How is Poppy?

How is Poppy? It’s a question we’re asked daily, with increasing frequency as our story travels, and one I always struggle to answer.

Poppy is brave. Not just the bravest little girl I know or the bravest three year old. But hands down, the very bravest person I have ever met. To go through all of this and still come out smiling is an incredible achievement at any age and one we are so proud of her for.

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Be kind, always

I’ve just got back from a run. A giant strides, air in your lungs, music blasting type of run. The sort that makes you happy and hurt in equal measure.

I had zero motivation to go this morning. The weather is grey and drizzly, and not the sort of weather which typically  inspires me to get outside. The only thing which got me tying up my trainers was knowing how much better I would feel when I got back. Not just from having moved my legs, but having nourished my mind too. Running helps me organise my thoughts and makes the world seem brighter.

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Dear Daisy

So much of what I’ve written so far has been about Poppy. In those very early days, her illness consumed my every moment. Certainly for those two weeks we spent in hospital, when I barely left her side for the entire duration of our stay.

The subject of today’s post is another small very important person whose life has been tipped upside down overnight. It’s only fair that her own acceptance, bravery and ability to adapt gets a mention here. Our Daisy. The youngest member of our family, just a few months past her 1st birthday. A jolly, little soul, who just like her sister before her brightens the path of everyone who encounters her.

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Moving Wards

When we first arrived in Bristol, we were placed on a medical ward, used to dealing with all sorts of ailments. Once we received Poppy’s diagnosis, we were moved upstairs to the Oncology floor. Initially to the Adolescent Ward (35) and eventually to our room on the Children’s Ward (34). The difference in the surroundings upstairs was remarkable. Heartbreaking and inspiring all at the same time, these wards cater to long term young patients and the quality of the setting is astounding. The snug, lounge and atrium for the teenagers more familiar in a youth club than a hospital.

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Things I’ve learnt

Feeling Positive

The following post was assembled into a coherent piece after a night of messaging Graham back and forth from my hospital bed to his Home from Home. A change of tack after the confusion and shock of the previous days. A new stage of acceptance, a way of looking forward and dealing with the lemons we’ve been given.

Some of what follows is his words, jumbled up with mine to form our new family way of thinking. We’re in this together and will be walking on, hand in hand…

Friday 30th March 2018

I had a really positive day today, my best yet.

The first time I really felt like we absolutely CAN and WILL do this. Our lives will be different than planned, but no less amazing. We will learn to spot opportunities and take advantage of new situations. It will change us, stretch us, exhaust us, but ultimately expand our lives.

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Why the blog?

I’m not sleeping very well at the moment. I drift off with Poppy but am wide awake by the time the nurse comes to check Poppy’s observations at 2am (temperature, blood pressure, sats, respiratory rate, capillary refill) and my whirring mind won’t switch off. I spend the time sending messages, updating everyone on our day and it occurs to me that I’m copying and pasting the same message several times over for hours on end. It’s helping me process my thoughts and look after those at home, but it’s also exhausting and overwhelming at times. An idea for a digital diary is forming, a way of keeping everyone informed in one place. Perhaps one day, something to look back on, when all of this is over and it’s just a minor detail in an otherwise bright and happy lifetime.

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