Rayyan's Story

Annie and Rayyan

By Annie (41) from Ellon, mum to Rayyan.

It’s been three years – almost to the day – since my son Rayyan was diagnosed with acute lymphoblastic leukaemia at the age of seven.

Our lives have been changed dramatically by the diagnosis and felt most deeply by my brave boy.

Rayyan’s diagnosis wasn’t straightforward. We had been seen by our GP twice after the appearance of a lump behind his head in October 2018, and another next to his ear in January 2019. On both occasions we were sent home and told not to worry, which we didn’t, because he was a very healthy and active child.

It was at another, unrelated, visit to the doctors in May 2019 - this time with a trainee GP - that prompted further investigation. The trainee asked when the lumps had appeared and whether we’d seen a specialist. A few days after the appointment the trainee called me to say she’d spoken with her tutor who had referred Rayyan to Aberdeen Children’s Hospital.

In July 2019 we went for the appointment which at first seemed positive. Rayyan’s blood tests were clear, but the medical team wanted to do some further checks. After another paediatrician referral, an MRI scan and a biopsy on one of the lumps, my husband and I were called by the medical team for an urgent meeting.

In September 2019, we found out Rayyan had leukaemia and would require three years of treatment.

Our new life began very quickly with Rayyan fitted with a hickmann line – a long, hollow tube placed into a vein in his chest – before he started an intensive course of chemotherapy.

The tube caused a lot of frustration for Rayyan – he had not long started swimming lessons and had to quit as we couldn’t get it wet. Even having a bath was difficult.

The treatment was also hugely disruptive to his schooling. Rayyan missed class from September 2019, and didn’t return until March 2020 when learning was online due to the pandemic. This caused a lot of anger for him, being such a social child who loved being in the classroom with his friends.

It was a very unsettling time, but I was determined to try to keep things as normal as possible and a social worker from the hospital recommended we contact Clan Cancer Support for help.

In March 2020 we were put in touch with Naomi from Clan’s Children and Family Services (CFS) team. She completed one to one therapeutic work with Rayyan, allowing him time to vent his frustrations around missing school. During Covid restrictions Rayyan joined an online wellbeing group organised by the charity and a Zoom storytelling session which became a highlight during lockdown and something he genuinely looked forward to. Once restrictions were lifted, Rayyan attended a fortnightly group session at Clan House which allowed him to speak to other children who were either going through cancer treatment or were dealing with a diagnosis in their family. These activities gave Rayyan a bit of breathing space and the chance to make friends with kids who were going through something similar. More than anything, it gave him time to be a child again.

Rayyan rang the bell after completing his final treatment in June earlier this year, six months earlier than predicted. His cancer journey has shaped him and will stay with us forever. He’ll continue to be monitored monthly for some time and even as an adult he’ll require check-ups to ensure his developing organs weren’t damaged as a result of the chemotherapy.

He is now back at school and loves his Xbox, going to the zoo and getting treated to a cake at the cafe. He still meets with his friends from Clan and has enjoyed specially organised trips to Aberdeen Science Centre and Clan House, with the option to receive further support available to him and our family should we need it at any time.

This childhood cancer awareness month I am grateful for the support we were given at the most difficult time in our lives. The support of friends, family and organisations like Clan who helped us to keep life as normal as possible, even when it felt scary and out of control.

I’m also grateful for my beautiful son Rayyan who demonstrated how brave and resilient children can be, taking every treatment in his stride and never complaining about the side effects.

For anyone reading this who is affected by childhood cancer, take one day at a time and accept support. It’s not something to be faced alone.

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