This last week has brought juxtaposing emotions – apprehension and relief. Ned had surgery on Wednesday, and he was under a general anaesthetic for nearly 3 hours – a period which did not pass quickly for me. As I explained during my last blog entry, during that time, he had some bone marrow tests and had a port inserted just under his skin (between his right nipple and right arm) to enable chemo administration from now on.

The surgery itself went smoothly, but Ned’s post-GA grogginess took a while to wear off, and when it did, the pain and discomfort upset him and he struggled to move at all for a good 24 hours. Neither Seth nor I had given much thought to the fact that we still have to lift and carry 15kg-Ned for everything, and now he has a very painful surgical wound just under one arm… which makes mobilising him and transfers quite challenging!

He seemed much brighter the next day, and consequently, he was discharged from hospital – to our delight! Lucy was excited that we were all able to travel home together, and Ned was smiling for the first time...

Which brings me to the other emotion: relief. Ned’s month of steroids ended on Monday, and what a reprieve it’s been for us all! One doesn’t quite understand the nasty effects of steroids until your own sweet, kind-hearted, cuddly child turns into a little, depressed monster. Ned’s old personality was entirely consumed by constant angst, irritability, lack of focus, emotional lability, and voracious appetite for several weeks… which was exhausting and emotionally draining. He ballooned by 2kg in 3 weeks from the steroid effects, the lack of any exercise (from steroid-induced muscle weakness and bone pain), and the overeating – weight that will invariably come off over the next few weeks.

This last 4-week steroid course finished on Monday, and by Thursday morning, Ned’s giggly, cheeky, smiley self was seeping through the post-anaesthetic haze and surgical discomfort. Friday, spent at home, was one of my most pleasant parenting days in recent history. Ned’s brave disregard for his ongoing pain, cheerful personality and enjoyable companionship brightened our household considerably. He laughed hysterically at my “jokes”, happily played with Lucy, chatted amicably over a (reasonably-sized) lunch, and actually napped properly!

The pleasant evening we had as a family was documented with some simple iPhone photos and this video (below), because we want to commit these moments to memory – since this atmosphere is not permanent. We cannot lapse into thinking “he’s done; the tough stuff is over” – which I’ve nearly done a few times. No… this is a mere reprieve. This illness he has is not just a 6-week illness from which he can be so simply cured. In fact, for each of the next 3 weeks, Ned will have a general anaesthetic so chemotherapy can be injected into his spine. Steroid weeks, hospital admissions, awful chemotherapy, and nasty infections will play a large, intrusive role in our lives for several years, and there will be repercussions for many years to come.

But it’s day by day for now… just day by day. And these days are just beautiful.

Emily

Edward Isham