”bright pledge and rock”
3.54kg; 4.09pm, 23rd August 2017
What a joy it’s been welcoming a new little one to this world of ours... but also how heartbreakingly difficult for me particularly. Into a world of tension, chaos, anxious siblings, white walls, sadness, resentment, anger, and exhaustion came baby Gilbert on that Wednesday - into the skilled hands of 2 midwives (one of whom is a treasured friend who flew up from Hobart), while my parents and my other dear friend, Jess, helped with the day's coordination. There was excitement and relief at his safe arrival, but as the overjoyed sisters and brother cuddled him enthusiastically, the happy tears had a bitter after-taste. I’ve never before experienced such contrasting extreme emotions concurrently: 2 children of ours - one tiny, pink, screaming bundle in the arms of one fatigued, luminously-pale, hairless, sunken-eyed brother. To this day, try as I might, my heart is perplexed by this juxtaposition of thrilling new life against a constant background of sadness... and my smile often masks uncertainties about how to act or what to say. I think the fact that we feel like we’re simply treading water and “surviving” on an adrenaline rush has prevented us from deeper considerations.
Since Gilbert’s birth however, despite being quite the discontented, unsettled child, we have had moments of pleasantness and delight - sibling cuddles and pride from showing "their baby" off, the peace afforded by a warm bath, the bright newborn eyes, wise beyond his years, cynically drinking in all the shadows and bright colours around us... Although this is my fourth precious baby, I'm still in awe of this miracle of life and the evidence of our Creator's hand in its formation.
To be perfectly honest, it’s been a really tough few months. For the first 7 weeks of Gilbert’s life, Ned (and thus Seth) have been in hospital, which no-one liked. Ned was SO sad he couldn’t be at home to welcome his brother and hold him every morning, Seth was sad he didn’t get those evening newborn cuddles, and I was sad (and frustrated) that I didn’t have Seth to help me with any newborn nights or sick girls, that my family was so fractured at what should’ve been a joyous time. I have also felt such guilt because Gilbert has spent a great deal of time screaming by virtue of me parenting solo and being physically incapable of tending to his (frequent) distress instantly (I’ve since found out that his diagnosed laryngomalacia and reflux are to blame for his feeding issues, difficulty sleeping and slower weight gain than my previous babies).
On this background of fatigue and emotional exhaustion are moments where the reality of childhood cancer has struck with such force. When you’re on an oncology ward constantly, you bond with other families all fighting the same battle... to win. The unspoken elephant in the room is what the grim reality of a lost battle means, and heartbreaking news from several friends has blindsided us and forced us to process our raw grief at so many other children’s suffering, particularly these friends. It’s a different world this, an “alternate universe”... one where you can’t ever feel secure about any of your kids’ health; one where bad news is often expected; one where your kids learn to pray for people “not to die”; one where making serious decisions for your child’s future, whilst juggling multiple children, emotional fatigue and sleep deprivation is considered the daily norm; one where long complex medication names are the standard language used; one where the anxiety of any situation’s risks and children’s safety overrides anything else; and one where, rather than discussing how to optimise your child’s life, health and long-term happiness, discussions simply revolve around your child’s expected morbidities and long-term survival rate; and one where your constant mental state is tense and on "high alert".
Despite the trials though, these last few months have also finally brought us some unexpected better times. Ned was started on a clinical trial where he happened to be randomised to the trial immunotherapy drug (as opposed to the standard chemo regime that was the other trial arm). It consisted of a 28-day continuous infusion from an infusion pump in a back pack he carried constantly. We were so relieved that Ned was randomised to the immunotherapy arm (an answer to prayer) because, although long-term studies are lacking (hence the trial), it’s meant that, once he was stabilised, he could be discharged from hospital for a few weeks, carrying the infusion pump in his backpack. The alternative was weeks of more heavy chemo hooked to the IV pole in hospital till transplant. Despite most days spent in hospital still (tests, procedures, checkups, reviews, etc), it has been so lovely having him ‘home’ again. He’s really enjoyed the freedom of no IV pole, being able to play Lego with the girls again, walking with us to & from Lucy’s school, eating meals together, etc. Furthermore, given we haven't yet reached transplant time, but the clinical trial has now ended, he was approved for further compassionate access to the drug because he has responded so well to the 28-day infusion (so he can stay out of hospital rather than going back on nasty chemo before transplant). For this we are so thankful.
The transplant process has been set to start on the 19th November. This is the date Ned is likely to get the bed; then will start 7-10 days of 'conditioning' to prepare his body for receiving Eleanor's bone marrow - which is going to take quite a toll on his little body. The big Transplant itself is probably going to take place on the 27th November: Eleanor will go into theatre in the morning to have bone marrow aspirated, and then she'll be admitted to a ward for only a couple of nights of analgesia and other post-op management. The bone marrow will be processed in the lab for a few hours, then anti-climactically, the small bag (which looks like a blood transfusion) will be infused into Ned. From there we start the harrowing recovery day count; Transplant Day being Day 0. The first 3-4 weeks will have the highest risks of complications.
Thank you for getting this far - we are humbled by the interest of those following along and praying for us or simply pausing to think of us and convey that acknowledgement in some way. This was a tough blog post to write, which is why I kept putting it off, but right now, in this moment, though we are still upset about a lot of things, we are grateful Ned's our son, and we feel privileged to hold his hand and walk with him in his vulnerabilities, tears and fear, trusting God is guiding us - especially through the bleaker months ahead.
Credit to our dear friend, Lisa Kuilenburg, for most of the photos (the best ones!) in this post.