One thing I really didn’t want Dexter to go through was having a feeding tube (gastrostomy tube) inserted into his stomach. It was required for the last 3 weeks of his radiation therapy because his mouth would be too sore to eat anything. A few days after the operation to implant the tube we had a cinema party for Dexter with his school friends. He could barely walk while all his friends were running around and, like with everything about this journey, he handled it with a brave face. Every day Rach or I would have to turn the tube 360 degrees to make sure his stomach doesn’t graft to the tube and flush it with sterile water. You could see what Dexter had eaten that day in the tube, and flushing it would pump some fresh water into his stomach, causing a strange feeling in his belly. Once a week we would have to push the tube into his tummy about 1cm, turn it around, and pull it out again, all part of maintaining it from grafting to his stomach.
2 weeks after the operation Rach and Dexter headed up to Manchester to start the gruelling 7 week proton therapy process - the whole reason for this tube. For the first 2 weeks Rach was with dexter and the feeding tube wasn’t needed, but everyday it needed flushing and turning. I joined Rach after 2 weeks and we got to stay together for one night before Rach had to head back home getting ready to give birth to our little Quill. Like ships in the night, we passed, hugging each other before departing, both venturing into the unknown in the hope that we would be reunited with a new born baby and a healthy dexter as a global pandemic began to take it’s grip on the world.
As dexter and I waved goodbye to Rach, we headed onto the morning shuttle bus ready for my first day of 5 weeks taking Dexter in for his ‘magic sleep’ proton radiation sessions. On my first weekend with dexter he slept all day and all night both saturday and sunday. I assumed this was all part of the tiring experience of the treatment, but when we headed to the proton centre his temperature was high and the nurses worried he had an infection, so requested that we headed to manchester children’s hospital A&E. We arrived as the pandemic was rising in the UK and hospitals were hotbeds for covid. The hospital was extremely quiet, a kind nurse was waiting for us and a doctor examined Dexter to determine if we needed to go to the Covid ward or not. He proceeded to explain that a lot of kids with cancer had ended up stuck in the there for 7 days because they get a temperature from infection and that thankfully the hospital had now decided to admit cancer patients to the cancer ward if they had no other symptoms than a temperature. There were no covid tests available at that point, but the doctor examined me and dex and decided that we were clear. Dex and I headed up to the ward and got shown to our beds in a shared room, while the doctors discussed antibiotics and his blood samples were sent off for testing. We set up camp in the ward and every morning for 7 days would shuttle from the hospital to the proton centre.
Each day more restrictions came in. The hospital cafe closed. Only one carer could enter with a patient. Your temperature was checked at the door. The streets became eerily quiet. Security on the door would ask the purpose for your visit. The radio would announce the amount of covid cases rising across the UK whilst we sat on the bus, dexter holding his little sick bowl.
In the hospital I was trained on how to use the feeding tube to feed Dex as his face became more sore and he didn’t want to eat because of the nausea. They gave me a feed pump and large bottles of chocolate milk flavoured nutrient mix to feed him. We started with a small amount of feed being pumped into him while he slept to see if he would tolerate it, and then increased it over the next few days. He handled it well in between magic sleeps, chemotherapy, tests and rest. Once I was trained up and his infection had cleared up we were allowed to head back to the comforts of our little flat in central manchester.
When we left our flat 3 doors down from Piccadilly train station the streets were bustling, roads were packed and trains departing and arriving. When we returned all of that had stopped. The roads were silent and only a single canada goose walked passed us as we approached the station “I’ve never seen that before” the driver declared. We entered the hotel lobby with no furniture and the restaurant reduced to a take away service and I got dexter back to our flat. I then ventured out to the local shop we used, it was closed. The nearest supermarket was also boarded up. The trains had stopped running. It was dystopian. I eventually found a shop inside the station that I could buy supplies for us back in the flat. Although, by this time I was pretty much cooking for myself, Dexter was hurting too much to eat solid foods.
