I spoke too soon. After commenting about our ‘normal’ phase, we’ve just had almost a week in hospital. *massive sigh….*
So if anyone is feeling trapped at home during this isolation, I recommend a few days stuck in one room with a window that you can’t open. Being back in our house now feels quite luxurious. I can make pots of coffee (whenever I want one!) and cook vegetables that don’t become squishy, tasteless mush. Wow.
I knew it was coming. Joshua’s treatment has stepped up (phase 4, see here). It’s the second wave of heavy-duty-drugs to stamp out the remaining leukaemia cells. The consequence of this intense chemotherapy makes him very vulnerable to infection.
A week after an infusion, he started being a bit lethargic, unsettled and clingy. His temperature then started rising during the day. By suppertime I could feel he was hot and the now-essential-household-item (thermometer) declared him 37.9 degrees. Once he hits 38 he has to receive treatment, so I started packing our bags for a trip to A&E. It’s better than waking up at 2am and having to go in then. There’s a fighting chance we’ll arrive at a room on Starlight ward before 11pm and get some semblance of sleep over night.
Obviously at any time, going to live in hospital isn’t a welcome thought. Particularly at the moment, with a pandemic ravaging the globe, hospital really is the last place that I feel like hanging out. But he has to go.
I realised, looking back over the last 5 months, that all holiday periods – Christmas, February half term and now Easter – have been spent in hospital. Having to be admitted, is now just a feature of our lives and will be for years to come. But just because it’s expected, doesn’t make it any better.
Joshua cries and shouts anytime someone in a uniform comes near him now. Shit things keep happening to him, and he doesn’t understand why. He spends days of his life stuck in a room, starved of friendships and being hurt by needles.
On some occasions such as this, he’s not even that unwell, which perversely is harder for us to manage him. How do you keep a busy, not-really-that-unwell child happy with only Andy’s sodding Adventures for 12 hours on repeat. Standing on the window ledge, face pressed against the glass to get a view of the commercial bins being emptied out, was the highlight of our visit.
We are waiting… Waiting. It seems like our whole life is now waiting.
Long stretches lying down in beds, staring at prefabricated ceilings. Just zoning out. Waiting to speak to a consultant. Or a nurse. Or for an operation. Or to go home.
We were about to go home, his temperature had returned to normal. But then there was an aberrant spike. Oh no! Bag packed, then unpacked. Another 24hrs. Waiting.