So we've come to the end of another week - Week 4 of treatment. Come Monday, Week 5 begins - a milestone signalling the completion of the Induction phase of treatment (to hopefully bring the leukaemia into remission), but also a week of apprehension and jitters because Edward will be having surgery on Wednesday morning. This surgery is to do another bone marrow test, check his response to the chemo thus far (and make sure he IS in remission), and insert a "port" - a steel valve under his skin (just lateral to his right nipple), to enable more simple blood access and chemo insertion from now on (rather than needing constant needles and IV line insertions at every hospital visit). It is routine to wait till Week 5 for a port because, until now, until they're in remission, leukaemia patients often have unstable platelet levels (causing coagulation problems which wouldn't be ideal for surgery) and very low neutrophils, making them more susceptible to surgically-acquired infections. As it is, with Ned's neutrophils now actually existent, his risk of infection from this port insertion is 10%.
This last week however, other than routine tests and chemo in the paediatric oncology clinic, has been spent at home, being treated to glorious weather and sunshine. Unfortunately Ned, still being on steroids (one of the chemo drugs), has continued to be agitated, irritable, unsettled, moody, lethargic, weak (still not walking), sleepless, and very, very hungry - which has certainly tested all of our patience, stamina and muscle strength! We're all keenly anticipating the few upcoming weeks' break from steroids!
The other low this week, which was most unwelcome, was Ned's rapid hair loss. It caught us quite by surprise because we'd been warned it would happen as a side effect of a chemo drug during his 3rd month of treatment. Watching your 2yo son wake up with a progressive patchwork baldness every morning is quite disconcerting and upsetting. As a friend pointed out, though, it does mean the chemo is working, and that is somewhat reassuring... and it means the vacuum cleaner has a constant presence in our living room- a rare occurrence!
Some things that have changed in our lives since this leukaemia journey has begun:
- Our medicine cabinet is now overflowing with medicines that Ned despises and screams at the mention of, and our weeks are filled with hospital appointments, and often, unplanned hospital admissions.
- The previously non-eating Ned is now quickly emptying our pantry and fridge (although our freezer has never been so full of delicious meals, so generously cooked by friends and family).
- We can no longer use our cloth nappies with Ned because chemo produces toxic waste. Rather, we now have to glove up and throw his disposable nappies into a purple 'toxic' bucket that, once filled, we take to hospital for incineration.
- Our lives are much less social, and any family outings have to be mostly on our own or to largely-secluded locations.
- There's now, sadly, no longer a need for us to save money for a family trip to Africa next year, mainly for a visit to my parents in Congo.
- We are now focusing on continuing our lives and work here in Tasmania for the next 4 or so years, rather than training as missionaries next year, learning a language, and then heading overseas to live and work long-term - which in itself brings some grief, since the desire to work in a resource-poor setting is why I studied medicine in the first place, and is also why I've worked so hard over the last 6 years to finish my DRANZCOG (Diploma of O&G), my Masters of International Public Health, and currently my FRACGP - the final GP qualifications, whilst starting a family. Seth, too, had been keenly anticipating putting his newly-acquired International Baccalaureate teaching skills to good use in another country.
- Seth and I now crave the 7pm kids' bedtime like never before!
- I'm currently having a few weeks' break from work, and am quite missing adult interaction and the brain stimulation that provided (although I'll be the first to admit my brain is currently not nearly as functional as it was before!).
- Lucy can no longer have friends around for regular play dates, and seems to be showing a few signs of frustration with our changed lifestyle... although she's thrilled with the endless supply of presents and baked goodies in stock!
- Ned is no longer your typical little boy - he doesn't want to be outside, he doesn't like playing with Lucy much, he's not mostly cheerful, and he doesn't run away the instant he's released... On the contrary, Ned only wants to be constantly carried and cuddled by his Mum - mostly possible currently, but perhaps not so much in about 4 months' time, when there's a heavily-laden belly for me to carry as well!
- Lastly, I've found people no longer want to tell me about their challenges, tough times or recent family illnesses, which can make conversations a bit leukaemia-focused and one-sided... Let me assure you that we WANT to hear how your lives are going, tough times and all! We know what it's like - we've done 5 years of "ordinary" routines, family-work juggles, insomnia, snot, vomit and diarrhoea. It's still a challenge being any parent sometimes, and us having a child with leukaemia doesn't detract from your struggles.