Interim Maintenance

This week marks the beginning of the 3rd phase of treatment, known as Interim Maintenance. I’ve heard this described as a break and whilst it’s certainly some breathing space from the hospital, I’m not sure a break is the most accurate description. We’ll have planned visits to hospital every fortnight, with visits from the community nurse in between to draw Poppy’s blood and check her counts are high enough for her to endure the treatment. If they’re low, it’ll mean a slight delay in proceedings until she’s considered well enough to go ahead.

If things go as planned, we’ll see a lot less of the hospital walls during these two months. There’s still a cocktail of drugs to administer at home though. Poppy has shown a little resistance in taking these this week, which hasn’t surprised us. After almost two months of diligently doing everything at the first time of being asked, we don’t blame her for feeling a bit fed up. We’ve re-introduced a sticker chart, like we did at the beginning to offer some gentle encouragement. The reward of a gift from the fairy box looms at the end of each row of 8 stickers. On the day we started, Poppy earnt 7 stickers with an additional 5 beads of courage. Her fairy box present was awarded after breakfast when she took the 1st of the 5 medicines on the next day’s schedule.

It’s hard to explain how much care Poppy needs. Caring for two healthy children can be draining anyway, constantly splitting your time between their needs but this is another level of care. Poppy has lost all of the independence she’d gradually built up and her lack of mobility makes it impossible for her to do anything without asking for help. That includes basic tasks such as dressing herself and visiting the bathroom, as well as how to entertain herself. She can no longer meander over to her play kitchen and begin spontaneously cooking an imaginative dinner or choose an elaborate outfit from her much loved dressing box. Of course, she can still play with those things but she’s lost the impromptu ability to flit about and play as she pleases, so they hold less appeal. She’s also denied the ability to assert her cheeky toddler persona in the usual ways…running away from us giggling as we try to encourage her to get dressed in the mornings or doing anything but put her shoes on so we can leave the house. She’s ruled by our decisions more than ever, and the lack of choice, freedom and ways to make that known must be immensely tiring.

Her frustration shows through sometimes, and the screaming which follows is heartwrenching. It’s so unlike the Poppy we know, who has always been so very well behaved, erring on just the right side of cheeky to be amusing and delightful. It’s times like this that I really try to imagine her pain and what she must be feeling, but it’s always in vain. Poppy has been able to make herself understood and articulate herself very well from a very young age, but even with her excellent speech, describing this is too big to comprehend. We often ask her if something hurts and are met with a vehement shake of the head. I wonder if hurting all over and that general rubbish feeling it brings is something close to what she really feels.

Monday was the first official day of Interim Maintenance. We returned home from hospital that evening, expecting to be back in two week’s time for the next trip to theatre. Instead, we travelled the road back to Gloucester at 10pm that very same evening after Poppy spiked a high temperature. After an overnight stay, we were released the next morning to recuperate at home, or rather at my parents house with big hugs and cups of tea on tap.

Upon learning we’d be heading back to Gloucester, Poppy squealed “I’m excited to sleep at the hospital!” Despite some slight reluctance with her medication, it seems the novelty of Leukaemia hasn’t worn off quite yet x

Poppy’s current sticker chart is a bit special, courtesy of some personalisation by her Grandad! 

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