The bump in the road was inevitable. We’ve had a fantastic summer, filled with adventures, but as the weeks without any unexpected hospital visits stretched into months without, we knew it would happen again sometime. Unfortunately, it happened not long after arriving on holiday!
A reminder of how quickly things can change, Poppy was fit and well on the day we left for Wales, but faded the next day, so I unpacked the thermometer which goes everywhere with us and found her temperature was 37.8. Not quite the 38 needed for hospital, but certainly on the rise. The advice at this point is to check again in half an hour. We were just about to leave for a walk on the beach, so we stalled long enough to check again and found it had come down slightly, so stuck to our original plan. I’m so glad we did! It was the only real holiday moment of the holiday. We had a wonderful afternoon climbing rocks , splashing in the sea and visiting the lighthouse and lifeboat station. I went to bed early, expecting an eventful night (a temperature on the rise rarely settles completely, it’s more of an early warning signal of what is to come) and was surprised to wake with the light flooding through the curtains. That peaceful scene turned out to be short lived, as I heard Poppy coming up the stairs with my mum in search of the thermometer. I took one look at Poppy and knew from her glassy eyes, mottled complexion and unsettled mood, that we were facing a high temperature.
Hospitals in the UK have an agreement with each other that allows children undergoing cancer treatment to travel around the UK on holiday. Every time we stray from our local hospital, we must inform our community nurse where and when we are going, who in turn lets the relevant hospital know that we are in the area. A letter is sent containing vital information such as Poppy’s latest blood results and the size of needle required to access her port. We’re also given a copy of the letter, with contact details of the nearest oncology hospital should we encounter an emergency situation. A temperature of 38 or above is in Poppy’s case, an emergency situation. Being immunocomprised, a high temperature could be the first sign of a potentially serious infection, that could lead to sepsis. The chemotherapy Poppy has received has wiped out the immunity she originally received from her childhood vaccinations, so she will need these to be redone when she finishes her treatment. In the meantime, Daisy has received a chicken pox vaccine (free of charge – thank you again NHS) to minimise the risk of her bringing that particular infection home.
Back to that morning in Wales, and you would not believe the speed at which Poppy accepted that we would be going to a holiday hospital and not heading off in search of ice creams on the beach as planned. Her bravery and sweet nature undoubtedly make this much easier for all involved in her care, but it also deeply saddens me to think of all that she copes with in such a mature way. No child should have to put up with all that she does. Daisy neither. We all made our way to the hospital and Daisy happily adapted to the change of plan by seeking out the playroom with her grandparents while I stayed with Poppy in triage. Information was gathered, calls were made and Poppy’s port was accessed. Bloods came back several hours later, with the good news that she was not neutropenic, but that the 48 hour rule for a minimum stay whilst cultures were grown in the lab would still be observed as per the protocol. No surprises, but you never let go of hope during these situations, and I had hoped that somehow we would still see out some of our holiday as per the plan, but it wasn’t to be. Two days followed inside, with visits from my parents and Daisy, bearing gifts of LEGO to break up the monotony of the IV antibiotics and general hospital routine. Poppy coped remarkably well in the new setting, quickly adjusting to the little differences from our home hospital. Nurses are lovely everywhere and we were well looked after during our stay. Most notably for me during the second night of being unable to sleep between the hours of 2 and 5am, when the nurse brought me hot buttered toast and a cup of soothing tea. In that moment, it felt like the best meal I had ever eaten.
Those preceding hours awake were spent worrying, not just about Poppy, but for everyone else too. The holiday was interrupted for everyone – it was hardly a picnic for my parents to be taking care of Daisy and attempting to continue their holiday whilst simultaneously worrying about their other girls in the hospital. Or for Graham to be back at home, at work and wondering whether to drive down and see us. But there’s also all the wider worry for everyone else. Once the worry box has opened, it all comes spilling out. I spent those hours thinking about all the other children facing cancer. And particularly, all the children no longer lucky enough to be receiving treatment. Those who have received the dreaded words which contain no more options. I know some of these families, and there are many more I don’t know, but it doesn’t stop me worrying about them at times like these. Because ultimately, no matter how traumatic our life can sometimes feel, there are many, many families worse off than ours. That’s not to say I am comparing our cancer to theirs, or to belittle our experience, but to remind myself to remain grateful. As ever, for the life-saving treatment Poppy continues to receive. There is something strange about waking up in a hospital bed when you are not poorly yourself. When I woke the next morning after finally falling into a restful sleep, I genuinely fell grateful to be alive. To have my toes still wiggling, arms to stretch and a beating heart to start another day on planet Earth. It may sound overly sentimental, but I can’t apologise for the truth!
On the afternoon of our 3rd day in hospital, we were transferred to Gloucester to be overseen by Poppy’s Consultant. Bloods were taken and cultures repeated, and after several hours of observations we were eventually (and surprisingly) allowed home to recuperate with the proviso of returning for further review the next day. I say surprisingly, as there had been talk of beginning a two week course of IV antibiotics to ward off a possible line infection, so my mind had gone into overdrive accepting our fate, which would have meant missing out on The Big Feastival and potentially crossing into Poppy’s first week of school. Of course, Poppy’s health is our ultimate priority and though it would be disappointing to miss out on these things, we fully appreciate everything which is done to keep her safe and well. It doesn’t make the disappointment any less disappointing though!
It has now occurred to me that Poppy may not be well enough to start her first day at school alongside everyone else. I can’t quite explain why that matters to me, but it does. I am not concerned for one moment about Poppy’s academic ability or her attendance record. I don’t think she’ll struggle to socialise or make friends. Her first day at school will be her first day at school whenever that happens to be. But after everything she continues to face, it would be nice to follow a smooth pathway for the first week at least! To be one of the crowd. To make her first steps alongside the shiny, new shoes of everyone else. Shiny, new shoes which have now been purchased to much delight. I am not exaggerating when I say that Poppy literally jumped for joy when she first laid eyes on the starry, patent shoes she has been wearing in around the house. My heart soared when they had her size in stock and we are now all looking forward to the day when they make it out of the house for the first time. Whether that’s a week today alongside everyone else or another day entirely! x