It’s been the baneful niggle of our 3-year relationship with Ned’s leukaemia… the dreaded Relapse. And when you have a first year including the shocking initial diagnosis, upgrade to high-risk, multiple complications, many infections / blood transfusions, etc etc, you half expect the ground to cave beneath your feet at THAT point. Not 3 years later… when you’ve adjusted to a less rigorous routine of “maintenance chemotherapy” and less frequent checkups, fewer blood tests and treatments. Not when your sick child has had half a year of kindergarten with no major setbacks, having started to learn how to socialise with peers and make friends, having started to develop better leg strength and gross motor coordination. Certainly not after you have a challenging year of a miscarriage, other children’s health problems, sleepless nights, fellowship exam study and exams, morning sickness of an much-anticipated new pregnancy, selling a house, buying a new house and moving. No… I have to say, for me, for the first time, the fear of Relapse had definitely fallen to the backburner as we’d been trying to negotiate all the other life stressors and demands.
Unfortunately, this is the way cancer works – insidiously and slyly. We had only approximately 7 months to go, had discussed a possible end-of-chemo party with him, and had re-booked Ned’s previously-postponed Make-A-Wish trip to Hamilton Island (a boy who loves beaches!) for July. And we’d actually told the kids so they could count down – a definite sign that this setback was unheralded.
But that niggle that I’ve always had was realised on the morning of Tuesday 20th June, at a usual clinic check-up with Ned and Eleanor… our 2nd D-day, nearly 3 years later. A result that showed that Ned’s chemo hadn’t been working and the leukaemia had come back, infiltrating his bone marrow (by 89% already!), and causing his body to stop producing his normal cells.
As our doctor broke the news to me, whilst Seth was at work 20 mins away and Ned & Eleanor were quietly playing, the worlds of our little Isham family members caved in around me. You know that moment when, as a new Mum, you’ve just been through umpteen hours of tremendously difficult, painful, exhausting labour, and you’re just barely starting to recover when you realise that you have to now learn to breastfeed AND do so every couple of hours 24/7?! Well this was it. Seth and I were already wrecked from the year that was and about to fall in a heap. Yet now we had such devastating news, we had to suddenly make and act on numerous practical decisions that would affect the whole family. We hastily planned for me to take Ned to Melbourne the next morning to begin 8-9 months of treatment, and Seth and the girls would join me a bit later, after he’d finished school reports and given Lucy a chance to say goodbyes. Then we could start thinking about how to schedule our Melbourne lives, incorporate a new baby’s arrival, find a temporary school for Lucy, hope Eleanor would fit in around the chaos, and work out the finances without the usual income streams (fortunately and very kindly now covered by the Go Fund Me campaign set up by our lovely Carmichael friends).
I had the first 1.5 weeks here at Royal Children’s Hospital, Melbourne, with Ned, and then the rest of the family joined us. It was one of the hardest periods of my life, and I felt so alone – Ned had some horrendous days and nights… so many days of fasting and going to theatre, waking up disorientated and scared, being woken 1-2 hourly every night for urine +/- obs checks, suffering some awful side effects of chemo and infections, being burned from leaking toxic chemo under his skin, all whilst not understanding the sudden upheaval, missing his sisters and Dad, living in a very unfamiliar hospital with unknown staff, feeling miserable, and taking his growing anxiety out on a sleep-deprived, pregnant Mama.
I can’t begin to describe how sad I am about seeing Ned, and the other family members, having to walk down this agonising road again. Every hour of every day, my heart bleeds watching my 5yo sweet boy endure so much discomfort, pain, fatigue, nausea, irritability, misery, sadness, and confusion; his pale face and sunken eyes, his inability to walk more than a few steps without wanting to lie down, his lack of enjoyment in eating anything, his impossible desire to play with his sisters because of fatigue, and his regression in other learned skills and focus.
My heart aches observing Lucy try so hard to adjust to a sudden extraction from her close friends, her regular school routine at a much-loved school, a home amongst bush (which she’d just started enjoying after moving 3 weeks prior), a seeming disinterest in her wellbeing from both her parents… Fortunately, 2yo Eleanor, although more emotional than usual, will always find a way to make friends or burn off energy – whether it’s careening down a hospital corridor in a toy car, or doing gymnastics over the couches at our Melbourne accommodation. It is also rather suffocating and exhausting learning all the new schedules, protocols, medication doses, etc… without interfering and advocating with my professional hat on. Seth and I were already so weary, after living this life, without respite, for 3 years, and the prospect of what lies ahead is daunting, since it includes much more intensive chemo and 2-3 months of Ned in isolation for bone marrow transplant, around the same time that we’ll have a newborn.
It is our boy though, our darling son, who is suffering the most, with infection after infection (now we’ve been here just over 3 weeks, and he’s only had 2 nights out of hospital – both of which he was very unwell and rapidly deteriorating until we went to ED). Whilst we don’t really feel “lucky” at this stage when we see our dear lad suffering, we are immensely thankful for a brilliant children’s hospital with access to world-class treatments and specialists, especially knowing that in many other parts of the world, like Congo where my parents live, many children with leukaemia wouldn’t survive from the outset. We also want to acknowledge the abundant support by several communities that have stood beside us through this upheaval, with prayer and / or constant encouragement – our wonderful church community back in Tasmania, our dear friends, my extended family in Melbourne, and an amazing medical parents’ Facebook group that have pulled together to sustain and provide where needed. Though I’m aware of many online blogs / journals / articles describing cancer “journeys”, many people have requested regular updates about Ned, and this is the best way of dispersing this information.
And now to re-learn exactly what I wrote my last blog post about...