We’ve overcome many challenges this year but none more difficult than the one Tashi faced in Cairns.
As we headed across the Outback from Katherine to Queensland, Tashi begun to exhibit a range of seemingly unrelated but debilitating symptoms that were evidence of something being ‘not quite right’. I made a GP appointment for her in Cairns but was underwhelmed by the doctor’s complete lack of concern so decided to take her to the Emergency Department at Mareeba Hospital the following morning. They immediately identified she needed urgent care, which they were unable to offer at their small regional facility. She was transferred to Cairns Base Hospital, where, after loads of tests and advice from experts across the country, she was diagnosed with a serious auto immune disease. She spent 10 days in the paediatric ward until she was stabilized enough to fly home to Melbourne for further treatment with a specialist team at the Royal Children’s Hospital.
The days prior to the formal diagnosis were difficult and distressing for everyone as her condition continued to deteriorate at an alarming speed. However, once treatment finally commenced, Tashi responded positively and her condition rapidly improved. The paediatricians in Cairns were careful to warn us that no two cases are alike and that people’s responses to treatment vary considerably. We know we will have to be patient with her ongoing recovery as her body learns to adapt to the changes.
Tashi and I flew home with the dogs the day she was discharged. We had no idea what lay ahead for us at that stage so Michael planned to bring the camper home with Gemma and Jesse as quickly as possible. It was clearly not the ending we’d expected but Tashi’s health was paramount.
We saw the Melbourne specialists two days after arriving home and were immediately impressed with their openness, optimism and support. Whilst they confirmed Tasha’s next few months would be peppered with regular medical interventions, they were confident the worst was over. The condition has no cure and they don’t know what causes it, but management techniques are generally quite successful; it will just take time to get a medication regime that suits her individual symptoms.
The Melbourne team knew our story before we arrived, even telling Tasha she was ‘a bit famous’ around the Department! The Rheumatologist had been consulted whilst we were still in Cairns and was instrumental in the early stages of diagnosis and treatment. With our ‘special’ travel circumstances in mind, the doctors were keen to try and develop a plan that could accommodate both Tashi’s medical needs and get us back up north to complete the trip, albeit in a truncated timeline. This was genuinely unexpected and but also exciting and quite emotional. They made it clear they didn’t want her going anywhere for a month or so when her needs were highest, and suggested we didn’t do any more remote travel just yet. But, if we stayed along the populated east coast with tertiary hospitals close by, they were confident we could make it work. She’d need a bunch more tests and consults in the ensuing weeks but if everything continued to improve, we could look at rejoining the rest of the family after that. It would need them to use their professional networks in other hospitals and for us take a leap of faith in the connectedness of our health system. Despite the unknowns, we were buoyed by the possibilities.
We decided to stay hopeful and Michael slowed his southbound travels so that if things went to plan, we could return to a location somewhere warm and which still had a tropical, holiday feel! Persistent unseasonal rain in far north Queensland tested his resolve a little, but if we were to be given the opportunity of finishing the trip together AND give the kids a much anticipated trip to the Gold Coast theme parks, dodgy weather for a few weeks would be inconsequential.
So, what's the latest??
With little more than hope, I made advanced bookings for flights to Rockhampton for the day after her tests and appointments on the forth week back in Melbourne. With great relief and excitement, the doctors gave us the go ahead during that consult. We had to negotiate a cancelled flight and a rushed connection in Brisbane but we finally arrived in Rockhampton after nearly a month away from the Sunshine State. Despite the fact Tashi is feeling much better and her symptoms have significantly reduced, the medicos sent us away with strong advice about the fragility of her health and the need to be careful with our scheduled activities. We know there is still a way to go before everything stabilises completely. We are taking it a day at a time and staying optimistic. She will need treatment during our travels back to Melbourne but with modern communication mediums and easy access to pathology in major centres, we hope you join us in crossing your fingers and toes that everything goes well.
It's funny (in a curious way) what you learn about people when they're faced with adversity. Tashi has been so brave and has displayed incredible maturity beyond her years from the very beginning. Her resilience and adaptability have been inspiring; even impressing the doctors. She will certainly not be alone as she embarks on this new journey of uncertainty and unknowns but she will draw on her own strengths to embrace the changes courageously and not allow the diagnosis to interfere with her aspirations and dreams. We are so proud of her.
Photos from left to right
Tashi with 'Mojo' - the 'care' bear my brother sent to her in hospital. It was VERY warmly received!
surrounded by machines and tubes - the technology was incredible
The view over Cairns beach from the hospital playground, which was just outside Tashi's room - not bad!
At Cairns airport before Tashi, the dogs and I flew back to Melbourne