Ned's confidence amidst uncertainty

Another week begins... another week of hospital appointments, chemotherapy, work, school, my own obstetric appointments, etc. Since each week brings such uncertainty, it's always a fairly chaotic, disorganised, unplanned affair!

Fortunately for us, both children are relatively adaptable with changes, as long as they are consistent and known changes. Ned has developed quite the "charmer" personality, and totters around oncology clinic like he owns the place, ever bearing his cheeky grin, and confidently engaging with the staff, other children and their parents. I think in some ways it's a blessing, really, that he was diagnosed so young, because this lifestyle has quickly become normal and "routine" for him. Had it been 5yo Lucy, she'd probably be more aware of the unusualness and differences of a "leukaemia lifestyle" compared to that of a healthy child, and potentially feel quite cheated when having to forego certain activities and opportunities.

Ned now thrives in his newly-found confidence amongst the paed oncology community at the hospital. Having the same few staff in clinic at every visit means he feels comfortable and at ease, having developed unique jokes, habits and routines with each of them... like his coy wave to Helen... 

As a result, generally, Ned is now perfectly happy to have to visit hospital so frequently and sit contentedly still for bloods and various other tests... most of the time...

Currently, we're continuing on with routine chemo and blood tests, as well as regular heart scans to check on the thrombus in his right atrium - which still seems unchanged and fairly stable. It does continue to worry me - moreso during the nights, and during the times when his heart is working harder, like his screaming tantrums. Since he's such a little chap, the high-risk chemotherapy does seem to take its toll on his blood cells, and they take longer than usual to recover - which meant he had to have more platelets and blood transfused last week. And the all-important bone marrow test (under general anaesthetic) that will determine the direction of our lives over the next 6-12 months has been pushed out till next Tuesday (the 18th) - with still potential to be postponed further if his recovery from chemo this week continues as slowly.

Since this journey began, Seth and I have been increasingly aware of our new inability to plan ahead in any way. I now refrain myself from telling either child about upcoming events or plans, even though half their excitement is born of anticipation, to prevent dashed hopes and disappointment. This, of course, will present a whole new world of "organised chaos" with the upcoming Christmas season. I suppose it's a blessing in disguise that the decision about a Summer trip to Melbourne to see my siblings and extended family has been taken entirely out of our hands... since we don't even know if we'll still be in Tasmania in 2-3 weeks. We may even be celebrating our own family Christmas on a day other than the 25th. I do remember, though, from my time working on the paediatric ward here, that Christmas Day is still a celebratory, festive occasion when in hospital, and the staff do their utmost to brighten the kids' day.