Sleepless in Springtime Seattle
… An apt description of our first 2 weeks here…
Seattle is a spectacular city – this time of year only serves to highlight its luscious greenery, with an abundance of blossom dappling the sunlight onto footpaths, and painting the perpetually-azure sky like a canvas. We’ve been fortunate to now be settled into a short-term rental house, furnished by a very generous community, within walking distance of Seattle Children’s Hospital. However the turmoil of moving away from home yet again has been deeply unsettling for all of us; our nights being endlessly broken by each of our children and our own wrestle with undulant fears and uncertainties. Foreign differences we once would have easily assimilated, such as cultural variations, unfamiliar healthcare system, hospital operations and measuring units, amplify any feelings of pre-existing vulnerability and despondence – especially when already emotionally and physically deplete, with 4 jet-lagged kids in tow.
We left our Tasmanian home at 3am on the 6th May, and after traveling 26 hours, we arrived in Seattle at 11.30am on the 6th May! On the 14-hour leg to L.A., the kids’ naps didn’t overlap, one’s stomach was affected by turbulence, one shamelessly threw outrageous tantrums and played chasing games down the sleeping aisles; then a pilot fainted and fell down stairs sustaining a nasty head injury, and seemingly, there were no other doctors on board. At that flight’s end, as I handed over to the ground medical team, some disembarking passengers offered sympathetic looks to our embarrassed selves, but our mortification continued, as our darling 3yo screamed her way through the entire airport. Hey hey, Seattle, Eleanor Isham has arrived!
Our first few days were spent attending initial appointments at Seattle Children’s Hospital (finally putting faces to the names from many email conversations), celebrating Mothers’ Day over a delicious picnic in gardens with some new friends, and exploring the local area for essentials, as we searched for longer-term accommodation. Amazingly, after we signed the lease on a vacant house, Juli, the friend of one of our Tasmanian church members broadcast our need for household items via social media, and by the end of the week, our short-term rental was generously furnished – giving a local TV channel a triumphant news story.
The sheer delight on the kids’ faces upon discovering their beautifully-made beds and gifted toys gave us some blessed moments of joy, after so many days of running household tensions and anxious over-reactions, and Juli and her husband, Chris, have continued helping us settle in.
Finding a home here, with a small garden, more than 2 bedrooms, and play areas for the kids, meeting some neighbours, Lucy making a friend, and the lease of family bikes to get ourselves around was all timed perfectly. Following our move into the house came a week of bad news. The evaluation tests done in the first few days revealed Ned’s bone marrow leukaemia had increased from <0.01% to 43% within only 1.5 months, and spread to his CNS (spinal fluid) for the first time, which immediately alters long-term prognosis. This shocked our Seattle, Melbourne and Hobart teams, and plans were hastily amended to include some intense chemotherapy as soon as possible after his T cells had been extracted. This ‘apheresis’ process was carried out last week, after surgery for placement of a new Hickman central line, and he’s now re-started intense chemotherapy to try and hold his disease till the T cells are ready for re-infusion.
The second devastating blow, delivered a few days later, was that due to Ned’s unique T cell biology and disease load, he will require a 2nd bone marrow transplant. The CAR T treatment that he’s having here (tailored to his specific T cell markers, and so new that Ned will be the 7th in the world to be treated) is still imperative to remove his current chemotherapy-resistant cancer’s aggressive build-up; however CAR T independently will not be enough to achieve long-term remission, and will instead now act to maximise his chances of a 2nd transplant being his “cure” (as per the limited long-term data we currently have for this treatment). Ned will go into transplant (this time from an unrelated donor) upon our return to Australia – meaning we won’t get to go home to Tasmania in August. And whilst we knew this might be a possibility after our Seattle time (based on his in-depth cancer evaluations and response to CAR T), having to begin everything all over again in Melbourne is a monumental disappointment that we are yet to convey to the kids for fear of our own crumbling emotions.
Momentous day: apheresis (T cell extraction)
Celebrating Ned’s 6th birthday on the weekend was bittersweet. By cooking pancakes for breakfast, taking a family train trip into the city, sharing fish & chips at the waterfront, riding the ferry to Bainbridge Island for ice cream, watching fishmongers throw fish at the markets, and having a candle-lit Spiderman birthday cake, we ticked many of the boxes on Ned’s wish-list, to his delight.
Although the bitter undertones were unavoidable for us, and though there’s plaguing guilt about each of our children being short-changed, we’re trying to remind ourselves to cherish the preciousness of each child, to simply be, thanking God for the 6 years we have had of this delightful, chatty, affectionate little lad, who just loves telling long-winded stories at the table instead of eating his dinner.
