Chenoa’s NF Story

Chenoa’s NF Story

Chenoa’s NF Story

When ten year-old Chenoa was born, her parents Wayne and Joy knew the chances of her having NF1 would be more than likely with Joy having the condition herself, but her parents did not expect the long road that followed, or to hear that due to complications they faced the very real possibility that their daughter would never speak again.

Chenoa was officially diagnosed with NF1 at two years old but did not begin to show any signs of serious complications until mid-2007. Chenoa developed a nagging cough and her parents noticed her breathing had become laboured while asleep. Doctors prescribed medication for tonsillitis and asthma-like symptoms, and it wasn’t until Chenoa was taken to the hospital suffering from an asthma attack in 2010 that tests revealed a lump growing in her chest cavity area. A CT scan showed a large tumour just below her voice box that intertwined with her heart, left lung and major vessels.

At this point every parent’s worst nightmare started to come true. Doctors advised Joy to pack her bags and prepare to be flown to Brisbane on a Royal Flying Doctors flight. “We can’t risk her being on a commercial flight,” Joy recalls the doctors saying to her. The family was in Brisbane within days of the mass being found and were signing consent forms for major, life-threatening surgery.

Chenoa had to undergo a permanent tracheotomy, a surgical procedure to create an opening through the neck straight to the trachea (windpipe), as due to the tumour the airway from her left lung had become smaller than the opening of a straw.

“Doctors told us there was a 90 per-cent chance Chenoa would never speak again, but that surgery was necessary to save her life” Joy recalls.

But Chenoa was a fighter and was determined to defy the odds.

“Three, four weeks passed and she [Chenoa] still couldn’t speak,” says Joy. “But one morning we took her to the hospital for a check-up and out of nowhere she looked at me and said, ‘Good morning Mummy’. It was incredible. We phoned her dad and he was in tears, wishing he could have been there.”

It has now been four years since Chenoa underwent the life-changing surgery. She attends her local primary school with dad Wayne by her side in case the tracheotomy tube comes out, and has plenty of friends and supporters, but challenges are far from few. For Chenoa, swimming lessons are not an option because of the possibility that water will enter her airways and cause her to drown. Great care has to be taken with where she plays as it is crucial she doesn’t get sand or dirt in the area, and her heart capacity causes her to tire quickly, meaning she is unable to play catch and tag with her friends.

The tumour also remains a constant concern for her family. Because of where the tumour is located, and the fact that it is wrapped around her heart and lungs, surgery to remove the growth is not and can never be an option for Chenoa. Thankfully the tumour has remained stable over the last couple of years. Doctors have suggested trialling a chemotherapy drug, but while stable have decided the best option is to wait and watch.

Challenges aside, Chenoa remains a vibrant young girl full of courage, and is surrounded by loving family members who always make sure she enjoys life to the fullest.

“It has been a long journey,” says Joy. “My biggest fear is waking up and her not waking up. At the moment, as long as we can get her through to adulthood, we’ll be fine.”