Groundhog Day

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Ah life. A relentless, wearying, cortisol-fuelled rollercoaster ride recently... and most of 2017 really, starting with my exams at the beginning of the year. Ned's discharge from Transplant Unit just before New Year's Eve perhaps instilled some hope that 2018 might possibly be a better year for our family... 

Ned had his transplant on the 27th November, and it went smoothly, by the grace of God – although Eleanor (present at the door during infusion, thanks to donor privilege) fainted while watching! Poor 2yo poppet had had croup 2.5 weeks earlier, then gastro 4 days prior (being admitted to hospital till the procedure), then fasted till theatre just after midday – with not one complaint. She was fairly fatigued and in pain for the following couple of weeks, but has now made a full recovery, being well and truly back to her cheeky, mischievous, vivacious self. Although now, she refers to every man in theatre scrubs as “my theatre doctor”, and calls the RCH “MY host-el where Ned goes” (as opposed to being previously named “Ned’s host-el”).

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The weeks following transplant, including Christmas, stretched out in a bleak Groundhog pattern, in a sealed transplant ward bubble, with growing anticipation of engraftment with each passing day. The days were long, and the weeks were short. Regular bloods told the story of what his bone marrow was doing, while his small body was wracked with pain (from mucositis), nausea, fatigue, incontinence and various other awful symptoms. Consequently, he soon ceased to tolerate any oral foods, and vomited up his nasogastric tube, thus condemning him to TPN (IV nutrition, so to speak). Seth and I split the weeks – Seth home with the girls half the week, while I was in with the boys, and vice versa. It was an emotionally harrowing time as we dealt with not only Ned’s immense suffering in that small room, his sadness at losing his hair yet again and missing his sisters, but we also had to stay up to speed with the medical issues, maintain necessary prompt care & constant distractions for Ned, round-the-clock nighttime care, keep the irritable baby fed and comforted, and coordinate & care for the girls on the outside of the transplant unit, all whilst being separated ourselves. It was a life that I wouldn’t wish on anyone, but it was a life sustained by God, in the capable, knowledgeable hands of a very experienced medical team, in a rigidly-controlled unit.

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Official engraftment occurred by Day +26 – a milestone based on stable bloods, showing that his new marrow from Eleanor was finally producing its own cells. It was an exciting day, but soon followed by the requisite nasogastric tube reinsertion (a very distressing day owing to initial misplacement), and the commencement of the inevitable mealtime cajoling and eating conflicts.

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Quite apart from our own family’s fractured state and emotional havoc, many families around us were suffering immensely as well. Though it’s an oncology ward, the battle mentality can make you forget the horrid opponent; the inevitable outcome that confronts some of the kids and families who you and your sick children befriend. Just as a non-cancer parent thinks “thank God that’s not us”, a non-palliative cancer parent thinks the same about reaching the end of the line – the point where there are no more cards up the treating team’s sleeves. One of Ned’s closest friends from oncology, with whom he did ward kinder classes, lost her battle shortly before Christmas, and we’ve been so grieved for her parents who have lost their precious little soul. Such a cruel, despicable, insidious disease, cancer...

Ned was discharged after 6 weeks in hospital, on many strict medication doses, full continuous nasogastric feeds, into home isolation that has to be temperature-regulated, where we’ve had to bargain with Ned (suffering from significant nausea and lacking any appetite) to eat, but only foods on a ‘clean’ transplant diet. Going back to a 2-bedroom flat with 4 children and these requirements for one of them (including the continuously-alarming nasogastric pump, which invades even the deepest of sleep), has introduced a whole new level of heightened tension and stress in our household, especially because it’s been lovely weather and Summer holidays – a time when the kids want to go out and have adventures together (but Ned has to stay away from people) and play in sunshine (Ned can’t get hot, and can’t be in direct sunlight). Seth and I have had to constantly act as super-tolerant, peace-bringing, creative, nursing, multi-tasking, consoling mediators, on the back of very little sleep. We are so thankful for God’s sustenance - the strength we can muster even when it all feels so vastly beyond our capabilities. Our patience is often tested, so Seth and I have made efforts to improve our mental health and 'sanity' by having unrelated goals we can each focus on - Seth enjoys art projects, and I enjoy all-consuming exercise. Seth's working on a glass sculpture for a small exhibition later in the year back in Tasmania, and I just (rather spontaneously) ran in a half marathon event on the weekend, which gave me that thrilling 'runner's high' for the better part of the day. 

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Though recently, the investigations for a worsening limp, fatigue and low-grade fevers came back normal, a week prior, we had a big blow - Ned’s 30-day bone marrow results came back a tiny bit positive, when they should have been negative. I must say, I’m becoming sadly well acquainted with the heartsink, sucker-punch feeling from seeing my phone ring with the name of a doctor on the screen, and the words “Hi Emily, I’m sorry to say…” And my ensuing feelings of shock, indignation and fury at God. This is not definitively a relapse, and there are some treatments that have been tweaked to try and attain a negative result, God-willing, at the 60-day bone marrow test (on 1st Feb), but every time I even so much as think of that day in the weeks ahead, anxiety and dread overwhelms me. Because there really aren’t many more cards up our sleeves… 

 A nativity scene planned and executed by the kids before Transplant

A nativity scene planned and executed by the kids before Transplant

 Reunited after discharge! 

Reunited after discharge!