“Research is a chance to prevent heartbreak before it begins” – Kaiya’s story

Kaiya Patel was five years old when she was diagnosed with an aggressive form of acute lymphoblastic leukaemia (ALL) in March 2018.  She passed away ten months later at the age of six.  Since then, Kaiya’s mum Annu and her dad Ruchit, have set up The Kaiya Foundation in their daughter’s memory and are supporting our vital research into high-risk leukaemia. Here, Annu shares their story.

In the summer of 2017, Kaiya had been twirling around, dancing at home with her younger sister, Annika, when she knocked her tooth. It was wobbly, so we had it checked by a dentist. He said that it might fall out earlier, but there was nothing to worry about, particularly as it was only a baby tooth.

Then, in March 2018, the tooth started bleeding and Kaiya's symptoms started to appear. I thought perhaps she had hit it on something again, so we had it checked and were told everything was OK. Around the same time, we noticed a couple of bruises on Kaiya’s body, but she was a very active five-year-old who loved running around and dancing, so we just assumed she had knocked herself. The worst-case scenario never crossed our minds.

I remember dropping her at school one day, and as she ran upstairs into the building, she fell over. I watched her wave at me from the window and she carried on with her day. When she came home that evening, I noticed a really angry bruise where she had fallen. It was far more aggressive that I would have expected from the fall that I’d witnessed – something didn’t quite add up.  However, I never suspected she could have cancer. She was very healthy, ate well and exercised a lot. None of us smoked and we had always parented to the book.

I sent a photo of Kaiya’s tooth to a cousin of mine who was a GP and also to a friend of ours who was a doctor. It was towards the end of term and we were booked to go on a family holiday to California over the Easter holidays. Everyone was very excited about our trip, especially Kaiya.

Our friend suggested we take Kaiya to A&E and push for blood tests. She clearly had her suspicions about what might be wrong, but didn’t want to alarm us at this point. In hindsight, I suppose the signs had been there.

We had planned for the girls to go to school for the morning before we left for our holiday and were due to catch our flight to California in the afternoon. We decided that Ruchit would take Kaiya to A&E and I would head to the airport with Annika and the luggage – and they would meet us there after being checked out at the hospital. But as I was on my way, Ruchit called to say that Kaiya’s blood tests showed her white blood cell count was extremely high, the doctors suspected leukaemia and she needed more tests. At that point, I felt certain there was some mistake.

“I kept telling myself that Kaiya would be fine”

I called our family and everyone came straight to the hospital. Kaiya was the first grandchild in the family, so she was very special to everyone.  My brother took Annika for me and all our luggage, so that Ruchit and I could stay at the hospital with Kaiya. In front of her, I tried to pretend that everything was OK. But I was feeling numb. Nothing made any sense to me and I did not want to believe what was happening. I Googled ‘leukaemia’ and saw that it was highly treatable, and this made me feel optimistic. I kept telling myself that she would be fine – she had to be. How could I live without her?  Nothing bad could or should happen to her.

Hours went by and the doctors were still unsure what type of leukaemia Kaiya had. They had not seen bloodwork like this before, so we were blue-lighted to Great Ormond Street Hospital. Kaiya didn’t fully understand what was going on. She was disappointed to hear that we wouldn’t be going on holiday, but she believed we would go later. We were all trying to keep the mood light for her.

It was late at night when we arrived at Great Ormond Street. Kaiya had a line fitted and chemo was started straight away.  It was about two weeks later that we were told her exact diagnosis: she had high-risk acute lymphoblastic leukaemia and her prognosis was poor. I felt like I was going to black out. But we were determined that this would not be how it would end for her, we had to find a way to make her better.

Ruchit reached out to people he knew in the medical profession and the pharmaceutical industry. He read countless medical journals.  He told me not to read anything so that I would stay positive. I think this was his way of protecting me.  Kaiya’s consultant was trying to come up with the right treatment plan. He was open to all suggestions and did not want to give up.

Kaiya was in hospital for about three weeks before being allowed to continue her treatment at home. At first, she responded well to the chemo. In the middle of May, she returned to school for a few hours a day.  But we were warned that with this type of cancer, even if she did well on treatment, it would nearly always come back.

“Doctors said it was unlikely she would survive until Christmas”

We tried immunotherapy for four weeks in an attempt to prevent a relapse and looked into the options of a bone marrow transplant or possibly CAR-T therapy.  It was suggested to us that a bone marrow transplant would be the best first option. If this didn’t work, we could consider CAR-T therapy at a later date.

As there are very few Asian donors on the registry, we knew it would be very hard to find a match for Kaiya. The whole family were tested, but none of us were suitable. We embarked on a publicity campaign to raise awareness about stem cell donation in the hope of finding a donor for Kaiya. Her story went viral and encouraged 40,000 people to join stem cell registries in her name.

As a result of the campaign, three possible matches came to light. By now, Kaiya’s doctors were saying it was unlikely she would survive until Christmas without a transplant.

