Haisam Raja, a kind and creative nine-year-old from Nottingham, was diagnosed with a brain tumour just a month after his sixth birthday. He had experienced occasional headaches for several months before developing nausea and vomiting in spring 2023. An urgent eye examination revealed significant swelling around his optic nerves, leading to scans which showed a brain tumour the size of a ping-pong ball. Haisam underwent surgery to relieve pressure on his brain before a second, major operation successfully removed the whole tumour. Analysis showed malignant cells, requiring chemotherapy and Proton Beam Therapy. Now aged nine, Haisam is running in the Robin Hood Mini Marathon with eight of his school friends to raise money for Brain Tumour Research.
Here is Haisam’s story, as told by his mum, Misba…
Haisam has always been calm, kind and incredibly empathetic, qualities which have remained a huge part of who he is throughout everything he has faced. He is a loving big brother to his two younger siblings, Hoorain, 8, and Mikael, 6, and attends Beeston Fields Flying High Academy, where many of his friends have known him since Reception. His teacher, Miss O’Donnell, taught him in Year 1 when he was diagnosed and now teaches him again in Year 4. She says he is still the same clever, funny, hardworking and kind boy she remembers, only now more independent and mature.
At the beginning of 2023, Haisam started experiencing occasional headaches, but I thought they could be caused by dehydration, lack of sleep or tiredness from his busy routine with school and mosque. During the Easter holidays in 2023, things changed. He came home early from a sleepover at my mum’s because of a headache and, a few days later, started experiencing nausea and vomiting too.
One evening, Haisam cried because he was in so much pain, so I took him to the GP the following morning.
The GP said it was a viral infection and advised to continue giving him paracetamol. I felt disappointed that his symptoms hadn’t been taken more seriously.
On 17th April, I dropped Haisam off at school feeling well, but before I had even left, the school called to say he was vomiting and had a really bad headache. The GP had no appointments and advised us to go to A&E. My husband, Qaisar, was away for work, so I called my mum for advice and she suggested getting Haisam’s eyes checked first because she thought children get bad headaches if their eyesight is weak. Luckily, I found an optician at Vision Express who could see him right away.
Within minutes of examining him, the optometrist stopped and took images of the back of Haisam’s eyes. They showed significant swelling around his optic nerves, and we were urgently sent to the eye clinic at Queen’s Medical Centre. Haisam underwent numerous checks before having a CT scan and MRI.
We were eventually allowed home, but about an hour later a paediatric doctor called and asked us to return to hospital with Qaisar too. My face felt like it was burning and my heart was beating out of my chest. I kept telling myself: “It’s nothing, it’s nothing.”
As the clock struck midnight, we were given the heart-wrenching news that Haisam had a brain tumour the size of a ping-pong ball.
The tumour was blocking fluid in Haisam’s brain from draining, which was causing his headaches. Doctors told us he would need surgery the following morning to relieve the pressure and insert an external ventricular drain. They also hoped to take a biopsy to establish what kind of tumour it was.
In that moment, I felt what real helplessness was. If I could have traded places with my baby, I would have. Inside I was screaming but outwardly nothing would come out. Qaisar just stood there unable to move. It was the first time in eight years of marriage that I had seen my husband cry.
I called my mum and, as soon as I heard her voice, something broke in me. “My baby boy is not okay,” I kept saying. That night felt endless. Your mind goes to the worst-case scenario but, somewhere amongst all that fear, there is still an optimism which keeps you going.
The next morning, Haisam underwent his first operation, but doctors were unable to take a biopsy of the tumour. The surgeons were cautious about causing unnecessary damage because of its position and decided they would instead attempt to remove the tumour during a second operation. It was disappointing because we still didn’t know exactly what we were dealing with.
Haisam recovered from his first surgery and his main operation was scheduled in May 2023. In the days beforehand, Qaisar and I tried to remain calm around the children, but watching Haisam play and laugh filled me with sorrow. We were surrounded by family, loved ones and even messages from people we didn’t know telling us they were praying for him.
Before surgery, doctors explained the risks. Because of the tumour’s position deep within his brain, we were told Haisam could lose his ability to walk, talk or see. My hands shook as I signed the consent form and I prayed to Allah to protect my child.
On 9th May 2023, Haisam was taken for major brain surgery.
Before he was taken to theatre, the three of us even managed a few laughs. I stayed with him until he was given his anaesthetic, kissed him and said: “Don’t worry, Mummy loves you and Allah will protect you always.” He smiled weakly, told me he loved me too and fell asleep.
The surgery lasted around 10 hours. As time passed, I became increasingly anxious and kept asking the nurses if there were any updates. Eventually, I sat beside Haisam’s empty bed and silently cried, praying for somebody to tell me my baby was okay.
At around 8pm, a nurse came towards me beaming and said Haisam was out of surgery. As I approached the recovery room, I heard him chatting and laughing before I even saw him. Then I turned the corner and there he was, sitting up with a glass of cold water in his hand. “Hi Mummy, I’m okay,” he beamed.
The surgeons told us that, despite the tumour being in a complicated area, they had managed to remove the whole thing in a single attempt which the surgeon described as being like a miracle. The following morning, doctors told us the tumour appeared to be a teratoma containing different types of tissue, including teeth and hair. It was sent to a laboratory in London for full analysis and we were reassured Haisam was unlikely to need anything further.
