We had visited UCLH in London and spoken to experts about the god awful side effects; we'd visited manchester and saw where would be living for the best part of two months and visited the hospital we'd be visiting, daily. We'd been given the tour around Manchester's Children's hospital, and we were all booked into The Christie for the first treatment to start on the 4th March 2020, the night before we were due to leave Southampton, Dexter's brothers came to visit.
We were in Southampton general for the three days prior; Dexter was having his fourth round of Chemo. It was starting to take its toll now, making him sick and he was exhausted. I had packed bags and left them to be picked up by the driver, Steve, who had kindly agreed to drive us to manchester.
Dexter was weak and tired from the hard-hitting round, he snuggled Crackle and cosied down for the journey in his spiderman duvet. He slept. I chatted with Steve, spoke about prospective baby names and upcoming plans, I was finally better, so I was no longer coughing whenever the heating was on, and despite the six-hour journey, it went quick chatting. We had a few stops; it was when we stopped that Dexter was really sick.
Arriving in Manchester, with a thin drained little Dexter, I was three and half weeks off having a baby, and we were thrust into the loneliness of life at Staycity. Two days later, our weekend was made by having Dexters best friend Herbie and his parents, my friends coming to stay with us. Looking back, this first weekend, only two treatments under our belts was that right time to visit. He was still animated, and the treatment was still new enough to have not taken effect.
The weekend past so quickly, but that weekend it felt like a slog getting back into treatment.
Each morning we would get on the 6:45 shuttle bus to The christie. We were on an early schedule, always due to go down by 8, but rarely was the treatment on time. We would rattle about on the bus seat, sickness drugs in the system, empty bellies and a sick bucket firmly on his lap, Crackle by his side.
The hospital was nice, a huge playroom, where the obs would be taken and Dexter would often be their first, meaning he could be first to get onto the PlayStation. The signal is terrible in there, because of the machines and the lead-lined walls, but I would sit and pitifully watch the other children and parents mill into the unit. Sometimes I would be brave enough to talk to the other parents. Still, I started to do this less and less as our time there continued, I hated hearing that it was preventative treatment for many, that they had had their tumours removed. In contrast, Dexter's tumour would never be removed, it was his life-saving treatment, and if it failed, he'd be lost to us. None of the children were lucky to be there, all heartbreaking stories, but all of them seemed a little luckier than my son.
I was emotional most mornings as we padded through the locked doors down to the theatre room and into the theatre. They would remove his t-shirt, Crackle hugged tight to his neck as I held his hand, and then he would chat before he drifted into a slumber. I never felt emotional at this point; it was another treatment down, another 27 days to go.
I had roughly an hour and a half before he would be in recovery. I would head next door into the main hospital; I'd sit and eat cake and ring family members updating Jack and my parents each morning, while 'people watching' over my tea. I'd watch enviously of people chatting with loved ones, and I would sit alone, day after day, hoping that these days will save Dexter.
Every time I would come into recovery, my heart would sink. As though the hours before had distracted me from reality, and the real reason I was sat eating cake, lay, fragile and tiny before me. I would never wake him. I would just sit and wait two hours somedays for him to wake. As long as he was sleeping, he wasn't in pain with his mouth, struggling to eat and drink, his skin and eyes weren't sore, and I felt like it was a small kindness that he didn't feel the struggle of his life for that time. This was when I felt emotional.
When he woke, Dexter would drink milk and eat cornflakes. His skin was doing well, a small glow to it, but no cracking, so all was looking good, he was tolerating the treatment well. Every day I wondered what it was like in there, his body in the large machine with the large resin moulded mask over the top half of his body, beams of radiation, manoeuvring around my precious babies face. I wanted to to take it from him, do all the unpleasant things, I wanted this to end.
This was just the beginning and each day seemed long. I would take him back to the hotel on the little shuttle, together, hand in hand we would walk to the small m&s or the Tesco's next door in Picadilly station, and I would gather any ingredients for any meal he thought he fancied eating. Some days I would cook three different things I hope that one would take his fancy, and in the early days, haddock bake, a roast, fish finger sandwiches would all work, but as time went on, food was too much of a struggle and ice cream, yoghurt, sweets couldn't even tempt him.
