This last week has been a challenging week... although, in all honesty, as pessimistic as it sounds, we have come to expect a fresh challenge every week recently.
Last weekend, we nearly made it to the end of Sunday without any major medical dramas - even though we've been cautiously awaiting another infection since Ned's still neutropaenic, and it feels like we've really been enjoying borrowed time out of hospital! Disappointingly, on Sunday evening, we noticed Ned started restlessly moving around a bit more, like he was just tired, but he was worsening within about 10-15 minutes. When we picked him up to settle him down, he had jerky movements and was involuntarily thrashing with flailing limbs, throwing his head around, arching his back. After discussing it over the phone with a doctor at the hospital, who didn't have any idea what was going on, we decided to prepare for a hospital visit and likely admission - during which, things deteriorated further. We couldn't hold him still or restrain him, and both my "medical" and "parental" anxiety was soaring. I knew it wasn't a seizure, as such - he was still conscious, answering my questions, making eye contact, but he was distressed and unable to control any movement. He stopped suddenly at about 70-75 minute mark, to our great relief. We took him into hospital anyway, thankfully, since testing showed his platelets were rock bottom, thus needing another urgent platelet infusion. They admitted Ned for observation overnight.
The next morning, though our paediatric oncologist wasn't entirely sure what the answer was, Ned was discharged home since he'd been stable overnight and his platelets had been topped up. Just as we were about to leave, however, he started having another episode, which the doctors then were able to observe. With a normal MRI brain (the next day), and everything else ruled out, it has now been labelled a very rare dystonic reaction to the intrathecal methotrexate (a chemo drug) Ned has been receiving weekly, under general anaesthetic. Dr John (our paed oncologist) has only seen one case of it before in his career. This, along with all the other "unfortunates", "bad news", and "rare reactions" we've experienced over the last 2-3 months is why we're becoming disheartened and more pessimistic.
Ned (and Seth) had to then stay on that day and night... coinciding with Lucy's planned adenotonsillectomy. I raced home, packed, took her into her hospital, and stayed with her for the operation, and overnight... making for an unusual situation where both Seth and I were in separate hospitals with each child for one night! We had a few video phone calls as a family over the following 24 hours. Needless to say, our dramatic, sensitive, quality-time-loving eldest child absolutely adored her one-night admission with the entailing attention and care, especially having one-on-one time with Mum - and the beautiful ballerina doll made and dropped off for her by a generous, creative woman. She seemed to think the nurses were there purely for her entertainment and social life. Although in a lot of pain ("Mummy, my brain hurts!!"), she enjoyed having very rare movie-watching time, nurses bringing her unlimited ice cream and jelly (even at 6am the next morning!), and, much to my amusement, she thought the most delicious meal she'd ever tasted was the white-bread-and-cheese-sandwich-and-tinned-tomato-soup delectable combination she was brought for dinner.
Fortunately, she's recovered very well. The surgeon showed her the adult-sized tonsils he'd removed, and reported fluid in her ear (which he drained) and a nasty left sinus infection - the answers to her ongoing congestion and deafness. She's still in some pain, but MUCH less nasal-sounding and sleeping silently. For us, we're thrilled that her behaviour has done a 180-deg turn! She's been just so lovely and sweet the last few days - possibly aided by a lot of one-on-one time with me.
My pregnancy, being largely ignored, is progressing smoothly as well - something we're enormously grateful for at this time. Vomiting has stopped, nausea has eased, and the kicks are frequent. I'm over halfway, and having my formal ultrasound this coming week (slightly later than required) - and for all of you want to know: no, we're not finding out the gender (just like our last two)... we quite like having a surprise at the end.
Even though we're housebound, we were very blessed to be able to spend a few days away "housebound" to a different house, courtesy of some very generous friends, approximately 45 minutes drive from hospital. It was near a beach, and despite the strict instructions for Lucy not to swim post-op, and Ned's water-incompatible plaster cast, we enjoyed some idyllic, sunny beach walks and quiet, uninterrupted play time. We were very tentative about going away, given Ned's susceptibility to infection and probable need for admission, but fortunately, during the few days we were there, only one morning's hospital visit was needed.
This week, Ned's starting back on a rigorous chemo fortnight, returning to the daily injections of a vomit-inducing medication, administered by Seth, and another medication that wreaks havoc on his cell counts. I'm also returning to work (tomorrow), on only minimal hours - to fit into chemo schedule, upcoming admissions, and the need for one of us to always be at home.
Having had time for some self-reflection over the last week, I've been able to take a breath, and consequently my (pregnancy hormone-fuelled) emotions have been rather unhinged... even just talking to friends has my eyes prickling. There is little in this world that compares to watching your own child suffer... it hurts every minute of every day. And, as his devoted parents, all we can do for him, other than prayer, is to enfold him in our profound love.