The Big Feastival and another LP

After our double hospital day last week, when we travelled 2.5 hours from Carmarthen to Gloucester and eventually made it home around 9pm, we were unsurprisingly exhausted. I bathed the girls, whilst my lovely mum popped to the fish and chip shop to reward the girls with the foodie treat we had missed out on our seaside holiday. As ever, Poppy always knows how to celebrate, and I had to giggle when I heard her organising Daisy into their only pair of matching pyjamas, complete with necklaces and hair bow accessories. She even decorated the table with candles and random ornaments. I don’t know why her joie de vivre still surprises me, but her incredible ability to gauge the mood and tone of her environment is astonishing at her tender age – no-one had really spoken of it being a celebration, but yet she picked up on that in her own special way. It reminded me of her baking a cake when she was first released from Bristol Children’s Hospital, instinctively knowing that we had something to celebrate. A happy, joyful evening followed as we tucked into our late dinner and fell into our own beds. Unbelievable that a day of so many twists and turns, and grey walls should end in such joy, but that’s Poppy for you! Graham arrived home just in time to see the girls before bed and was met with delighted smiles and open arms.

I woke the next day, feeling rested but tearful. As I’ve said before, it’s often after an event has happened, that I’m crushed by the full weight of emotions. The knowledge that we were home but returning to hospital also felt like the chapter wasn’t quite closed yet and I was nervous about what might be to come. Graham took the girls in, to give me a break at home, which was a welcome relief. I couldn’t quite settle though and found myself obsessively cleaning and tidying up in an attempt to quiet my busy mind. The news from the hospital when it came was positive – the repeated bloods had shown no sign of the possible line infection being investigated and Poppy’s counts were considered well enough to proceed with the chemo which had been slightly delayed earlier in the week. So essentially, Poppy’s good health was rewarded with a dose of chemo and a course of steroids to follow that evening. Just what we all needed! Tone can be hard to judge, and that should be taken lightly – of course, it is a good sign that Poppy was well enough to continue chemo, but it’s hard to handle on top of an already exhausting week. We usually prepare for steroids by going to bed early, setting our expectations low and trying to avoid too many busy tasks, but that wasn’t an option this time around. As expected, the next few days continued in a blip of disjointed survival. The sort of days where you just have to get through them to the best of your ability, safe in the knowledge that harmony will eventually return to the household after a brief settling in period. Despite the offers of help, we deemed it best to go it alone. We felt the girls needed the safety and security of being reunited with us together at home, and the tension and anxiety we were feeling wasn’t very inviting for company. The feeling passed, the week got better and we began to believe that we might make it to The Big Feastival after all.

A bit of background here – we rarely book events in advance, either forgoing the advance ticket price for the convenience of paying on the day, or as in the case of LEGOLAND last year, buying tickets at five to midnight! Unfortunately, that wasn’t possible on this occasion, as festival tickets usually sell out before the event itself. We made the decision earlier on in the year to go for it – to book the tickets and hold onto the hope that Poppy would be well enough when the time came. The risk was minimised by the Feastival offering free tickets to carers attending with a blue badge holder, meaning that we only paid for one adult and a small fee for the girls to camp. Another benefit was the festival only being around 40 minutes away from home, so there was reasonable scope for Poppy to be able to attend some of it, if not all of it. As it happened, good health coincided with beautiful weather and our contingency plans were uncalled for. Hooray!

Three days followed of food, music, workshops, crafts, cooking, dancing, sunshine, kindness, glitter, camping and laughter, lots of laughter! Soothing for our souls and nourishment for our appetite for life, I left feeling well rested, full of joy and very proud of our family. There were tired tears and grumpy, tetchy moments too – we are human! But for the most part, it was a sing song weekend and one we’d love to repeat. Even with three days there, there was so much to see and do and we could have happily spent another weekend there soaking it all up. Highlights included Poppy cooking herby breadsticks with the NEFF team in the Little Kitchen and Daisy living her best life on Daddy’s shoulders laughing along to Grandmaster Flash. Fun for the adults too with a Warners Gin tasting – the first time I have ever enjoyed gin (this might be a slippery slope!) and some amazing idea workshops from The Positive Planner and Nourish. It was really engaging to meet people so passionate about the work they are delivering into the world and I can’t help but feel very positive from these experiences.

We painted our faces with glitter, made flower crowns, rode the Helter Skelter and generally, just let go and belonged. Worries from the previous weeks floated into the light breeze and we slept restfully and happily. The universe was on our side this weekend. We set up camp in front of the music for Saturday evening, and I took Poppy to a dance tent as requested, not knowing that shortly afterwards Graham and Daisy left in search of the loo, leaving Uncle James to guard our belongings. With no prior agreement or arrangement on time to meet back, I carried Poppy back to base when she’d grown tired of dancing, only to collide so heavily with someone, it almost caused me to fall over. Imagine our surprise, when out of the 20,000 or more people there, I looked up in shock to apologise and found we had literally bumped into Graham and Daisy! A serendipitous encounter which left us all smiling and laughing.

Straight back in at the deep end on the day after the festival, as we headed to hospital for Poppy’s 13th Lumbar Puncture (LP). I actually had to count her square tortoise shell Beads of Courage to arrive at that number. The medication and procedures which were so alien to us at the beginning of last year have now become so commonplace that I have lost count of them. The only reason the number was on my mind at all is that several of the recovery nurses asked me how many Poppy had experienced now, and that’s when I realised I didn’t know. I do know however, that a number which has now become far more significant than how many Poppy has had, is how many she has left. Three. Three lumbar punctures in the next nine months of treatment. A tiny number to go, when you account for that all has been before. We are counting down. We are marching onwards. Always onwards x

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