Day Zero [Take 2]
Today is Bone Marrow Transplant Day #2. A day we never dreamed would be necessary. But now, a day that we’re so thankful has transpired. And thankful, too, that we don’t have the same lead-in as his 1st BMT (from Eleanor) on 27th November last year, when 5 of our 6 family members were in hospital!
This humble gratitude, however, does not translate into unbridled joy. For with another chance at life for Ned comes a difficult road ahead for him primarily, as well as each other member of our family.
To be honest, though Ned’s been mostly well this last week, the despondency that Seth and I are feeling about what’s ahead is weighing us down. He’s just that little bit older and more aware now, and the girls (and we) are just that little bit more homesick for Tasmania. The initial period here from June last year was a “break in routine”, A bone marrow transplant. Now, a year has well and truly passed, and we’re yet to return to our home and life. Days can feel like monotonous plods through the hard work of caring for a sick dependent 24/7 in isolation, keeping up with a crawling baby, navigating a 9-year-old’s wildly fluctuating emotions and an energetic 3-year-old’s tempestuous personality; and it takes a herculean effort to show grace and not let resentment simmer.
Having said that, it is because of our loving Father and you, our ‘village’, that we are still standing, that we are still plodding forwards and not backwards; that Ned is still drawing wee bottle animals, building Lego, and waving out the window to his sisters on the grass. Thank God that Ned has even miraculously made it to this point.
One week ago today, Ned was admitted to the Bone Marrow Transplant Unit at RCH to begin ‘conditioning’ – wiping his bone marrow and preparing him to receive the transplant. This has involved hyper-hydration (hence the numerous wee bottles) and heavy chemotherapy. Today, he will be pre-medicated with steroids and have irradiation (at Peter Mac) in the morning to dull his immune system so he’s less likely to reject the graft. Following that, the donor cells will be infused over a relatively anti-climactic hour in the afternoon. Day Zero.
Then we begin the long recovery, getting worse before getting better… losing his hair (for the 6th time), waiting for engraftment, then healing from side effects and any organ damage, then re-feeding, eventually discharge from the unit, interspersed with critical, frequent bone marrow test results, then Day +100… then home. Or so we hope and pray.
Thank YOU for all your support thus far. May God continue to hold us and give us the energy and strength to face each day.
"The Lord himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged..." Deut 31:8