We came home a couple of weeks later and Hoorain and Mikael hardly left their brother’s side. Haisam showed incredible resilience throughout everything. Whenever I asked if he was okay, his answer was always: “I’m good, Mummy.”
It was only more recently that he admitted how scared he had been. He didn’t understand what a tumour or surgery meant and had simply gone along with what the adults were telling him. When I asked why he hadn’t told me, he said: “You were already so sad, I didn’t want to make you more sad.” That is the kind of child Haisam is. I have learnt from him how to be resilient.
In mid-June, we received a call asking Qaisar and me to come back to hospital. We immediately knew something wasn’t right.
Further analysis showed Haisam’s tumour was a germinoma, a type of germ cell tumour thought to develop from cells that would normally go on to form sperm or eggs. Although most of it was low-grade, we were told markers showed two areas containing around 1–2% malignant cells. The good news was that the whole tumour had been removed.
The news still completely knocked us. I had spent weeks convincing myself Haisam wouldn’t need anything further. I was an emotional wreck. After everything he had already been through, suddenly we were facing another stage of a journey none of us had expected.
Haisam had a Hickman line fitted and began chemotherapy on 23rd June 2023. He was due to have four sessions, finishing at the end of August, followed by three weeks of proton beam therapy in University College Hospital in London.
Chemotherapy was incredibly difficult for him. He experienced nausea, vomiting, headaches, body pains, tiredness and loss of appetite, and needed blood transfusions a couple of times because his red blood platelets were low. By the end of his second session, his hair had also started falling out. At first, he excitedly pulled out clumps to show Hoorain and Mikael that he was going bald, but a few days later he asked his dad to shave the rest off because he “didn’t like the look”.
One day during chemotherapy, Haisam was silently crying while watching a film. He looked at me and asked: “What Dua can I read so Allah can make the chemo stop?”
I cannot put into words what that question did to my heart. It was the first time I openly cried in front of Haisam since his diagnosis. I hugged him and we both cried for a long time that morning. It is incredibly hard watching your child go through so much when you know they have to endure it.
Because Haisam was at high risk of infection, we had to limit where we went and who could visit him. Thankfully, we managed to avoid an infection. Even while going through chemotherapy, he would ask whether he could go to school whenever he felt well enough. Beeston Fields Flying High Academy was extremely supportive and worked around his needs and comfort, which I will always be thankful for.
As chemotherapy continued, Haisam became increasingly anxious before each session and needed lots of encouragement and reassurance. Yet, at just six years old, he showed incredible patience, resilience and understanding.
No matter how ill he was feeling, Haisam would give the doctors and nurses a thumbs-up and say: “I’m good.”
In September, we travelled to London for Haisam’s proton beam therapy. He had already visited the hospital and was excited about having a special helmet which he could personalise. Compared with chemotherapy, the experience was much less intense and Haisam wasn’t unwell. He underwent an hour of radiotherapy every day for three weeks.
On 13th October 2023, Haisam’s treatment finally came to an end and we made our way home to our family. The following week, we had a big family wedding to attend in London, which gave us something completely different to look forward to after everything we had been through.
As everything began to slow down, Haisam started struggling emotionally. For weeks, he would suddenly cry without knowing why, sometimes after we had spent a whole day out together. One evening, he became so upset that it scared me, so I contacted his wellbeing nurse. We were told that, after months of constantly dealing with so much, it was understandable that the emotions were beginning to surface once everything had slowed down.
It was difficult because I felt helpless again. We discussed taking a break several times during Haisam’s consultant appointments and, in October 2024, we went to Pakistan as a family for five or six weeks. The change of surroundings did wonders for him. His episodes gradually came to an end and he returned home much happier and more content.
Today, Haisam is doing really well and has grown into a wonderful young boy who is immensely loved by everyone around him. He continues to have regular MRI scans and consultant appointments, but he is thriving both at school and outside it. He is still the caring and respectful Haisam he has always been, and seeing the young boy he has become after everything he has faced makes me incredibly proud.
Now, three years after his diagnosis, Haisam is taking on the Robin Hood Mini Marathon with eight of his school friends to raise money for Brain Tumour Research.
He says: “I wanted to do the Mini Marathon to help raise money for Brain Tumour Research, so doctors can find better treatments and help other children like me. I think it’s really kind of my friends to join me and shows that they care about me and want to help make a difference to other children who have been through what I have. I have the best friends ever.”
As his mum, seeing them do this together makes me incredibly proud. They are still so young, yet they understand what this cause means. Knowing the money they raise could help fund research into low-grade brain tumours at the Brain Tumour Research Centre of Excellence at the University of Plymouth makes it even more special.
I would tell other parents to trust their instincts and pay attention to changes which don’t feel normal for their child. If something doesn’t feel right, speak to your GP and keep asking questions if you feel you aren’t being heard.
There is no way to sugar-coat going through a brain tumour diagnosis with your child. It is frightening and heartbreaking, and there were times when I felt helpless and lost. Haisam’s resilience and bravery helped me keep going, while praying gave me something to hold on to through the chaos.
I would also tell families to keep the people who love them close. My parents and siblings became my backbone, supporting me emotionally and taking on responsibilities when I couldn’t.
I wish no child ever had to go through this but, for those who do, I hope they come through it with a healthy, happy and thriving life ahead of them.
Misba Qayyum
September 2026
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been touched by Haisam’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
