Anonymous donor saves life of girl, nine, who asked mum ‘am I going to die?’
PUBLISHED: 18:00 18 June 2020
A nine-year-old girl’s life was saved by an anonymous blood stem cell donor after a brave battle with leukaemia in which she asked her mum ‘am I going to die?’
Imogen Roe, from Norwich, had just turned six when she was treated for routine tonsillitis. But her worried parents, Anna and Dean, took her back to the doctors when they noticed abnormal bruising and a rash on her body.
They were told to take Imogen to their local hospital, and were soon confronted with the devastating diagnosis.
Mum Anna, 38, said: “We suspected it was a reaction to penicillin at worst. But within an hour of being at our local hospital we were told it was leukaemia, and within 24 hours we were in Addenbrookes Hospital. It all happened so fast, I don’t remember feeling much other than panic and shock.”
Because of the aggressiveness of her leukaemia, young Imogen began two-and-a-half years of high dosage chemotherapy.
Anna said: “Imogen was such a trouper, and very co-operative which made for a very easy patient!
“I cannot believe how well she just got on with things; cannulas, nose tubes, general anaesthetics, surgery - even though at times she has been very scared about procedures.”
During this time the family was divided, with Imogen and her mum in Addenbrookes, whilst Dad Dean, 39, stayed at home with their other two children, Imogen’s twin sister Charlotte, and older brother Liam, 11.
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In January 2019, almost three years after her diagnosis, young Imogen finished her chemo and rang her end of treatment bell to huge applause from doctors, nurses, hospital staff - and her proud, but exhausted parents.
The young family were finally able to get their lives back on track, but unfortunately more heartbreaking news was just around the corner.
Anna said: “It was July 2019, almost three years to the day since Imogen’s original diagnosis, and we had just bought a puppy and booked a family holiday abroad with friends. Then we noticed that familiar rash on her legs, and were told to bring her to hospital.”
After undergoing tests, doctors confirmed the worst – Imogen had relapsed and the leukaemia had come back.
Doctors revealed that, in addition to further chemotherapy, Imogen’s best chance of beating the disease was to have a blood stem cell transplant from a matching donor.
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Imogen’s siblings were both tested, and the family were delighted to be told that her sister Charlotte was a 100% match.
However, after further tests, they were confronted with shocking news – after a decade of thinking Charlotte and Imogen were non-identical twins, they were in fact identical, which meant that Charlotte would not be a suitable donor after all.
Doctors began looking for Imogen’s potential lifesaver elsewhere – searching the worldwide register of potential blood stem cell donors, hoping to find a perfect stranger who happens to be Imogen’s ‘genetic twin’.
With Imogen’s life hanging in the balance a match was found. Cord blood, donated by a new mother in the USA and frozen nine years prior, was a perfect match for Imogen. This was the only suitable match for Imogen anywhere in the world.
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As the frozen cord blood was prepared to be flown from America to the UK, Imogen had 10 days of conditioning treatment prior to transplant; four days of extremely strong chemotherapy, and then eight sessions of total body irradiation, to prepare her to receive the new blood stem cells.
This is an incredibly vulnerable point in any treatment plan. The new marrow should, over a few weeks, start to regenerate within the body, but for Imogen, after 36 days of daily blood tests, there was still no sign of any new cells being manufactured.
Her mum said: “It was a very serious situation as without any white cells to fight off infection, Imogen was extremely vulnerable even from her isolation room, as you can pick up bugs from your own body.
“Ten days post transplant she got an infection, and she went into septic shock. This led to several serious viruses, a chest infection, and bacterial infection. We had the rapid response team on standby for a transfer to intensive care, but Imogen pulled through, just as her dad arrived after making the five hour journey from our home”.
Imogen remained in isolation in Bristol for 99 days, fighting off multiple infections, whilst dad Dean travelled the five hours back and forth between home and the hospital to bring Anna clean clothes and supplies.
Finally, Imogen was transferred back to Addenbrookes to continue her recovery – one step closer to home.
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On March 13, in the midst of the Covid-19 pandemic, she was finally discharged and returned home to her mum, dad and siblings, who are now all self isolating.
It had been 170 days since she, or mum Anna, had seen any extended family.
Speaking about Imogen’s anonymous donor, Anna said the family were acutely aware of the luck involved in finding a match.
She said: “Imogen had just one match. There are some people we know through our time in hospitals who were fortunate enough to have a selection of matches, and many others are still waiting for a match that may never come”.
• If you are aged between 17 and 55 and in general good health, you take the first step to register as a blood stem cell donor by registering for a home swab kit at dkms.org.uk
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