Sumayyah’s story: “I love dressing up like a princess but I’m no typical fairytale princess. I am more than my cancer.”

Childhood Cancer Awareness Month is here and children, like me, are taking over Young Lives vs Cancer platforms… 

Mummy and I want to tell you a bit about my story, and why I am more than my cancer.

“I remember the event so vividly, it was a life-changing moment for me. Sumayyah was in my arms, I kept crying saying ‘no this is not happening”

Amira had just been led into a doctor’s office, she had clocked the box of tissues and glass of water that sat in the middle of the eerily quiet room. A far cry from the whir and buzz of the hospital ward the other side of the brown door.

Despite weeks of taking her poorly toddler back and forth to the doctors, she never dreamed it would be as bad as this. It’s cancer.

“She started feeling unwell in July, it started with tonsillitis and a fever. She wasn’t eating well. I went to the GP and he checked her and said it’s a minor case of tonsillitis and she’ll get better with a week’s course of antibiotics. After that I went home, finished the course of antibiotics and the fever didn’t go away. I was trying to get her to eat and drink, when she was ill with the tonsillitis everything stopped.

“My heart kept telling me something’s not right and I just felt uneasy. I kept going back and forth, I felt at this point that I wasn’t being heard, I wasn’t being taken seriously. I knew something was wrong with my child.

“I went there to the hospital in A&E and finally bloods were done and they said ‘why is she so little? Why has she lost so much weight?’ and I said I’ve been trying to explain she’s been losing weight and she has not been eating and she has been so poorly. They were the tests she needed.

“Then, it was the night of the 23rd of August, late at night when she was asleep, the team came and told me ‘I want to talk to you in private’.

“Everybody sat there I noticed a table, there was water and a box of tissues and everybody was looking at me, I just couldn’t think what was going on but I knew this wasn’t going to be good news. And then the doctor looks at me and tells me ‘your daughter has leukaemia’ and that’s when everything fell apart.”

For the next six months, she stayed by her daughter’s bedside, as she watched 19-month-old Sumayyah go through rounds of chemotherapy.

That wasn’t the last time she would be brought into a doctor’s office, with tissues once again on display. A few months later, Sumayyah’s cancer had returned. She had relapsed.

“We were home trying to live a normal life and five months later Sumayyah relapsed and was taken back into the hospital. It was a big shock. When we went back in the hospital I met Adama, she was my social worker. She gave me support through this journey again.

“Adama was someone I could talk to and relate to and she would hear me out if I wanted to just blow off some steam. It was difficult as this time Sumayyah needed a transplant. My Mum had to come from Tanzania to assist me for my daughter’s transplant because I was told it would be a few months and she would be in isolation and so I needed extra support. They helped me with supporting letters and with them I managed to do a visa application for my mother and she came from Tanzania.

Sumayyah had a life-saving stem cell transplant in August 2019, after her Mum donated her cells. She was doing well at home, on steroids to help with the side effects that she had after the transplant.

Then, in 2020, Sumayyah was admitted to hospital again after her Mum found her unresponsive, suffering with seizures.

They spent the majority of lockdown – March to May – at Great Ormond Street Hospital without any visitors. Amira struggled with the isolation, and flashbacks to Sumayyah’s seziures. Adama stepped in to help.

“We were back in hospital for a long time from March up to end of May for the lockdown period. It was just me and her, no visitors, my Mum was alone at home she wasn’t allowed to come and visit me. In that time during lockdown from March to May, it was one of the most intensive things we have gone through with everything – nobody to talk to, the social interaction with other parents was limited because the kitchen had only one person in and out so we had no one to talk to, you couldn’t meet other parents easily and communicate, it was a vulnerable time.

“After Sumayyah’s March incident when she had a seizure in the middle of the night, I had post-traumatic stress disorder, I kept replaying the images in my mind, the events that happened and if there was any way I could have prevented it. I felt like I nearly lost her. I needed to talk to someone. I spoke to Adama over the phone, and a psychologist over the phone and it really helped, speaking to someone about it makes a difference.”

Despite all of the struggles Sumayyah has been through, she is a positive ray of light and is enjoying being at nursery and causing mischief!

“Several months later, now Sumayyah is doing well. We’ve had hiccups and ups and downs in the journey, especially during the time of the coronavirus and the lockdown. With isolation we didn’t know what was going to happen and CLIC Sargent did all they could to help in a difficult time. We are really grateful for everything they have done for us. Sumayyah is home now and she is happy and I wouldn’t have been able to do this on my own.”

Sumayyah constantly keeps her Mum, Amira, on her toes – if she’s not singing and dancing, she’s pretending to film her own YouTube videos or dressing up as a princess.

“Her confidence is outstanding and I believe that is where her strength comes from”

After almost three years in and out of hospital, she is set to start school this September and has been counting down the days until she gets to walk through the gates on her first day.