In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Rayhan Majid from Airdrie near Glasgow was a fun-loving four-year-old who loved sports and Transformers. When he got headaches and started being sick, his parents Nadia and Sarfraz took him to four different GPs in six weeks, but they all dismissed their concerns. Convinced that something was wrong, Rayhan’s parents took him to hospital where an MRI scan revealed he had a high-grade medulloblastoma brain tumour. Despite undergoing four different surgeries and six weeks of radiotherapy, Rayhan sadly died during his first course of chemotherapy on 7 April 2018 with his adoring parents by his side.
Rayhan’s mum Nadia tells his story…
Rayhan was born on 2 June 2013 in the middle of a heatwave and when he was born, everyone said he had brought the sunshine with him. That analogy was so fitting; he was a cheery, fun-loving boy, and he was always laughing.
Rayhan was a healthy and active boy who played football and did Taekwondo and swimming. He was never sick but, in October 2017, when he was four years old, he woke up crying one evening. When I went to him, he wasn't quite aware of himself. He was clutching his head and saying that it was hot, but I couldn't make eye contact or get through to him.
“He started to wake up in the night with a headache quite a few times, and he would be sick in the morning. It wasn’t like normal sickness. He would be retching and all that came out was bile. That’s when my alarm bells started ringing.”
We just knew something wasn't right, so we took him to the doctors, but they were not very helpful. They would tickle and play with him, and he would laugh and giggle. Rayhan would pass the neurological tests with flying colours, and the doctors said he was absolutely fine. But Rayhan kept getting sick and his headaches were also increasing. Over the course of six weeks, we took him to see four different GPs on six separate occasions.
When Rayhan watched TV, he kept saying he couldn’t hear it and he turned it up really loud. We also noticed when he was walking through doorways in the house, he wasn't negotiating the door frames very well and he would wobble into them.
We were convinced something was wrong with him but didn’t want to keep going back to the GPs who were dismissing us. Eventually, we decided to take him to the Accident and Emergency department at the Queen Elizabeth University Hospital in Glasgow. My husband, Sarfraz took him to the hospital while I stayed at home with our four-month-old baby, Eliza, and older son, Zakaria.
“We were so desperate and worried they would not take us seriously that Sarfraz exaggerated his symptoms. Thankfully the medical staff there agreed that it was not normal for a four-year-old to be having headaches for this period of time.”
They checked his eyes and picked up some nystagmus, which is where the eyes are looking in different directions so they kept him in overnight so he could have an MRI scan the next morning.
On Wednesday 13 December Rayhan had his MRI scan. Later, we were told they had found a 3 by 4-centimetre mass in the cerebellum. They didn’t know whether it was low or high-grade and said Rayhan would have to undergo surgery to have it removed.
“We were in complete shock, but I had to be strong for our child. Sarfraz and I were going outside and just breaking down and crying, and then we were in the room, singing songs, playing games, and laughing, and trying to keep the atmosphere upbeat. There was a complete clash of emotions.”
It was Christmas time, so the hospital was covered in decorations. They had Santa's grotto downstairs and there were lots of Christmas activities going on. I would drive home, and the Christmas songs were playing on the radio and I'm thinking ‘how is Christmas still going on?’
On Friday 15 December Rayhan was in theatre for a 10-hour operation. The surgeon told us that the surgery was successful. They managed to get most, but not all, of the tumour because it was touching the brainstem.
When we went to see Rayhan in intensive care (ICU) we were so shocked to see him so unwell with so many machines and tubes attached. As a result of the growing brain tumour, he had also developed hydrocephalus, a build-up of fluid around the brain, and he had to have a drain inserted into the front of his head to drain the fluid. He also had a huge scar at the back of his head from where the brain tumour was removed. To see our four-year-old baby boy like this was so hard but we had hope that this was the first step in making him better.
Afterwards, the surgeon said there was still a little bit of tumour left, but they would get it with treatment later on. The external drain was supposed to encourage the fluid to start draining itself after four days, but it wasn’t happening, so a few days before Christmas he had to go through major surgery again to have a shunt fitted.
After the operation Rayhan developed cerebellar mutism and couldn't speak or walk. He went from being this vibrant boy who was full of energy and laughter to being silent and unable to move. From his expressions we could see that he was in pain, but he couldn't tell us what was wrong. His older brother, Zakaria, then nine-years-old, was shocked and upset and saddened to see his best buddy, playmate, and confidante this way.
A few days after surgery, they told us that the tumour was a grade 3 medulloblastoma.
Rayhan needed six weeks of radiotherapy and four months of chemotherapy, but it was dependent on how well he recovered from the cerebellar mutism. We threw ourselves wholeheartedly into the rehab, constantly trying to stimulate him to get him ready for the radiotherapy, which was due to start on 17 January.
Rayhan needed to have a pre-radiotherapy MRI scan. Heartbreakingly, it showed the original tumour had grown back, along with the growth of two new tumours in his brain. He had also developed leptomeningeal disease, which is like a sugar-coating of cancer throughout his brain and spine.
