Well we've managed to successfully spend 5 days out of hospital WHILST NEUTROPAENIC (meaning no infection-fighting cells)!!! An occasion worth celebrating... well... given that we make it to the end of today (Sunday) without a temperature...
Frustratingly, it's been both kids' "normal, developmental" behaviour which has been causing us the most grief and challenges over the last couple of weeks. Funnily enough, cancer does not thwart the path of "terrible twos" and their associated headstrong stubbornness and violent tantrums! Likewise, our eldest seems to be constantly terribly tired and grumpy, and, despite her mere 5 years, acts like she's going on 15. Her worsening behaviour, noticeable deafness and obstructive congestion over the last few months has forced our hand in booking her for a strongly-recommended adenotonsillectomy, with possible grommets, next Monday (the 29th) - the first day of our Tasmanian school holidays. I think we're perhaps pinning overly wild hopes of miraculously transformed behaviour and drastically improved weekends at home once she's had the operation!
Ned's now completely bald, after I was convinced it would look better than the head of wispy, straggly strands he previously sported, and fortunately, his skull is nicely shaped! :) The hairlessness is a characteristic he seems proud enough of to boast about, especially to his similarly-bald paediatric oncologist - a joke they often share, whilst touching each others' heads. The port wound under his right arm has healed quite well, and, although the routine bi-weekly access is still fairly traumatic, he's adjusting to the routine of it, and happily familiar with all the staff involved in his care - which makes hospital visits much more bearable. For now, he knows no other life (or vocab) than "medicine", "port", "hospital", "nurses", "doctors", etc - strange for us, considering he was a previously completely healthy, robust child with no medical complaints or need to even visit his GP.
Since Ned's so immunocompromised and, thus, house-bound, Seth and I are becoming much more adept and capable of entertaining both children at home - a task that's been made inordinately more manageable with the beautiful, sunny weather, our trampoline, and the completion of Seth's "birthday deck", built by him and a builder friend primarily, and helped along by some good mates on a workday.
This is, in part, compensatory for our inability to have family outings, market visits, and social activities. Seth and I dearly miss being able to go to church together, have friends around for meals and play-dates, and take the kids on adventures. We long for a Melbourne trip to visit family and friends, a child-free night, or even just some child-free time together, a peaceful resolution to a stressful situation with a neighbour; and I, especially, yearn for a night of unbroken sleep with no fears or anxiety about the future, and no daily gut-sinking, sudden realisation that our child has cancer. Thankfully we both have coping and sanity-preserving strategies - like my regular runs or gym visits, Seth's occasional cinema evenings, and our evenings together once the children are asleep.
Negative as it sounds, this is my honest account at the moment. Despite having a strong faith that we are in God's hands, we both still have our human fears and failings - many of which are being exposed whilst navigating the battlefields of parenting 2 very strong-willed children - whom we both love beyond comprehension. Although it feels like a very lonely journey when tossing and turning at night, we know we are not alone in it. We are reassured of this in every loving hug, encouraging message, delivered meal or baked goods, and offer of help.