A weekend of two halves

Poppy bounced back from her course of steroids last Friday and woke up full of energy, so it was a good opportunity for us all to get out of the house for a wander around the trees at Westonbirt Arboretum. Not quite the calming experience it usually is, as Graham forgot his annual pass and we were greeted by an unforgiving member of the welcome team. I know we slipped up by forgetting the pass, but I’d like to see a little bit of trust involved and a back up plan for when genuine people make mistakes. It was a frosty start, which we managed to shake off without causing a scene. I came very close to mentioning that it was Poppy’s first proper day with her family after spending 3/7 days in the hospital and the rest lying on the sofa crushed by the muscle wasting effects of steroids, but there are some days when we just don’t want to get into the whole thing and it’s better dealt with by a shrug of the shoulders and a roll of the eyes between ourselves.

That evening I got back in touch with the lovely couple who run Artisand UK to thank them for their recent donation to Poppy’s GoFundMe page. They were thrilled to hear from us and mentioned they would be at a nearby charity fair in aid of CLIC Sargent the following day, so we decided to go along in support and give Poppy another chance to complete a sand art picture. This was an activity we discovered by chance at the Cricklade Festival in June and Poppy has since completed a picture in hospital too, with the set she was so kindly gifted by them. Poppy was delighted to make another one – the large bowls of sand in so many different colours make it very appealing! We had a lovely time in the sunshine, chatting to Doug and Sue about Poppy’s progress and their own granddaughter who is a very similar age. It was lovely to see them again and they very kindly gave Poppy some more pictures to enjoy, as well as one for Daisy, which was so thoughtful.

After a cooped up week, it was really nice to be out and about again and we enjoyed the time spent together at the fair, especially knowing all the money was going to a charity who have supported us from day one of our adventure with cancer. We bought raffle tickets to support the event, and it was a bonus to win a gift voucher for a local company making unicorns out of fabric scraps. In her joy, Poppy exerted herself and she was very tired by the time we headed back home. Her determination never ceases to amaze me and wherever possible, she remains as independent as she can. She is not so dogged as to refuse help, but will often attempt everything herself before accepting assistance. A restful sleep followed that night, before a family swim the next morning. Poppy seemed very tired again afterwards but we assumed this was due to the happy time she had spent splashing in the pool, so we weren’t overly concerned when she settled for a long nap at home.

We knew ahead of time that Delayed Intensification would challenge us all again, but nothing quite prepared me for being back in this intensive bubble. Throughout Interim Maintenance, Poppy was gradually feeling better each week, gaining strength and expressing a little more of herself again each and every day.  A far cry from the slippery slope of the early days when each week she dipped a little further from the healthy child she’s always been until this point. We’re back on that slope again now, with some tough challenges still to come. There’s a reason we made no plans for August. We knew that our day to day mentality would be more important than ever as there is no way of telling how this period will affect Poppy and family life as a whole.

On most evenings for the past few months, we’ve discussed possible things that we might do the next day but we no longer take anything for granted as we know how quickly things can change. This week’s potential activities included a stay and play at a local preschool, a long awaited catch up with some friends and a forest school outing run by the local council. As it happened, we didn’t make it to any of these as we spent Sunday until Thursday in the hospital. When Poppy woke from her nap after swimming, it was immediately obvious that she was distressed and unwell, and our thermometer confirmed she had spiked a high temperature. We had been moments away from sitting down together to enjoy a roast dinner, so we packed a portion up to travel with us and made our way into hospital where Poppy was checked over and hooked up to IV antibiotics to bring her temperature back under control. Blood cultures were taken and sent to the lab, where they are monitored for 48 hours to see if they grow any bacteria pointing to an infection. On this occasion, the lab results showed there was a bug growing so we needed to stay until this developed more and the medical team were able to determine how best to proceed.