In the few weeks prior to the scan, Rayhan’s original symptoms had re-appeared and, despite us repeatedly asking if the tumour could have returned, they had assured us this was not possible in such a short space of time.
When the results of the MRI came in, the doctors were shocked to see the tumour had returned, but we were shocked that so many medical professionals were not able to see this.
Rayhan started radiotherapy at the Beatson West of Scotland Cancer Centre on 17 January 2018. At first, he was really sick, but over the course of the treatment we started seeing some improvement in his symptoms which gave us some encouragement.
In mid-February, the medical team said we could take Rayhan home to spend time with his family before the chemotherapy began four weeks later. He was so happy to be home, to feel the carpet under his feet, and to be in his own bed. He had all his toys, people could come and visit him, and he could have home-cooked food. He was marveling at his baby sister, Eliza, and how much she had grown, and he just loved to spend time with her and his older brother, Zakaria. It really gave him a morale boost.
Then we had another devastating setback, a pre-chemotherapy MRI scan showed there had been very little change from the previous scan. The doctor couldn’t say whether the radiotherapy had been ineffective, or whether everything had just grown back during the four-week break between radiotherapy and chemotherapy. Despite these developments, the medical team decided to go ahead with the original treatment decided at the outset when he was diagnosed, and we now had all our hopes pinned on the upcoming chemotherapy.
A few days before the chemotherapy was due to start, Rayhan started to walk with a stoop, and within hours he practically couldn't bear any weight on his legs, and he was losing use of his arms and fingers. Heartbreakingly, we realised he was slowly becoming paralysed.
He had his first session of chemotherapy on Monday 2 April 2018. That night, everything started to go terribly wrong. Rayhan’s temperature began to spike, his oxygen levels dropped, and he started having an allergic reaction to one of the chemotherapy drugs. The medical team was panicking as they did not know what was causing these symptoms, and promptly administered antibiotics.
Throughout the course of the week, Rayhan’s health was deteriorating. His oxygen kept getting increased, but his breathing was not getting any better. He was paralysed from the neck down and he wasn’t eating or drinking. By Thursday, it became quite apparent that we were looking at end of life. By Friday, we had a serious talk with our oncologist who said that now was the time for prayers because Rayhan’s time with us was limited.
Sarfraz and I both stayed with Rayhan on Friday night. The nurses told us to try to get some sleep, and that they would wake us if anything happened. Our nurse came in just before midnight and said we should call family in. We held onto our beloved boy and told him how much we loved him until 04:22 on Saturday 7 April when our Rayhan took his last breaths.
Our faith states that, when a child dies, they will go straight to heaven where they will be cared for and eventually meet their parents. Since Rayhan’s death we have held onto this belief firmly, that we will see our son again and be with him for an eternity. This has carried us through many a dark day whilst grieving for our son.
We all handled Rayhan’s loss differently. I retreated into my own world, not wanting to face anyone. Sarfraz tried to stay strong for us and handled the practicalities. Zakaria also became withdrawn. He missed his little brother terribly; watching Rayhan battle with cancer had forced him to grow up.
It took a few months for us to start doing things as a family again, but it was hard with the glaring absence of our beloved Rayhan. Our home seemed unbearably quiet without him. Eliza helped us all a lot. Having a small baby with her immediate needs and innocent antics saved us from sinking in those dark days.
Three years on from the passing of our beloved boy, we feel a little stronger emotionally and we feel determined. We don't feel angry that he died because we believe that's God's plan and we were gifted with four-and-a-half years of a beautiful life with Rayhan. However, we’re angry about all the head-shaking from the doctors and how long it took to get a diagnosis. We can’t reconcile the lack of basic awareness around his very obvious brain tumour symptoms, and the lack of availability around alternative treatment options. We would not wish other families to go through what we did.
We appreciate all the work of Rayhan’s medical team and the nurses at the Schiehallion Ward. They honoured Rayhan’s treatment to the end and cared greatly for him and for us as a family. However, they could only provide or offer what they had available to them.
We have since read and followed other stories and we know we’re not alone in our grief. We know that many families have also suffered the loss of a loved one through a brain tumour, and we know that so much work needs to be done to change the outcomes of brain tumour patients.
Now, our family has the support of our local MP Anum Qaisar-Javed who has fought Rayhan’s corner at the highest level. She has questioned the prime minister Boris Johnson on our family’s behalf at Prime Minister’s Questions (PMQs), asking him how research and funding into childhood cancers can be improved, and to provide support to families like ours. She has followed this up with a written request for a meeting to discuss these issues.
We are so grateful for her support and for raising much-needed awareness about the lack of improvement in diagnosis times and treatment options. We hope we want to honour Rayhan and continue his legacy by raising awareness of brain tumours. We hope that a day comes where no parent has to stare down the barrel of such a poor prognosis for their child ever again.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been inspired by Rayhan’s tragic 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