“Our ‘hospital medical journey’ began in February 2016. So I guess you could say we are ‘freshly diagnosed’. Prior to his diagnosis, Kase was generally well. He spent a week in hospital at 4 months old being treated for pneumonia, but outside of this he also presented throughout the first nine years of his life with what seemed like a ‘common cold’, and he produced mucus like any other child.
Winters over the years were definitely a trying time for Kase but with the help of antibiotics we managed to get by. It wasn’t until November/December 2015 when his ‘cold’ just didn’t seem to go away, even in the summer despite many antibiotic trials. He just didn’t seem himself. He was even opting to lie around the house after school instead of being outside kicking his rugby ball around like normal.
My instincts told me that something was definitely not right. Then, one particular morning Kase coughed up a very large amount of mucus up after a coughing fit which I took a picture of and showed our GP. That prompted our GP to send a request to the hospital. We were once again placed on a month of antibiotics, but meantime a doctor at the hospital read Kase’s file in its entirety.
He rang us and discussed that Kase would undergo a battery of tests for two weeks in hospital and they were concerned that his symptoms were leaning towards cystic fibrosis. Regretfully, I searched cystic fibrosis on google and understandably felt terrified that Kase may have this incurable disease. Within two days he was diagnosed. That was the day our lives changed forever.
‘Numb’, ‘helpless’, ‘confused’ are words that describe how we felt as the doctor described what our son had. We next had to inform Kase of this incurable disease that had decided to challenge him and us as a family.
Kase took the news well but he could tell from our faces that what they were telling him had obviously upset us and his little face looked helpless.
I just remember him grabbing my hand and rubbing it and all I could think about what how much this gorgeous little boy’s life was about to change.
We spent the next four weeks in hospital being inundated with paperwork, social worker visits, and watched as Kase’s body was poked and prodded.
There was so much to take in and yes I wanted to crawl up in a ball and just stare out the window but what good would that have done. So many people visited, offering words of support and often suggested that this sort of thing happens to ‘strong people’ because they can handle it. All I remember thinking is “We don’t want to be those ‘strong people’. Don’t pick us! This is one time we’d rather be weak! However, there was no time for weakness and we had to be optimistic.
I spent time in hospital instead finding out what we needed to do to ensure that we could provide the best care for Kase at home and prolong this illness from debilitating our son.
One bonus, and something that made it slightly easier was that we had brought our son up with a love of sport and exercise. This definitely worked in our favour. CFers need to be as active as possible (to stir up the mucus in their lungs to get it out so bugs don’t have a warm and cushy spot to grow). So it was definitely great that we didn’t have to turn a ‘gamer’ kid into a ‘sporty kid’. After four weeks in hospital over February 2016, we were sent home. Kase’s lungs had had a major tune up and he was gagging to get back to his buddies, team mates and back on the field. I couldn’t believe the difference when he played his first game back. He was like a ‘pocket rocket’. It was then that I realised that he really was quite unwell before (despite looking pretty normal).
Day by day it’s hard not to worry. Life is definitely different now. Yes, sometimes Kase doesn’t take his creon tablets and yes sometimes he’s a pain getting on his nebulizer morning and night. What I have to remember is, he’s a 10 year old boy.
Kase has had to take on board so many new changes that have affected him either physically, mentally, emotionally, socially and spiritually. Going to a friends house is now more of a chore as he has to take his nebuliser, needles, saline, and creon tablets. He has to make sure that when he’s there he eats fatty, salty and sugary food, and there’s some activities like swimming that he has to think twice about. But the little champion has taken it all in his stride.
I sit in awe sometimes and stare at him growing prouder by the minute. It’s hard not to worry about the future. He knows enough to get by for now, but I’m waiting for the day when he visits Doctor Google or someone at school lets him know that premature death is unfortunately associated with CF. We are as prepared as we can be for these moments with resources ready to help and support him. However, we want to be the one to share this news. But when’s the right time? I struggle with this! It’s imperative though, that it comes from us.
There are many families out there who are living with children that have these nasty illnesses/conditions that consume our time, energy and sometimes zap us of our ‘being’. It’s hard, it’s exhausting and it’s soul destroying. But you just have to push on!
Sometimes I go through stages where I’m positive and think, well he’s got to 9 years old without being extremely ill so that’s got to be a good thing. Maybe he’s dodged a big bullet and he has a real mild case of CF. But then he’ll get a bug, start coughing up phlegm and my positive thoughts dwindle.
Due to Kase’s late diagnosis they are unsure how things are going to play out. There are days where I wish we were back when he was four months with pneumonia and we persisted more to have him checked out. However, would it have been better to know then he had CF? Would we have wrapped him in cotton wool and then he may not have become this sporty, adventurous kid who loves life? It’s hard to know. At present there is no cure for CF, but the affected gene has been identified and researchers are working to find ways to repair or replace it, and medications to treat CF complications. Thanks to Cure Kids we have hope! Thanks to Cure Kids we can be optimistic! Thanks to Cure Kids we can see light at the end of the tunnel!”
Cure Kids, in partnership with Cystic Fibrosis NZ are proudly support Dr Cass Byrnes and her team, who are developing ‘BreatheHero’ a tablet-based game to make chest physiotherapy for cystic fibrosis patients fun.
Research shows that the compliance level for therapy among children and adolescents was only 49 per cent. Among all cystic fibrosis patients it was about 25 per cent.
BreatheHero will have a significant positive impact on supporting children to adhere to their therapy, to improve their daily lives, and decrease their infection rates and hospital admissions.