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Inaya‘s Leukaemia Story

Inaya was just 4 years old when she started to get poorly and was soon after diagnosed with Leukaemia. Her parents tell the story so far.

Early Symptoms

It started with night sweats, fever on and off, she became paler, her skin bruised easily and she lost her appetite. Once she experienced leg pains, we knew we had to do something. We took her to our GP.

We knew something wasn’t right, but kept getting dismissed.

Our GP dismissed us several times, reassuring us it would be better in a couple of days, we realised we needed to take her straight to A&E with the hope we would get help. After an initial dismissal, one of the doctors raised his concerns about Sepsis in her joints and send us to a different hospital. Here we got dismissed with a diagnosis of flu.

Shortly after we went back for a blood test as Inaya was in so much pain. Further blood tests, X-Rays and an ultrasound followed, and we finally got a diagnosis. Leukaemia.

It was the day before my birthday, the 11 March 2025.

At this point Inaya was unable to walk, and she screamed in pain every time she tried to.

All the waiting felt like forever. Inaya’s mum, Sophie, and I became numb and hid in the toilet to cry, away from Inaya.

In the hospital

Once we arrived at the oncology ward, she soon had her surgery to receive her Hickman line. 2 days later she suddenly got very poorly in the early hours of the night and became unresponsive. She stared blankly into space, suddenly the nurses presses the emergency button, and all the doctors came running in. She was having a seizure.

They gave her medication to stop it and gave her oxygen as she was struggling to breathe. A second dose then stopped the seizure, but I was told to leave and wait outside. She was sedated to place a tube down her throat to help and she was quickly taken to ICU, where we had to wait in the family room for hours scared wondering if she was going to make it.

Finally, we were allowed to see her. She had all these tubes coming in and out of her, she was just lying still sleeping, all you could hear is all the machines beeping. We held her hands stroking her hair and talking to her hoping she could hear.

They run tests to check her brain activity, and she had a CT scan as well as a MRI which found white lesions on her brain which led to her diagnosis of PRES, a rare complication of chemotherapy.

We knew nothing about PRES and want to spread awareness about this. She also got diagnosed with chicken pox, so all treatment was paused until it cleared. This worried us because we thought the cancer would get worse. She was put on medication to help this along with NG tube feeds.

Inaya recovered and was moved back onto the oncology ward where treatment slowly began to be re-introduced but no steroids.

The treatment

Inaya spent a total of 6 weeks in hospital, she had many lumbar punctures and blood transfusions, and leukaemia cells were detected in her spinal fluid so they decided to try her on blina treatment. She underwent surgery to replace her single line to a double and started her first cycle. Inaya had MRD (minimal residual disease) likely from her treatment pause. Each blina cycle lasted 4 weeks and the bag got changed every 3 days.

She did so well on this treatment and after the second cycle she was in remission but had intensified treatment due to protocol. Inaya suffered during this part of treatment, she had terrible sickness couldn’t eat or drink much she lost so much weight and suffered with mouth sores. Her follow up MRI showed that the white lesions were still there which was the result of her being on the high dose chemotherapy.

Inaya now

She is due for another follow up soon. Inaya has now started maintenance and is doing so well but still needs a blood transfusion here and there and is admitted for fevers. She got an infection in one of her lumens which has paused maintenance for now, but we are hoping the maintenance goes a lot more smoothly. She is such a brave strong girl. Inaya is now 5 years old she lost her hair twice but is now starting to grow back! It has been a difficult journey and we just hope her story can encourage and help other parents who are in a similar situation as us.

No child, especially this young, should go through this and it’s a parent’s worst nightmare hearing your child has cancer.

Aadil and Sophie, January 2026