I composed this one a couple of weeks ago when we returned home, but haven’t been back to edit it or brave enough to post it. Some parts have been extraordinarily difficult to confront x
We’re home. Despite lockdown, it feels like utter freedom after being confined to just one room! There is nowhere we would rather be. Home is comforting, familiar and most importantly it’s together. We’ve all spent the last two and a half weeks aching for the other half of our family and it is such a relief to be back together again.
Being separated has always been one of the toughest parts of treatment, but this time was particularly challenging with extra restrictions in place meaning that only one parent could be present on the ward at any one time. A planned swap was allowed, but it had to take place away from the ward, and no siblings were allowed at any time. Where possible, we’ve usually attended Poppy’s routine appointments as a family, and even during an unexpected stay, the others would often visit, bringing comfort, joy and snacks to break up the monotony. During our six days in Gloucester, our only ‘visitor’ was my mum, who brought a much needed change of clothes for us both, once we realised that we were going to outstay the initial bag I’d packed. Welling up in the carpark at a socially distanced 2m away, I have never wanted to hug her harder, but we managed to resist and I wiped away my tears as I made my way back to Poppy.
Graham and I had planned to swap ‘halfway through’ Poppy’s stay, although that proved difficult to gauge and once things went from 0 to 100, I was reluctant to leave her side. Graham and Daisy had settled into a rhythm at home, and we felt it would be less disruptive for the girls if we maintained some consistency. We did manage two visits of sorts in Bristol. I left Poppy with the nurses and ran to the foyer to meet Graham, who made his way to see Poppy whilst I left the hospital with Daisy for some fresh air and cuddles. The first time, I didn’t take any money with me, so unable to pay for car parking, Daisy and I spent a happy hour on the pavement beside the car running to and fro and cuddling. Proof that it’s the company, not the location that matters. The second time, I left Poppy sleeping and warned Graham that she was extremely worn out. I wasn’t sure she’d wake whilst he was there, but he joined her for a sleep and felt much better for the cuddle and comfort it brought.
The morning of Friday 15th May started routinely enough in Gloucester. Poppy’s temperature was still over 40C for the 5th day running and she had required oxygen overnight. She hadn’t yet woken, when the doctors arrived on their round. I knew it was serious when they said we needed to be transferred to Bristol – we have always been told that as long as everything was going well, we would never need to go back there, as all her care could be given in Gloucester. The other warning sign was when her consultant said “I’m quite worried about her.” It is really hard to translate information to people at home – there is a responsibility to be accurate, but I’m also conscious of protecting them. I don’t mean by hiding information, as I’m always truthful in what the doctors have said, but I suppose I do try to compose my own fears to ease the worry for anyone else. I’m always grateful for Graham’s medical knowledge – he can read between the lines and asks questions I don’t always think of in the moment. Even so, I took a deep breath before phoning him, allowing the tears to pass so I could speak evenly. Poppy was also awake by this point, so the conversation was minimal to avoid showing my worries.
I was told that the ambulance to transfer us would arrive anywhere between two minutes and two hours later. I immediately got dressed and packed our bags. The only other time we have travelled by ambulance is when Poppy made the move from Gloucester to Bristol for the bone marrow aspirate which diagnosed her Leukaemia. I was told the same instructions then, with emphasis on it being more likely to be the longer side of that wait. I was in my pyjamas brushing my teeth whilst frantically throwing things in a bag and phoning relatives when the paramedics arrived after two minutes. This time, I was more prepared.
I was not prepared for the blue lights though. As we sped away from the car park of the hospital, and Poppy mentioned the siren, it dawned on me that it was for us. It was like an out of body experience, as my usual encounter of an ambulance is from outside of it, carefully manoeuvring the car to one side and hoping whoever it is for is going to be okay. Being on the inside, knowing that the world outside is coming to a standstill for your poorly child is quite terrifying.
