We’re nearing the end of another week and thanking God that it’s been relatively smooth sailing with no new hiccups so far. The thrombus (clot) is unfortunately still in Ned’s heart, but they’ve decided that they won’t treat it with anticoagulants (blood-thinners) unless it grows… which, according to the frequent scans, it isn’t at the moment. It’s still worrying, but it appears to be stable for the time being.

Ned’s surgery last week went smoothly, once underway – and we want to thank everyone who supported us in any way during that time of high stress. The surgeon managed to retract the port catheter enough (out of the heart chamber), and found it to be still viable… meaning that he didn’t have to completely remove and replace the entire port (into Ned’s other side). Despite a few timing dramas, we re-started chemo quite intensively immediately post-op, and, although Ned was very miserable and uncomfortable for the rest of that day (Wednesday), he seemed to return to his normal chipper self the next afternoon, once discharged home and playing with Lucy!

This last week, for us too, has given us space to pause and reflect more comprehensively on the seriousness of Ned’s current state and its potential consequences. And fortunately for us, Ned has been most amenable to lots of cuddles, kisses, tickles and laughter – testimony to the resilient, cheerful personality God has given him.

There are aspects about this journey that, believe it or not, have been positive… such as the frequent one-on-one times with Ned, the deepened empathy for friends or patients battling cancer or other hardships, the extended family time… for, though Seth and I worked only part-time so the kids were always home with one of us, we were rarely home together.

But besides the obvious disadvantages of this journey, the more subtle negatives manifest themselves to me as the reduced social interactions we’re able to participate in or host, the exhaustion brought by prolonged emotional stress, Lucy’s occasional (unheard, but obvious) resentment towards Ned for the postponed opportunities or family adventures, and the parenting compromises we’ve had to make (and no, I’m not talking about compromising routine discipline).

For instance, Ned had a dummy that was weaned many months before his diagnosis, but we had to re-introduce it for comfort during harrowing procedures and to administer much hated medication (don’t tell our dentist!). And beforehand, we were fairly strict about a minimal sugar intake and daily outside time for both children – ideals which can’t be adhered to when hospital food and long admissions feature so greatly in our lives.

By now, if Ned were able to walk well and quickly, we would’ve tried, and hopefully succeeded at, toilet-training. And at this same age, Lucy had been participating in music groups, playgroups, a language class, swimming lessons, interspersed with lots of bush walks, playgrounds and beach outings. For Ned, however, we’re very limited with what we can expect of him, expose him to, and his social interactions with other kids his age are few and far between. So our home life has to provide enough stimulation for a growing, curious, adventurous 2yo boy… and, thanks to our treasured Duplo and train set (amongst other toys), we’re not doing too badly!

In some ways, despite my frustrations, this has done us a world of good… because, before, I was “that mother” who always wanted to be out of the house with the kids, doing something productive, useful or fun… which couldn’t contrast more vividly with our current lifestyle. And, even though we (particularly I) still have a great deal to learn, it’s made us slow down a little, take the pressure off, and cherish the simpler moments and interactions with both of our precious children. Initially unwanted, never before has the productivity-vs-idle-fun seesaw been so heavily weighted towards the latter.

Over the next few months, this will be amplified. Ned's become neutropaenic again (expectedly so, due to last week's chemo), and will remain so for the next few weeks. In approximately 3 weeks (conditional to having no further delays), Ned will have another bone marrow test to check if he’s responding adequately to the recent high-risk treatment protocol. As I’ve mentioned before, if this test shows a poor response (as the last one did), we will probably be sent to Melbourne for a likely bone marrow transplant. On the other hand, if this test shows a good result and optimal response, we will stay in Hobart, and embark on 2 months of week-in-week-out of hospital (ie. alternating one full week admission, one week at home) for high-dose methotrexate. Although the latter is the preferred option (given that we’ll still be at home), it will be challenging and brings a degree of uncertainty and anxiety because methotrexate is what caused Ned’s rare dystonic (seizure-like) reaction a few weeks ago. So he will have to be monitored very closely over those 2 months.

Seth and I are continually buoyed by the continued support we are receiving. We had expected that by now, at 3 months in, interest would wane and “sympathy exhaustion” would set in, with people realising that this battle is a long drawn-out journey and we’re really only at the beginning. Thank you to those who have defied our expectations and continue to pray, write to us, cook for us, offer financial assistance, and just generally support us (particularly the anonymous giver – thank you!). It’s certainly doesn’t go unnoticed!

Edward Isham