“I convinced myself that she would defy the odds”

Following Kaiya’s immunotherapy treatment, she started radiotherapy in August to prepare her for her stem cell transplant. Her hair had just started growing back and it was tough seeing her lose it again. Kaiya had always been a very girlie girl, but she never complained about her hair loss or the moon face she developed due to the steroid treatment.

This was the first time I really saw her struggling. During her whole fight, she had been tired, but she pushed through everything with such stoicism.  Now, she was weak and sleeping a lot. It crossed my mind that she may not make it, but I suppose I was in denial. I did not want to think that it could happen to her and I convinced myself that she would be the one to defy all the odds.  I certainly don’t think Kaiya ever thought she would die.

Her stem cell infusion took place on 28 August.  She suffered the usual symptoms afterwards and slept a lot, allowing her body to rest.  We tried to plan something to celebrate her sixth birthday on 2 September, but she slept through most of the day.  We were aware that she had picked up a virus and this would be hard for her to fight with her immunity levels at zero.  She remained in isolation in hospital, allowed to see only myself and Ruchit.  Annika and the rest of the family would visit her through the glass window of her room.  I promised her that I would stay with her until we were able to go home together – and I lived with her at the hospital for five months until she passed away.

I have subsequently learned that it was a Polish lady who donated her stem cells for Kaiya. We were allowed to be in touch with her anonymously for the first two years after Kaiya’s transplant and after that she contacted us via social media. We have since learned what an incredibly lovely and special person she is.  She is a single mum whose family were against her donating, but she went ahead anyway, knowing that her stem cells were going to a little girl, like her own. She felt so bad that she was unable to save Kaiya, but I hope one day we will get to meet her to thank her for what she did.

“I could not face the thought that she was unlikely to recover”

At times in her last months, Kaiya seemed to get some energy back and enjoyed the hospital teacher coming to visit her to do some schoolwork. But her viral count was going up each week.  We were never truly ready to face what happened after that.  Kaiya was taken to the ICU twice and by the start of December, Ruchit began to realise that she was unlikely to recover. I could still not face this thought.

Kaiya’s liver function started to deteriorate and her oxygen levels were low. By mid-December, she was not doing well.  In early January, we tried an infusion of some of Ruchit’s blood cells and I felt that there was still hope.  But on 8 January, she was readmitted to the ICU.  She was still talking and I spent the time reading to her which she enjoyed.

The night before she passed away, the doctors warned us that if they put her on ventilation, she would be unlikely to ever come off. I still didn’t want to believe them. That night, Kaiya kept calling out for me and I sat with her all night. When the doctors told us they felt she was deteriorating, we called the family to come.  I climbed into bed alongside her and she passed away on 13 January.  Right up until the last few moments, I kept thinking that she would be OK.

“We think of Kaiya every day”

The months after Kaiya died, were incredibly tough. Annika turned four three weeks after Kaiya passed away. She kept wanting to go back to the hospital, thinking that Kaiya would still be there.  She was confused by the fact that we had gone from discussing her birthday celebrations to planning a goodbye for Kaiya.

Of course, we think of Kaiya every day and miss her enormously. She was incredibly kind, generous, thoughtful, funny and amazingly brave. When she was first diagnosed, I thought she would struggle, but she fought her cancer with such strength and grace, she never complained. 

In 2021, we had another baby.  We named our son Kian, choosing a name that connected us all to Kaiya. Annika talks to him a lot about her big sister and they both greet Kaiya’s photo every day when they come downstairs with ‘good morning, Kaiya’ and when they head up to bed, ‘goodnight’.  When it comes to marking Kaiya’s birthday or the anniversary of her passing, I leave it to Annika to decide how we should do it. I’m aware that it is very difficult for her, but we make sure that these dates are always remembered as a family.

“Research represents a commitment to protecting future generations”

I can’t help but feel angry that there was nothing more in the way of treatment available to Kaiya. I wish the government would fund more research so that we don’t feel like we are always simply firefighting. Research is so crucial if we are to understand why these cancers occur and treat them accordingly.

The loss of a child is a pain no parent or family should ever have to endure. We don’t want any other family to be told that there is no treatment plan for their child. That is why cancer research is so important to us, and why we chose to support The Institute of Cancer Research. We need to put real work into research now, instead of reacting when it’s too late.

Ruchit heard about Professor Sir Mel Greaves and the impressive work he is doing in the area of high-risk leukaemia.  We decided to donate £25,000 to fund his pilot project looking at a potential new cure for this disease. For us, it represents hope, progress, and a commitment to protecting future generations. It's a chance to prevent heartbreak before it begins.

We are world leaders in the study of cancer in children, teenagers and young adults and have made huge strides over the past decade in improving treatment options for children with cancer.

This progress is made possible by long-term investment in this area of research, including from our supporters and family charity partners.

But treatment options for children remain limited. Your regular donations will help us develop the new, kinder innovative treatments that are urgently needed for children with cancer.

Make a donation now