I haven’t yet managed to organise all of our experiences from the first few weeks in hospital into a coherent post. I filled a notebook with scribbled ramblings in the sleepless nights during that time, but the daily happenings of tests and treatment and the energy they consumed prevented me from assembling anything near a picture of what we were going through. By the time I’d started writing the blog, it made sense to write about the here and now, rather than the days gone by. I’m aware there’s a big gap from those early days which leaves things a little hazy in the timeline of events, so when I can, I’ll try to fill in some of the details.
Phew. What a week. Like the petals plucked from a flower in a childhood game, we’ve had a good day, not so good day, good day, not so good day, good day!
Dexamethasone has become a word I dread. The name of the steroid medication Poppy took for the first five weeks of treatment, it reared it’s ugly head again this week as we began a new 5 day course. I was warned from the beginning that the steroids were the worst part of the treatment…by the doctors and nurses, as well as other parents of children who have undergone this and by Graham who has experience of them with his own patients. Somehow it’s only through my own actual experience that it has dawned on me what everyone was talking about. There is quite simply nothing that could have prepared me for what was to come.
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.
A long pause between posts this time. Last week was so full of family life, that I didn’t find the energy to write. I prefer to formulate each post in one sitting if possible, rather than adding snippets here and there. Writing helps me lighten the load I’m carrying, and sometimes I don’t know what direction my thoughts are going to flow in when I start writing, but I always feel better after releasing them. Some posts tumble out of my mind without much thought and others take a little longer to take shape. Usually it’s the emotive writing which spills out more easily, but it’s important to me that I chronicle our journey honestly, and that means the highs, lows and everything else in between.
Another Friday night, another admission to hospital. A shorter stay this time and we were released on Saturday afternoon, once the doctors were satisfied that Poppy’s temperature was under control and she was well enough in herself to recuperate at home. We were due to attend a 3rd birthday party later that day, which I had been really looking forward to. We’d received the invitation before Poppy was diagnosed, so we knew it might be hard to attend, but all the signs had been pointing the right way this week until that additional admission.
Paediatrics is unlike any other experience of hospital I’ve had before. Not that I’ve spent much time in them as a whole. My experience is limited to visiting poorly relatives and of course, giving birth to our two beautiful girls. There’s definitely a different feeling here though, as if the children and their interests come first, and their illness second. Like the time Poppy interrupted a discussion with the doctors on their morning round to ask if she could go to the park, and the lead consultant sat next to Graham tapping her phone, showing him how to get to the nearest one. Or the many times anyone enters our room while we are reading, and waits patiently for us to finish before resuming their duties. Even joining in with their favourite parts on occasion, as with the appearance of the Gruffalo fish in ‘Tiddler’.
Things turn on a penny around here and our week’s been on the up since being released from hospital on Monday. Of course, we were back in on Tuesday for a planned dose of chemo, but all went well and we were discharged again in time for lunch. We spent a delightful afternoon soaking up the sunshine (in the shade!) and the atmosphere at The Village Pub, Barnsley. The food was delicious, but it was the staff who made the difference to our day by being friendly and attentive, going beyond the usual courteous enquiry to show genuine interest in making conversation. They brought cushions for Poppy’s chair to make her more comfortable, and upon learning where she had spent the morning, produced two scoops of strawberry ice cream on the house.
Whiling away the time in hospital, I thought I’d focus my next post on giving blood and the importance of doing so if you’re able to. In my experience of talking about this so far, many healthy people don’t donate because it’s simply not on their radar to do so.
What a difference a day makes. Famous last blog words those turned out to be. It seems our adventure is taking us on a rollercoaster ride this week!
Friday night should have finished up with the careful packing of a picnic ready to take to Cotswold Wildlife Park today. Buoyed by our day out on Thursday, we thought we’d reschedule the trip we’d missed when Poppy was admitted to hospital the first time back in late March.
Days like today are what life is all about. Singing, laughter and sunshine in the company of some of our dearest friends. Abandoning the house after lunch in favour of a spur of the moment trip to Westonbirt Arboretum. Making the most of the sunshine in every sense of that sentiment and finding our calm, happy place amongst the trees. With Poppy in good spirits, today was the day for mini adventures and family fun.