and friendly little boy. Everyone wanted to play with Joshua. He was a very popular little boy at playgroup. And then, all of a sudden, he turned into a recluse and was very tired. He was being sick every morning. It was totally out of character.”
Ginns said that doctors failed at first to diagnose the tumor, a type of glioma that attacks the brain and spinal cord, but that her persistence had helped to persuade them to carry out more tests. She added: “If you have got a (sick) child and you know in your heart of hearts something is wrong just keeping knocking on doors. He was not born with it. He was a perfectly normal, average 4-year-old.”
After chemotherapy, Joshua lost his hair and was prone to bouts of vomiting and diarrhoea. He has also undergone radiotherapy and three brain operations. After each surgery a small part of the rare brain tumor remained and grew.
The last surgical procedure, last August, confined him to hospital for nearly five months. In addition, the procedure at Queen’s Medical Centre in Nottingham led to complications and Joshua needed a tracheotomy to help his breathing and a procedure to allow liquid nutrients to be fed directly into his stomach. During his last stay, Joshua contracted MRSA and had to spend much of his time in isolation, unable to meet and play with other children or attend the hospital school.
The rare syndrome has caused inflammation within Joshua’s spinal cord, leaving him with no pelvic strength and unable to walk.
Now his parents want him to spend his remaining precious years on holiday, at school or playing with friends, instead of inside a hospital. Their first plan is to visit Disneyland in Florida — a holiday that has twice been planned and twice cancelled because of Joshua’s treatments and appointments.