We sat in our little flat that looked out over manchester in the middle of a pandemic whilst my wife was going to give birth within a few days as I held my little boy close to me in the hope I could get him back home to meet his new little brother. In the mornings just after dexter went in for his magic sleep I would join the Lush Leadership zoom calls at 10am to ensure our website was up and running whilst all of our shops were closed. When he came out of treatment the nurse would come get me - I would continue the call on my ipad with my headphones in as I attached the pump to his feeding tube to get some nutrients into his system. He would sleep for an hour while the pump fed him and I discussed business with my colleagues at his bedside. When he woke up, I would leave the call and they would send us on our way. We had nowhere to go except back to the flat. Everything was closed.
Meanwhile Rach was preparing to have a C-section in Poole Maternity with her mother as her birthing partner. Restrictions had come in and her mum was only allowed to be with her for the birth, then had to leave. I was pacing back and forth in the proton centre whilst Dexter was in his magic sleep waiting to hear from my mother-in-law that my wife and baby were safe. The phone call came through that both of them were safe and well and I let out a huge sigh of relief as the nurses and staff congratulated us. When dexter woke up I explained that he had a little brother and showed him photos. He fell in love instantly and it gave him a real focus and some energy to get through the last 3 weeks of treatment.
His energy was really suffering by the time we headed back to the hospital for another dose of Chemo after 5 weerks of proton radiation. He could barely talk or walk, he was in so much pain. I would use the feeding pump, and sometimes it would make him throw up. Every morning I would mix his morphine powder with sterile water and pump it into his feeding tube, carry him down to the shuttle bus, hold his sick bowl and escort him in for his magic sleep before logging into the Lush zoom call.
He became skin and bone. When I bathed him I couldn’t bare looking at his naked body with these tubes coming out. We would play video games together for a short while when he had energy, before I read him peter pan while he fell asleep in my arms. Waking up the next day, rinse and repeat - make the morphine, get him dressed, carry him down to the shuttle and listen to the state of the world as the pandemic spread. Get our temperature checked at the door, wash our hands and get on with the proton treatment. 10 more magic sleeps, then we can go home dex.
Easter weekend was tough. Dexter attempted an egg and spoon race with the nurse as he wobbled around the proton centre play room. A bank holiday with no family whilst dexter had his chemotherapy. I kept up the morphine and the feeds to help him get through it all.
7 more magic sleeps.
3 more magic sleeps.
No more magic sleeps. He reluctantly rung the bell in the proton centre to declare the end of his treatment. I had packed our bags 3 days before we left. We got into the taxi ready for the long drive home and the roads were silent the whole way. We stopped at a service station where birds and squirrels had appeared like some disney movie, hanging around where no humans were. We approached home and a friend had arranged for a socially distanced greeting of friends and family lining the sides of our road as I explained to dexter that they were all here for him. He was in no fit state to understand - it was an extremely emotional moment. We headed into the house to meet Quill and be a family again. It was such a reward to see my little boy holding his baby brother in his arms.
Home. Finally.
His feeding tube supplies arrived a few days later, and I continued to use the feeding pump for a couple of weeks after the treatment while his mouth was still too sore. Eventually he could eat again and the liquid food became redundant. I couldn’t be happier. But it wasn’t over. 2 months later we got the results from his scan and it was decided that he would need maintenance chemo. This would come in the form of an oral dose that I would have to administer every day, through his feeding tube. So for 6 months I would poison my son with chemotherapy through this tube, turn it 360 degrees and flush it. Everyday.
Then we finished maintenance chemotherapy, so surely we could remove the feeding tube? Yes - let’s get it booked in as soon as possible. However we decided to wait after discussing things with our consultant. Dexter had a lot of worrying symptoms that seemed like the cancer was returning, so we didn’t want to remove his lines and tubes if they may be needed. Let's wait 3 more months for another scan. So we did. And it was safe enough to operate 3 months later. FInally this tube and the lines protruding from our now 6 year old boy’s tummy would be removed.
His operation went smoothly. Everything seemed fine, however as the week went on it became apparent that the wound from the feeding tube wasn’t healing properly, Dexter had been desperate to get into the swimming pool with his grandad and splash about, but not yet. A few weeks of back and forth with the hospital and no luck with this wound. Eventually Rach got an appointment with the surgeon who had done the operation 6 weeks after and he explained that chlorine is a great way to heal it, just get in the pool! So they drove straight back and he got in the pool. Sure enough over the next few weeks with regular swims his wound healed. Now there is a large purple scar on his belly. A permanent reminder of the stress and strain he endured to safe his life.
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