So this is where we’re at… embarking on an even steeper uphill trek in this epic cancer battle but this time, even further from home, with no one there yet known to us. We’re ever so grateful and deeply thankful that we have the opportunity to keep battling for Ned’s life, but sad that it’s come to this – uprooting the kids yet again, and putting Ned through more intensive treatment.
These 3 weeks back home in Tasmania were supposed to be a pause in the madness, and whilst the long-awaited reunions with dear people were sweet, and the return to our home amongst bush and wildlife was so soul warming, the weeks have unfortunately been awash with tension-filled, tumultuous days and cataclysmic moments.
After ending our Melbourne time with an unexpected 6-day admission for a very sick Ned (who’d also sustained a fractured shoulder), followed by a night in ED for Gilbert, and another round of gastro courtesy of our 3yo’s stellar hygiene, we then had multiple problems changing flights, then boat trips, then changing them all again. It was an exhausting time, whilst we were also dealing with the 4 unsettled kids’ emotions, and packing up our flat of 10 months. Discovering that the critical key for Ned’s continuous infusion pump was missing upon our return directly to the Royal Hobart Hospital ended our long day of travel with yet more cortisol-fuelled hours, but coming home to a clean, well-stocked house, courtesy of dear friends, was just so lovely.
Seth and I often comment how it makes our hearts sing seeing our children spending hours exploring and playing in our bushy backyard, and relishing the space after our 2-bedroom flat on the 2nd floor for the last 10 months.
Our frenzied weeks here have been filled with box unpacking from our house move 3 weeks prior to our sudden interstate relocation last year, Melbourne bag unpacking, and the enormous task of planning for this international venture - passports, visa applications, work-related and household admin before leaving for several months, combined with the regular hospital visits. Disappointingly, Ned’s central line got infected, he became septic and crashed very rapidly during one routine clinic visit last week, and he needed a 6-day admission – starting the night before I had to fly to the US Consulate in Melbourne (with Gilbert) for a few hours in order to attend the necessary face-to-face interview for visas. Despite eventually clearing that infection, there were questions about the integrity of his central line altogether, culminating in another new infection in his central line at the start of this week. After several discussions with Melbourne and Seattle, the decision was made to remove this compromised central line in fairly urgent surgery Wednesday morning – 3 days before our flights.
We’ve so appreciated having this reprieve of a few weeks back in our true home with our dear community – despite the hurdles and stress. It’s been a salve for our bruised souls. And now, as the 2 older kids have enjoyed a couple of days at their old school, farewelled their friends and continue filling their lungs with fresh Tasmanian air, Seth and I are hastily packing suitcases for the imminent, arduous 26 hours of travel to Seattle for 3-4 months, where Ned will undergo fairly intensive treatment on a clinical trial at Seattle Children’s Hospital, starting on Tuesday 8th May. We leave from Hobart at 6am on Sunday morning, and once again, humbly ask that you spare a thought or prayer as we begin this journey and settle in the US. This is a much more advanced treatment with more risks, and though there is good long-term data thus far, it involves ongoing treatment, and there are significant, long-term ramifications for Ned’s health. If we’re honest, we are both so fearful for what the future holds, but we’ve learned again and again that no matter how deep we fall, God will carry us.
“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you…” Isaiah 41:10