Life hasn’t got much easier since my last blog post. Unfortunately Ned has had continued complications and/or infections, so hasn’t been able to leave hospital at all. And given his seeming susceptibility to any passing infection, and propensity to have slow recoveries and poor cell counts (needing frequent transfusions and constant quarantine), we’ve been told that it’s likely he won’t be discharged from the ward at all till well after his scheduled bone marrow transplant in (probably) October. This was a rather grim revelation for us since it further prolongs our family’s state of fracture… with Seth and me alternating between either overnight-ing with the girls at “home” and staying in hospital with Ned. Often, we attempt to all eat dinner together in the hospital room, but the oft-ensuing chaos is not really conducive to doing this every evening, especially given how little tolerance an easily-fatigued and irritable Ned has for either sister. Ned feels awful, has constant pain, nausea, weakness, itchy eyes, skin breaking down, ulcers, is missing his energy levels, his outdoor fun, his kindergarten playmates, and dislikes his “legs that don’t work”. Although initially being quite sad about his rapid hair loss, he’s a bit happier now it’s gone and he’s not so constantly itchy.
It does also mean that Seth and I are constantly busy or occupied – either with usual household / parenting duties (especially the emotional adjustment that has proven quite challenging for some of our kids), or caring for Ned, with his significant physical incapability. Accordingly, though familiar faces are encouraging, and we’ve felt so loved in having close friends fly from Tasmania or drive in to help with the juggle, it’s a bit tricky for us to take more than 1-2 hours out of hospital or away from family at any one time.
We’re relieved that Lucy’s started in grade 3 at a small, local school, just across the road from RCH, where she’s already made a few friends, enjoying classroom interaction and activities, and getting along well with her teacher. We’re also feeling blessed to have found and settled in a local church, where we can rely on lovely social interactions weekly and seek additional support.
The other wonderful news since my last update, however, is that Ned has a bone marrow donor. The slightly bittersweet side of it for Seth and me is that his perfect match is his 2yo sister, Eleanor. Being in a state of emotional fragility already, this is challenging for us both because it means we have to involve another of our precious children in medical procedures due to leukaemia – the enormous monster we’re battling, which seems to be spreading its fingers further and deeper into our lives. We still find carrying in vulnerable-looking Ned to be put to sleep in theatre every single time takes an emotional toll, and now we’ll be handing over our even smaller child. But we’re equally thrilled that he has a “gold-standard” sibling-matched donor.
Eleanor will have bone marrow aspirated from her hip while anaesthetised, then will spend a couple of nights in hospital for analgesia and possible iron replacement. As soon as her bone marrow is removed, it will be sent for a few hours of processing and treatment, then will be brought up later that same day for reinfusion into Ned, followed by another 6-8 weeks in complete isolation. This process will probably all be beginning in October, when we have a newborn as well, so it’s a rather daunting few months ahead… Much easier to instead focus on each day at a time and be thankful for the occasional fun family moments in the hospital room, the rare nights of better sleep, and the hearty chuckles we can still sometimes elicit from Ned. We lose track of the weekdays when we’re in hospital all the time, so time is better marked by the schedule of procedures or chemo agents being administered, and instead of the usual workers’ end-of-the-week exuberance, our weekday moods fluctuate according to the anticipation of a less rigorous day or the dread of more procedures or imminent test results. Right now, though, we're enjoying a slightly more peaceful few days in hospital, before another gruelling month (with steroids) begins, while Ned's body recovers from the first 4 weeks of intense chemo...
Thank you to all of you, though, who continue to keep in touch, support us, lift us up in prayer, and read our updates - this is probably our simplest portal to update you frequently if you're interested.