After a few tough years with Josh’s CF diagnosis, his gut / sleep issues and COVID the Williams/Walker family decided to take a leap of faith and travel our gorgeous country in their caravan.
Their travels have been documented on their Facebook page Wandering with the Williwalkers.
Here is one of their posts on managing CF while travelling around Australia.
Had you asked us when Josh was diagnosed with Cystic Fibrosis at 5 weeks old whether we would be able to travel Australia with him we probably would have cried. The life we pictured had crumbled in front of us to the point we didn’t even know if we could still go camping with him.
Fast forward to today, Josh is 4yrs old and living his best life which included spending 8 months doing a half lap of Australia in 2022. He spent his days on new beach each week, climbing rocks, making monster truck tracks in the reddest of dirt and swimming most days.
We were apprehensive when we spoke with Josh’s clinic 8mths out from leaving that they would be supportive and how it would work. We had no issues however and everyone in his team (Doctors, Nurses, Dietician, Social worker, Physiotherapist and Gastroenterologist) were so supportive.
COVID had made way for online clinics which we could access anywhere in Australia.
We timed leaving with his annual review to allow us to leave knowing he was well and give us 12mths before having to be back in Perth for the next one. Josh has a Bronchoscopy, bloods taken and CT scan under general anaesthetic to look at his lungs and test for bacteria (along with other testing) each year. This year (his 4th) was the first bronchoscopy that showed he had grown Strep and Staph both needing treatment as well as some damage that needed a new nebulised treatment. To be honest the timing couldn’t have been better or worse in that even though it was great to have it sorted before we left, it included weeks of fighting Josh over the new nebuliser which he didn’t love all while stressed from trying to pack up our life. I wasn’t a very nice mumma or wife during a lot of time over those weeks. We were so grateful to get it sorted before we left though.
We were able to get 6mths of most of his scripts filled before we left. Our concern was that it would be hard to access it when on the road so wanted it with us. Due to a short shelf life we could only get 4mths of his salt solution but we were able to easily get another 3mths worth sent to Broome for us to collect (then another lot sent to Ben’s Dad in Perth who sent them to Port Augusta for us (PCH don’t send out of state).
His meds stay in a freezer type bag under our bed. We have cooler bricks to keep it cooler than 25 degrees however only used them for a few weeks in the NT on travel days. Most of the time the van is perfect temp.
Twice daily Josh has his Physio which includes Ventolin followed by 10 minutes of nebulised Hypertonic Saline then 15 minutes of PEP (a breathing exercise so to speak). This is a non negotiable to ensure the best lung health and to keep routine however there can be times where it can be missed (though we try to limit that). We luckily had installed the inverter for the coffee machine that runs the nebuliser off our solar while off grid.
We have had 2 “Telehealth” phone calls for clinic over our trip so far to check in with how Josh is going. We are very lucky that he has stayed well while on the road.
Josh has been his healthiest on the trip. He got tonsillitis just after we left where we needed antibiotics but that was easy to do over the phone to our GP. We did get the dreaded COVID in Exmouth that we had been worried about for 2 years! He had a temp and vomiting for 48hrs then a minor cough for a couple of weeks but really breezed through it. He had 2 minor colds which we picked up seeing friends. Compared to friends at home we had a great 6 or so months avoiding the winter.
We sterilise all Josh’s physio equipment after each use the same as home, we wash in hot soapy water, rinse in boiling water and then air dry. Once a week we boil everything for 10 minutes. The biggest issues with physio was with the lure of doing fun stuff outside being stronger than physio, having to time it around travel days and activities and Josh feeling more like he was missing out with other travel families around than he would at home. We only had one slight freak out where we thought we had lost the PEP mask in the remote WA outback after doing some physio in the car one day (it was tucked under the seat), that was the last time we took anything physio related out of the caravan.
One MAJOR risk factor for people with Cystic Fibrosis is Pseudomonas, water borne bacteria that can do damage to the lungs. We have spent Josh’s whole life trying to avoid them, no bath toys that can get water in, no water pistols, no drink fountains, no spa baths, no old hay, no spray bottles with water at the hair dresser, toilet lids shut always, no bird baths, only certain water bottles…
The trip has included many, many times where I’ve been concerned about Pseudomonas such as the hot springs in the NT, every caravan park bathroom 🙈, swimming pools in caravan parks, the quality of the “potable” water especially in the top of Australia where it was often bore or river water but in the end it was probably no different to how cautious we are at home. We did feel like we were opening him up to more chance of exposure but he was living his absolute best life so to us the reward outweighed the risks. We didn’t want to say no to a lot then go home and him get pseudos from getting squirted by a water pistol. We did still do the same as home and avoided the usuals like spas and a Butterfly house, there was one water body near one campsite near Tom Price that we choose to not let him play / swim in due to being the end of the season.
One other concern is that people with CF are at risk of cross infection, people with CF aren’t recommended to be within 5 feet. Looking at Josh you would never know he has CF. At home we know 90% of the local people with CF and avoid them! On the road, the risk is real that he could be playing with a child who also has CF. The risk is very low but it’s always on our mind.
Josh was affected by the weather in the Northern Territory only. There was two weeks where the temperature really heated up and was draining on us all. Josh was trying to keep up his usual outdoors fun which just took all he had, even with extra salt and hydration he was exhausted. This was only a short period of unprecedented hot weather before we headed south but it would be definitely something we took into consideration when planning other trips.
After 8mths traveling the family decided it was time to go home, Josh’s older siblings (12 and 14yrs) were really craving school, sport, mates and a bedroom so the call was made to return home before Christmas. Josh probably loved the trip the most of any of us, he had all his favourite people together in amazing locations doing fun things (without the school work and parental responsibilities 😆).
We were so pleasantly surprised that Josh’s annual bronchoscopy in February showed no infections of any sort, I think we had really thought he would have picked up Pseudomonas on the trip. His lungs looked great and Doctors suggested we should continue doing what we had done for the last 12mths (if only we could convince the teens that caravan life is best 🤭).
Camping and traveling in a caravan will definitely be something we continue to do and encourage other families with Cystic Fibrosis to do. The trip really was a magic time with memories that will last us forever.
