Joe’s story

Posted by admin on July 3, 2014

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Joe benefitted from the kind of clinical trial the Future Fund aims to run to improve cancer treatments for children and young people.

Joe benefitted from the kind of clinical trial the Future Fund aims to run to improve cancer treatments for children and young people.

“Strangely enough, the part I found the hardest was going home. The hospital had become our home and the people in it became our family.” 

News that her son Joe was in remission brought to a close more than a year of heartache and torment for Carla Johnson, who watched her child transformed almost overnight by cancer from a healthy three-year-old to being on the brink of death. It wasn’t until Joe was discharged from the Great North Children’s Hospital however, that the impact of their ordeal really hit Carla.

She adds: “There was comfort in the fact that everyone at the hospital understood what we were going through.  They were our back-up. They were quite literally our lifeline. I had powered through the initial stages and kept it together but reality hit when we left our protective bubble.

“During the experience we had met so many families going through similar things and it broke my heart that their stories hadn’t all ended the way ours has. You see it and it almost became normal but you never get used to it and it’s the same for the staff. I’ve seen ambulance drivers break down in tears because they’ve taken a child home to die. I found it incredibly difficult to adjust to ordinary life after that kind of experience.”

This difficult chapter in their lives began in August 2008 when Carla noticed three year-old Joe was becoming frequently tired and had started to lose weight. When she found a lump in his side she feared the worst.

Doctors at the Great North Children’s Hospital confirmed Joe was suffering from childhood cancer neuroblastoma and a tumour had developed and wrapped around his kidney. The cancer spread to his adrenal gland and down his legs and Carla was warned his chances of survival were not very good.

“At first I wouldn’t let the doctors call it a tumour, I asked them to say lump because I couldn’t bear to hear the word,” Carla says.

“In the space of a few days he went from having a normal life to starting the first of many intensive treatments. Joe had a very high risk cancer so he had to have incredibly intensive treatments. He had a reaction to one dose of chemotherapy and his liver started to back up. He was taken to intensive care and I was told that night to prepare myself because I was probably going to lose my son.

“I don’t have any words to describe how that felt. A lot of it is just a haze now. I remember being virtually carried around the hospital because I think I was in shock. I remember standing outside the hospital in the pouring rain with no shoes on. Moments are burned into my memory, like when Joe asked me how old he’d be next year and I honestly didn’t know if he’d be there to see it. You live in hope that it won’t be as bad as they fear but it Joe’s case it was the worst.”

Joe’s health began to improve when he was put forward for a clinical trial run by the Northern Institute for Cancer Research at Newcastle University which investigated the treatment of neuroblastoma with the drug 13-cis-retinoic acid, which plays a key role in preventing the cancer from returning following surgery, chemotherapy and radiotherapy. He became stronger and stronger until news of his remission was finally announced.

November this year will mark Joe’s fifth anniversary of his remission and Carla says her family is once again looking forwards, with nine-year-old Joe making lots of plans for how to celebrate the milestone.

“He’s always changing his mind about what he wants to do and is expecting all kinds of presents,” Carla laughs. “He is a normal, happy boy now who loves his computer games and his Xbox. We are so incredibly close and have a very special bond because I’ve seen him go through so much and I’ll never stop asking why it had to happen to my boy.

“I should have a tree strapped to my back because I need to touch wood so often! People are always asking how Joe is and I’m always saying, ‘he’s okay, touch wood!’

“Something like this makes you realise how important family is. It gives you a real sense of perspective. I no longer waste time worrying about some things that used to really bother me. There’s just no point – life really is too short and too precious. It makes me sad that my daughter Gabbi essentially lost her mum for two years but we are all back together and that’s what counts now.

“By bringing all of the experts together under one roof the Future Fund will mean more families have an ending to their cancer story like ours.”

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