US stem cells give Edinburgh 11yo a second chance

Rory Kemp and his mum, Jenny. Picture: contributed

Little Rory Kemp seemed so happy and healthy that his parents were stunned when tests revealed he had a rare and aggressive form of blood cancer which starts inside bone marrow – the soft tissue inside bones that helps blood cells to form.

But despite his bravery and his “beaming smile” during gruelling bouts of chemotherapy, Rory still needed a stem cell transplant to save his life.

No-one in his family was a suitable match, so his parents Jenny and Merlin, both 39, had to place all their hopes on finding a donor through the bone marrow register.

Potential donors sign up by giving a small blood sample but there is only a one-in-900 chance of being selected in the UK.

His family endured an agonising wait after one donor fell through but their prayers were answered when doctors tracked down an anonymous American donor, who was the only match for Rory in the world.

The cells were harvested during a four-hour long hospital procedure, where the donor’s blood passes through a series of drips to extract the stem cells, before being flown across the Atlantic to Glasgow for Rory’s operation.

His mum Jenny said: “Cancer nearly took our son. It took over two years of his life and of our family’s life.

“There are not enough stem cell donors in the world. When Rory needed a transplant we were told that no-one in his family or in the UK or even in Europe matched his tissue type.

“Thankfully there was one willing match and that person’s cells were flown over from America to Glasgow and the transplant went ahead.

“I’m so proud of Rory. Cancer forced him to grow up very quickly. It’s been an extremely arduous struggle but through it all he’s kept his beaming smile.”

It began when Rory went to the doctor after discovering a lump behing his right ear.

When doctors found another lump at the top of his skull, he was sent to the Sick Kids Hospital where further tests revealed he had acute myeloid leukaemia in February 2014. Jenny, of Lochend, said: “Eventually, we got taken into a little room. There was a box of tissues on the table and we thought, ‘Oh, here we go’.

“It was a shock to all of us. Rory was with us when we were told. He didn’t burst in to tears. He was quite calm. We were told on a Friday afternoon but because he was in such good physical shape they didn’t admit him straight away.

“They told us to go home and have a nice weekend and start the chemo on Monday, which was very surreal.”

The primary seven pupil embarked on four cycles of chemotherapy and a bout of radiotheraphy, which caused his hair to fall out and made him extremely sick. He was confined to an isolation ward for much of his six-month hospital stay, due to risk of infection, but staff continually praised Rory for his positive attitude.

However, it became clear he would need a stem cell transplant in order to save his life, and after a long search, he received the transplant at Glasgow’s Yorkhill hospital just days before Christmas 2014.

Jenny said: “We were all anxiously waiting for the arrival of the stem cells from the donor who was the one match in the world for Rory.

“When it arrived it was a huge relief but soon he became very unwell.

“I remember around that time the doctors told me that Rory was the most unwell child on the ward. When that’s a ward of more than 20 cancer patients that really is quite a scary thought.”

The donor cells attacked his body and a chest infection left Rory struggling to breathe, so doctors considered moving him to an intensive care ward as his immune system was so weak.

By February last year, Rory was well enough to go home – but just as life was about to return to normal he was struck with another bout of graft-versus-host disease, where the donor cells attacked his body’s own cells.

He was forced to spend six more weeks in hospital for treatment. In November he was finally well enough to return to school part-time and he is now well on the way to recovery.

Jenny said: “Rory has had to see things a boy shouldn’t have to see. Rory has faced his own mortality. He thought he was going to die and he’s talked about that. It’s made our family very close.”

Rory was awarded a medal for courage at a special party for children diagnosed with cancer hosted by Cancer Research UK Kids & Teens, in partnership with TK Maxx.

Lisa Adams, CRUK Kids & Teens spokeswoman for Scotland, said: “It is a privilege to be able to recognise the courage of youngsters like Rory. He is a true star.”

The campaign aims to boost research to find kinder treatments and cures for children and teenagers with cancer.

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