After two solid days in the same room, I swapped places with Graham and left the hospital for an overnight break on Tuesday evening, leaving Poppy to stay with her daddy. I was uneasy about leaving her, as I’ve been by her side throughout all of her overnight stays and all bar one of of her day visits for treatment. It was a strange feeling to be away from her. Realistically, I was drained and exhausted and knew the break would give me some energy to come back in the next day feeling much more refreshed. I tagged along to a cinema trip my mum had preplanned with her friends, and thoroughly enjoyed the evening, sleeping really well as a result. I woke early on Wednesday, and popped up to M&S to gather some supplies for the picnic lunch I’d promised Poppy I would return with. She hasn’t been eating much at all this week, so I was shopping for treats to tempt her with. I worked through my list and paid for my shopping, before becoming engulfed in a huge wave of sadness, which seemingly came from nowhere. I pushed my trolley gently to one side, covered my mouth with my hand and sobbed huge big tears with my shoulders heaving. A member of the management team spotted me, and once able to talk, I did my best to explain the reason for my tears, not getting much further than “my three year old daughter has cancer” before she bundled me off for a cup of tea and a chat in the cafe. How very English, but a cup of tea, a cuddle and a comforting chat settled my wobbly world enough for me to carry on once more. I think it was the normality of everyone going about their daily business which pulled the rug from under my feet again. In the hospital, we’re in this bubble of new normal, where other children have cancer too and the parents discuss neutrophils and red blood cells as casually as the people in M&S discussing their recent holidays. In the hospital we’re just like everyone else there, but walking around M&S I felt like an imposter waiting to be exposed. It’s a strange feeling to be wandering around a world which you feel so disconnected from. At times like that, I’m functioning only on a very basic level without being conscious of it, and it doesn’t take much for me to find myself experiencing the disconcerting and disorientated sensation of being vastly overwhelmed. Usually I can calm this feeling with a few deep breaths, but there have been two occasions in public when the tears have come flooding out. One being this visit to M&S and the other best forgotten!

Playing with Daisy lifted my spirits and my mum gave us both a lift in to the hospital, which I was grateful of as I didn’t really feel up to driving that same road again. Whilst Poppy still didn’t eat much of her picnic, it was a pleasure to be together again and we had a happy afternoon playing, before it was time to be parted again. My turn to stay again, and I was glad to be by Poppy’s side once more, even though I recognised that the short break was beneficial to us all. Graham and Poppy had enjoyed the one on one time spent together, just as I had enjoyed spending time alone with Daisy. Poppy was visibly brighter, even if the complete loss of her hair for the second time has made her seem more vulnerable and tiny again. The hair loss was quick this time, with the first handfuls falling out on Saturday afternoon and the rest of of it gone by Wednesday morning. Though perhaps I should say that this is Poppy’s first actual loss of hair, as when recounting the first time, Poppy told me proudly: “My hair didn’t fall out. I had it cut off.” A subtle distinction, but one I’m glad she’s picked up on.

I knew Poppy was feeling better as she was back to enjoying craft activities again after spending the first two days in hospital sleeping and resting. Painting and playdoh were on the agenda, and it was reassuring to see her taking an interest in these activities again. The play specialists had to return and refill her paint and paper, as the boost of energy she received from the antibiotics meant she became quite the prolific artist! It’s evident she’s missing her friends, as of her own accord, she announced that she was going to paint pictures for them. Unfortunately, anything we’ve pre-arranged recently hasn’t worked out due to Poppy not being well enough, and I’m missing my mum friends as much as she is missing their offspring!

Poppy ended up being released from hospital on Thursday afternoon, after being rewarded for her improved health with the two chemotherapy drugs she should have been given earlier in the week if she had been well enough to receive them. Dancing her way out of the hospital doors with her teddy bear and unicorn balloon, Poppy delightedly exclaimed: “I love fresh air!” It was straight back home to play outdoors and concoct some recipes in the outdoor kitchen, whilst I took the opportunity to stretch my cooped up legs with an exercise DVD. Daisy was delivered home from a stay with her grandparents and all was well in our world again x

Straight back home to play outdoors!

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