Dexter turned five on August 18th 2019, and coming up to Christmas he was tired and grumpy, which we had thought was because being the youngest in year one was taking its toll. Unbeknown to us cancer was rapidly eating through the inside of our baby’s face. On Saturday the 30th of November 2019 he had what looked like a weepy eye, I went and got eye drops and as he tilted his little head back across my knee, we saw this red fleshy bulge protruding from the top of his left nostril. We googled it and thought it may be a nasal polyp? Sunday evening, we were all in our Christmas pj’s to celebrate the 1st day of the Christmas season when Dexter’s nose suddenly exploded. He’d never had a nose bleed before and suddenly he was covered in blood – the suspected polyp had grown. Monday morning first thing we’re in the GP’s office, listening to him argue with some junior doctor, our GP wanted Dexter to be seen that day and the doctor said it’s probably a piece of Lego shoved up there and we’d have to wait to be seen by an ENT doctor on the Thursday. We left with the parting advice that if Dexter was to have another nose bleed to take him straight to A&E. The next evening, I was in A&E for four hours with Dexter curled up on my lap sleeping while we waited for him to be seen. A doctor attempted to seal the tumour with silver nitrate unsuccessfully, and it bled through it spreading black across his face, his nostril was growing swollen and bulbus under the expanding tumour. We were sent home and told to come back in the morning at 8am because there was only one bed left in Peds and that had to be kept for a ‘seriously ill’ child.
Dexter was admitted the next morning, the doctors appeared disinterested and kept insisting the large mass was a reaction to Dex shoving Lego up his nose, despite him telling them he wouldn’t do that. He was given a CT and MRI scan around 3pm, we were then put into a private room and for nine hours, no nurse or doctor would communicate with us, everyone we asked said ‘a doctor will come and see you.’ At 12.30am in the dark hours in the morning a doctor finally came to see us, Dex was drifting in and out of consciousness and he explained they had discovered a very large cancerous tumour and had been conversing with Southampton because it hadn’t been seen in Poole. He was to be blue lighted to Piam Brown ward at 8am and we should expect our lives to be turned upside down and we should bring his siblings down to say goodbye because there was no guarantees Dexter would see them again. I was heavily pregnant and in a state of shock.
Arriving in Southampton, we settled into the ward and that evening they performed an emergency biopsy and put lines in to allow emergency chemotherapy to start the next day. Dexter was upset by every medic and those first 14 days of waiting to find out what kind of cancer it was, while friends and family sent gifts and support, were filled with such sorrow. I had no idea if we would be spending Christmas in hospital or if it would be our last Christmas.
On the 14th of December they believed it was rhabdomyosarcoma and that it looked this way because of how aggressive it was. They released Dex on the 17th so he could come home, but by the 18th we were back in hospital because he was neutropenic. The morning of the 19th, Dex sat up early morning and to my horror all of his hair stayed behind on the pillow, I cried, his identity had been so tied to his thick blonde hair, I had no idea the effect it would have.
We had to stay in and have transfusions, hospital life was new to us and the doctors played down how grave a situation we were in – who wants to deliver bad news at Christmas? We were back in Southampton for round two of chemotherapy on the 27th of December and it was then, that our consultant talked to us honestly, there was no sugar coating how bad a situation Dexter was in. His tumour was aggressive and large, it had eaten through and around intricate parts of his face, to the bottom of his brain plate and to the top of his palate. He was high risk; it was inoperable, and she felt that they were still treating to cure, but it was a challenge without surgery. Looking back, it was an impossibility.
Jack and I were besides ourselves. Jack really believed that microsurgery, to get any of the tumour out, debulk it was better than not too. He believed that even without clear margins, the chemotherapy, and the Proton Radiation therapy, which was our only option would be more effective if some of the cancer was removed. We were told no at every turn, every ENT doctor refused to touch it. Radiation was the only option.