The afternoons seemed slow. We would make it home, faff over food for a couple of hours, I would bath Dex, and we would crawl into bed early. Never wanting to sleep alone, still to this day, Dexter never wants to sleep alone.
Bening nine months pregnant and without our large family we both found it easier to sleep, to let the exhaustion of the task at hand wash over us rather than stay awake, longing to be back home among the busy household we were both so used too. Once Dexter had fallen asleep, I would text Jack, for hours, we would discuss the pain and heartache we felt, trying to fend off negative thoughts and only think the best of the future. Some nights the pain of thinking of our life without him, made my chest physically ache and I know that dying of a broken heart must be a true condition because though my heart has healed, during these weeks, it cracked and splintered under the weight of the task. Witnessing the torture of seeing him go through this hurt me more than anything else I'd ever experienced.
The second week of treatment arrived, and my dad, Dexter's one-man-band of enthusiasm visited, staying with us for three days. Staying with us gave us both purpose, I cooked and chatted to dad while he helped Dexter trying to nudge his eating and play his games with him, all while working from the apartment every afternoon. It was nice having the company.
That first afternoon, Dexter's blood had shown to be struggling. We had to go over to manchester hospital for a blood and platelet transfusion; we had to go in and have all his bloods taken, to then return home and back after treatment the following day for a long 5-hour stay, frustrating and hard for poor Dexter after an early morning of radiation. The whole thing was a bit tough. Lets not even talk about the early morning, cognitive learning tests on an empty stomach they made him do. He was grumpy, and I don't blame him, the woman had no bedside manner, was terrible with kids and was basically a box ticker.
He told me how the shoppers back home in the south were bulk buying and clearing the shelves because of a looming pandemic. I wasn't worried, the shops were fully stocked here, and it didn't seem to be impacting the north at all, at the time I thought my mums panicked phone calls, and my dad's updates were over the top, but clearly, from that point, things got so much worst. It was so lucky dad had come that week because he was meant to return later in the month. Still, due to the lockdown, he was never able to return, I was beginning to think Jack wouldn't be allowed to travel up here, we were meant to swap so I could go home and have a c- section and he would continue with Dexter's treatment.
Not how we imagined our seventh baby would be welcomed into the world, without Jack by my side, but it's what was needed, and we all had to do whatever we could for Dex.
The treatment continued most days he did so well; I would wait in the playroom, I would hate the days he would wake crying. I would run through to the ward, to ensure he knew he wasn't alone and I was always nearby waiting for him. I hated he had to do any of it alone but those days were so hard. every day I was surprised by how well he was doing, and every day I was so grateful for the hours of lego, cartoon watching and cuddles we were having together.
I missed our family, but I knew every day I was needed by Dexter, I was helping him continue. Every day we would talk about his new sibling and how he was so excited to hold the baby, the baby was a true blessing, the goal he needed to continue to get through, it filled me with the hope that our new baby and Dexter were meant to meet one another, that this baby had been the focus we all needed to get through this, towards happier times.
Soon enough, the 18th arrived, and Jack was with us. Mum and Dad were at home manning the fort while Jack and I had one night to see one another before we parted again. Dexter was so excited to see him; they had to build lego and watch cartoons immediately, I had to pack. Already I was old news, Dexter wanted Jack to sleep in his room, and I was in the spare room surrounded by all of the bags I was returning home with. I instantly felt lost without him, how was I going to cope the next ten day or so at home, knowing he was here enduring what he was, without me. I was not too fond of the idea of leaving them both.
Steve picked me up early the next morning. I waved Jack and Dex off as I headed home. They headed for another dose of radiation and that same week, Dexter flagged a line infection and ended up staying in manchester children's hospital for a week, mid lockdown with no open restaurants as covid started to shut the world down, suddenly the treatment felt more than gruelling, it was a mission.
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