Deen's Story

Shortly after Deen's 9th birthday, he was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) brain tumour on Monday, September 27, 2021, after suffering from dizziness and vomiting for two weeks.

On Saturday, September 25, he was misdiagnosed at Hillingdon Hospital with an infection, even though he was presenting with neurological symptoms such as a head tilt and a flickering eye. He was prescribed antibiotics and sent home.

After a weekend of worsening symptoms, Deen was taken to Northwick Park Hospital in Harrow. He was given an MRI scan, and it was there that the true and devastating diagnosis was made. Deen's journey began with confusion, fear, and a transfer to Great Ormond Street Hospital (GOSH).

Deen was transferred to Great Ormond Street Hospital that same night. My wife and I had no idea how bad things were. I kept wondering why surgery wasn’t an option. I had no idea that operating would kill him, as the tumour was in the brain stem.

A biopsy confirmed the diagnosis, revealing the H3 K27M mutation. One evening, a junior doctor told me that there was no cure—just limited treatment. I felt faint, as if the world had shifted under my feet. The next day, consultants explained that this was a fight we couldn’t win. I was haunted by memories of Deen’s older sister, Jenna, who had also been hospitalized for vomiting when she was 8, and I feared the worst for her too.

Deen's condition worsened following the biopsy. He was unable to walk, and his neck tilted even more. He was given dexamethasone to reduce the swelling in his brain.

Deen was sent to UCLH (University College London Hospital) for radiotherapy. His symptoms were so bad that they immediately doubled his dexamethasone dose. He was made a face mask to keep him still during the treatment. He painted it with the England flag after watching the Euro 2020 final.

By the time his treatment started, he had put on so much weight because of the steroids that the mask no longer fit. Then, for six weeks, Monday to Friday, he endured radiotherapy, along with high doses of dexamethasone steroid. He was initially an inpatient but was allowed to go home as an outpatient after a couple of weeks.

During his time at UCLH, he would watch videos of people speedrunning The Legend of Zelda: Breath of the Wild.

By December 2021, Deen had completed his treatments, and we could only hope. He was able to walk a lot better. His neck tilt had improved, and he could kick a football around. The movement in his right leg was almost as good as before he was ill.

After completing radiotherapy, Deen experienced what felt like the best six weeks of his life since falling ill. Despite being constantly sick, his bravery never faltered. He continued to gain weight due to the steroids, increasing from 20kg to 30kg. He believed the treatment would work, and we couldn’t tell him otherwise. Hope carried him through.

Deen was so happy to ring the bell at the end of his weeks of radiotherapy. He was proud of himself. His neck tilt had gone, and he could walk again. He was able to kick a football around and even went back to school for a few days until the Christmas holidays.

In January 2022, Deen had another MRI, which revealed that the tumor had already returned. Chemotherapy followed, but it only made him sicker. Over the months that followed, Deen deteriorated, losing the ability to do anything without suffering. His strength and resilience were incredible, but he was getting worse each day.

Because his mobility was not great, he turned to his Nintendo Switch for comfort, playing games like The Legend of Zelda, Mario Odyssey, Super Smash Bros,  and Minecraft.

Deen became less and less mobile every day. He felt so sick and would vomit daily. He was put onto crizotinib as an experimental treatment, but he was so sick by this stage that he could not take the medication without vomiting.

From April to July 2022, Deen’s condition worsened rapidly. His headaches became unbearable, and even morphine couldn’t relieve the pain. He lost his hearing and vision, and communication became impossible. The suffering was beyond anything we could have imagined. In June, he was moved back to GOSH, and eventually, his body gave out. His last words were, “Jenna, I love you.”

The suffering that Deen endured was unbelievable. It's not like in movies where pain relief always works. No matter how much morphine and later methadone he was given, he continued to scream in pain. Even when Deen lost the ability to speak, move, see, and hear, if he was moved in his bed, he would moan in pain. He existed in this vegetative state for the final six weeks of his life, which, although awful, was far better than the pain he endured in the six weeks prior.

What really shocked us was that not only are there no effective treatments for these types of brain tumours, but there is also no way to treat the pain. This is hidden from most people. He passed away on July 29, 2022.