Dexter was one of six, I was heavily pregnant, the only Proton centre in the UK in Manchester was open to accept Dexter for Proton radiation Therapy and it was vital he had a place, or we’d be sent to Germany. Luckily, they found a place for him, and requested that he had a feeding tube because the Radiation treatment would burn his mouth so much he wouldn’t tolerate eating. With the painful tube protruding from his stomach, he had three days of chemotherapy in Southampton before we drove up to Manchester for radiation to start on March 5th, 2020. Two weeks later the whole country went into lockdown due to Covid 19. Again, we had fortune on our side and Dexter’s treatment continued, despite everything changing around us and the hospital fighting to stay open. On the 18th of March, Jack and I switched, and I came home to have a c-section at the end of the month. Dexter endured 33 magic sleeps, an infection, 2 blood and platelet transfusion, 7 days stay at Manchester’s Children’s hospital during a pandemic, and a long drive home.
Radiation was promised to be a miracle cure, that it would melt the tumour away, maybe making surgery possible. But when the baseline scan arrived in June, they told us it hadn’t worked, the tumour looked barely damaged, had shrunk very little in size and we were out of options. The only thing left was to get a PET scan in London to see exactly what it was up to.
The PET Scan confirmed it was docile, meaning no cancerous activity and we were elated. We believed it was dead, after seeing the brutality of the treatment and we rejoiced.
Now we had to go through six months of maintenance chemotherapy, pumped in through his feeding tube every day and manage the side effects of the barbaric treatment. After a year we could remove the tube and lines from his battered body. When faced with horrific cancer, unthinkable treatments, and surgeries, its strange how as parents we’re conditioned to believe that anything is better, even though his body was painfully thin and battered, threaded with lines and feeding tubes, scarred with sores and previous subjections. His limbs were floppy from vincristine and his eyes burned at any show of light from radiation, he had daily mucus in his nose and throat, he couldn’t breathe out of his nose and his nostril had collapsed, his teeth hurt, his bones in his face ached, he lacked energy, Dexter couldn’t manage full days at school and was fatigued and suffered horrendous night terrors. The pleasure of food was lost, some foods he couldn’t face, he was deaf in on ear and had fluid behind the other and his concentration was effected, this was his everyday life after cancer and the treatment on offer and we thought of him as well for the 15 months we managed all of the symptoms, because it was better than the rhabdomyosarcoma and we were grateful to have him.
Then in January 2022, I took him to an ENT specialist at Poole, he had sent him for hearing aids and recommended grommets and stints in his nostril, because his scans had been stable for over a year he scheduled surgery. I hadn’t heard from Dexter’s consultant, so I emailed to make sure she was aware, which she wasn’t, and so cancelled the surgery, saying we’d wait till the scan in March before deciding to operate. She ran extra CT scans and formations in the MRI machine to make sure all was well, however, the extra scans showed that the cancer had returned and was growing further back towards Dexter’s brain. I thought we still had options, we planned a biopsy but Dexter contracted Covid and they delayed everything by two weeks. The biopsy found no cancer because the ENT doctor didn’t know where he was looking. 2 weeks later another surgery was planned to put a new line in followed by another larger biopsy in which Dexter then had a neurosurgeon use microsurgery to non-invasively go through his nose. Cutting through the back of his nose he debulked the original tumour, however, the new part of the tumour had grown round the arteries leading to his brain and he didn’t risk touching it. Dexter recovered extremely well with no adverse side effects, but Jack and I were outraged that no surgeon would perform this operation during front line treatment, and would in relapse. When there was no hope of saving his life, they were happy to take risks, now that the tumour was too large to be stopped.
Dexter started chemotherapy, lacking one component so he could go on a trial. Dexter probably had a year left with us and there was no hope of his survival, it was crushing to accept. We went for the scans required where the results came back confirming the rhabdomyosarcoma was growing rapidly despite the chemotherapy. We were told that any other drugs would likely be ineffective and hurt Dexter more than the cancer, so Jack and I made the devastating decision to stop treatment and make Dexter’s life the best we could for as long as we could.
Palliative care started; we made the decision to have Dexter at home with us as a family. He was given 4-6 weeks, but he continued for 16 weeks, every day getting up, picking up his little rucksack containing his medication, and dragging himself downstairs every day to be with us all, being together made us happy. He was courageous, determined and he never complained.
Dexter got up and fought every day until the very last day when he died with Jack and I by his side on the 27th of July 2022, at 17:45pm – undoubtably the bravest and most deeply heart-breaking thing we have been unfortunate enough to witness.