We arrived in Bristol and were immediately taken for Poppy to have a repeat chest x-ray, as the one taken at her bedside in Gloucester had not produced a clear enough picture. After that, it was up to Caterpillar Ward and the room outside the nurses station. Again, more similarities with the the beginning of treatment when we were moved to the room outside of the nurses station for Poppy to have her first blood transfusion. It didn’t dawn on me until afterwards that time, but this time I was in no doubt that Poppy was there so they could keep a very close eye on her. I later learnt that the HDU had been prepped for her arrival, but was thankfully not needed.
I’ve put off updating the blog because the next part is very hard to write. That weekend is the closest I have ever felt to losing Poppy. She spent the majority of it fast asleep, whilst I sat by her side, watching her breathe into her oxygen mask and positively willing her to be okay. Just like in those first few days after diagnosis, the nurses in the night were unbelievably supportive. Not only were they doing everything possible to keep Poppy comfortable, they did the same for me, bringing tea, toast and hope. One even went so far as to promise me that Poppy was going to be okay and I clung to her words when the night enveloped me in sadness and terror. Somehow we got through it and by the time Monday arrived, after a weekend of amazing care and incredible medicine, I felt a lot more hopeful.
The next week was about managing Poppy’s pain, and slowly reducing her reliability on IV fluids and medication, to allow for the switch to oral medication and therefore home. After over two weeks of it, I had become so accustomed to wheeling the syringe driver with Poppy to the bathroom, that it took me by surprise when she peered at it and asked “Why are all the lights off?” My initial thought was panic, that it had run out of power and interrupted her carefully calculated medication. As I followed her line, I realised that she was actually unconnected for the first time in weeks and we hadn’t even noticed! Cue much laughter and the surest sign yet that she was on the mend.
When discharge day finally came on the following Monday, we left with two huge bags of medicine and a Poppy who was still very unwell, albeit absolutely delighted to be reunited with Daisy. So much so that they held hands across their car seats as they shared sandwiches and stories on the journey home. It was such a relief to all walk back through the door at home and I was pleasantly surprised at how well we all managed the adjustment to being home. Eating normally again has proved Poppy’s biggest challenge to overcome, and an initial loss of appetite was replaced with severe vomiting. She has been back in hospital to be reviewed twice since and the latest change to anti sickness medication seems to be doing the job.
I’ve spoken before of how strange it is to be ending treatment whilst shielding, as so much of it feels familiar to the beginning of treatment. We were even looked after by some of the same nurses and doctors, who remembered us just as we well as we remembered them. Another compliment to how well Poppy tolerated those early days, that she should be a memorable patient over two years later.
Despite the scare and the agonisingly close approach of the end of treatment, there are actually many things to be thankful for. Firstly, we have always been told that it could be very dangerous if Poppy caught chicken pox whilst immunosuppressed. If I had actually appreciated how dangerous, I think we would have had a much harder time making the decision to send her to nursery and school. It would have felt a much riskier decision and one I know for certain I would have turned over and over in my mind. Since she wouldn’t have been able to build immunity to it, Poppy could have contracted chicken pox multiple times throughout the last few years. I’m also glad that she didn’t catch this from one of her classmates. It actually appeased my own guilt to think that if I wouldn’t have blamed anyone else, why would I blame myself? It was unfortunate, but there was no-one at fault here.
As I said, a lot to be thankful for. That is easier to say now that we are past the worst of it, than whilst navigating the terror of being in it. We didn’t need this final reminder that life is precious and not to be taken for granted. Childhood cancer has already taught us that lesson and we certainly won’t be forgetting it. This additional stay in Bristol has brought our adventure full circle or at least to the full arc of the rainbow, which is not only so familiar to us now, but has been a symbol of hope the entire way through treatment.
Whilst building up Poppy’s strength, we’re also awaiting a new date for her final lumbar puncture and the removal of her port. We’ve waited two years and two months to reach May 2020 and it’s not really held up to it’s glittering promise. End of treatment won’t even happen in May at all! As ever, we look forward to the day when active treatment is behind us and would like to extend our heartfelt thanks to everyone who has been rooting for us. You’ll never know quite how much your gestures of kindness have meant to us all. Whether you joined in the fundraising quiz our community organised for Poppy or sent one of many beautiful messages, cards or doorstep deliveries such as the jar of sweetpeas to welcome us home – thank you from the very bottom of our hearts x