“Lucy, Ned’s leukaemia has come back again. And we won’t be able to get rid of it this time.”
“Why, Mum?! It’s not fair! Why has God let this happen??”
“My darling girl. I’m angry too. And so so sad. But given Ned was going to get leukaemia anyway, and nothing to our knowledge would have prevented this, given he was born into his short life, aren’t we fortunate that God chose our family to have Ned?”
We’re living a surreal daily existence; an alternate reality. A reality whereby the parameters of your old life have shifted dramatically. Where your prompting for your child’s farewells needs to change from saying “see you later” to “goodbye”. Where your utmost focus for your child is pain minimisation and comfort, no matter the cost, rather than considering the long-term consequences of certain medications. Where your daily self-expectations amount to simply responding to your children’s frustrations and meltdowns calmly, and administering each of the numerous medications precisely via the correct route. Where the very sick child’s irritability and lack of tolerance is granted compassion rather than discipline. Where each day’s usual firm routine and non-negotiable responsibilities are bent and moulded around each child’s capacity. Where the little things, like brushing teeth, doing some physical activity, eating a variety of food, or even eating at all, no longer matter. Where getting each child to sleep the night in their own bed is no longer an aim.
Since my last update, we’ve travelled a torturous rollercoaster, riding a brutally steep and swift descent from our preceding victorious ascent. Initially, in the five days after we received the news of his relapse in Melbourne, Ned’s disease proliferated at a devastating rate, and we had to cancel any ideas of his much-anticipated Hamilton Island Make-a-Wish trip, as well as letting my interstate family and overseas parents know to come as soon as possible. Instead, over the course of 2 days, some dear friends and the MAW team banded together to send us spontaneously up the east coast of Tas for 4 days. And although the reason for this holiday never slipped from Seth’s and my consciousness, that precious time away enabled us to switch off somewhat from the outside world and bask in obligation-free time as a family, although Ned became quite unwell on our last day, propelling me quickly back into my main palliative carer role.
Since our return, our immediate panic subsided with evidence that the palliative chemo was having an effect in reducing his disease burden and holding it steady… thus gratefully learning we may likely get a few more months, rather than just a few days to weeks as previously thought. These last few weeks have allowed us to reach some milestones that we’d previously thought unattainable – one being able to fight ‘villains’, save captives, ride fire engines and a helicopter in an epic local community extravaganza organised for Ned by some dear church friends and local kindhearted firefighters. Ned also proudly accompanied Lucy in the bridal party for a good friend’s wedding, and then celebrate her 10th birthday with her – albeit from bed.
However, we need to tell you, our village, that this time, the end is nigh.
Last Friday, Ned had a GA in theatre for planned surgery, new PICC line insertion (for central IV access), spinal chemo, a bone marrow test and lumbar puncture. He was discharged that evening, but his weeks-long pneumonia seemed to start worsening on Saturday, with further deterioration on Sunday. I had been attempting to keep him at home as much as possible over the prior 3 weeks, however on Sunday, it became quickly apparent that the infection would overwhelm his body if I didn’t take him into hospital urgently for treatment of vomiting, dehydration, confusion and severe pneumonia. He did slightly improve with increased fluids and antibiotics, but a consultation later in the evening with the paediatrician revealed that the regular palliative chemotherapy is no longer holding his leukaemia at bay, and the progression of this relentless, aggressive disease has been rapid. Our distress and grief from that initial suckerpunch was further amplified by our ensuing discussion to alter his emergency code parameters and Goals of Care plan to just ‘comfort care’.
Being discharged home from hospital loses all its triumph and relief when one is bringing their child home to die. The anguish is so very painful, the sadness is so very profound.
And so, it is home where we are and where we’ll now stay, in this new, most unwelcome phase. A phase whereby we bend to his every need and whim. Where we don’t need to cajole and implore him to “just eat a mouthful”. Where we don’t need to stress about when to take him into hospital in case of deterioration. A phase where every moment is spent either pleading for God to have mercy and take it all away, or begging Him to carry me where my stamina falters. It has been a heartwrenching and profoundly sorrow-filled few days and nights for us, reeling from the sudden realisation of our newly-contracted timeline with our darling son. And given his predominantly bed-bound state, his weakness, lethargy and fragility, we can no longer be ambitious in giving him special “lasts”. Through God’s strength alone can we trudge, with His soul-filling peace replacing our prevailing fear and panic about what’s ahead.
Each night, as Ned now sleeps next to Seth’s and my bed, it is a fresh deep and raw agony to realise we won’t hear that gentle, rhythmic breathing for much longer.
I’ll close this chapter with Ned’s prayer tonight:
Thank you for loving me.
Please help everyone have a good sleep.
I love you.
See you when I get to heaven.