Patient Case Study: James (Cambridge)
James was diagnosed with Mixed-phenotype acute leukaemia when he was 1 years old.
In 2005, aged 15, Katherine Boulton from Stoke in Coventry represented Great Britain in a swimming competition in the United States when she met then-President George Bush Jnr and legendary gymnast Nadia Comaneci. She enjoyed swimming competitively and was studying hard for her GCSE’s. She was fit, healthy and full of energy.
She developed a bruise for no apparent reason and went for a blood test. After nine days she was told she had Acute Lymphoblastic Leukaemia, a form of blood cancer more common in 2-5-year-olds. She missed a year of school but still sat her GSCE’s during her treatment.
For Katherine, chemotherapy has been the easy part.
Long hours were spent in a hospital, friends of hers came initially but soon dwindled as they struggled to deal with her illness at that age. The treatment was long but it kept the disease at bay until 2009.
After fours, years of treatment Katherine developed Acute Myeloid Leukaemia. She began treatment at the Queen Elizabeth Hospital in Birmingham under the care of Dr Sandeep Nagra, whose position is funded by Cure Leukaemia. She needed a bone marrow transplant and was lucky enough to find a match from Wales, a person she would go on to eventually make contact with.
After her transplant, her problems really started.
She developed GVHD (Graft versus host disease) post-transplant, meaning her body started to reject her transplant which led to issues with her liver, skin and gut. To treat this she needed photopheresis up in Yorkshire for three years, a procedure that took four hours each time.
In February 2010 Katherine had renal failure meaning she required dialysis three times a week and during all this time she was trying to study for a sports degree at Newman University as a mature student.
In 2011 she developed aspergilloma in her spine and in her stomach. It spread to her lungs and two weeks before her 21st birthday Katherine was told she had two weeks to live, she might not have made her birthday. She didn’t tell her younger sister at the time because she was sitting exams and felt the news may affect her judgement during them.
Thankfully, the diagnosis was wrong and in fact, she had para-influenza in her lungs. A moment of hope.
In June 2011 Katherine had a heart attack while she was waiting to have her hips replaced after they had deteriorated due to all the intense treatment she had received over the years.
After the attack, she went into a coma for eight weeks and her parents were told she would never recover, in Katherine’s words she would be ‘a vegetable.’ Katherine’s sister Natasha had understandably found Katherine’s illness very hard to accept and in a miraculous moment in University Hospital Coventry she shouted at her older sister ‘please wake up!’
While recovering from the coma Katherine had a complication with her antibiotics which has since left her deaf in one ear and she also developed medical anorexia during her recovery, another battle she has overcome.
In 2012 she finally had her hips replaced at the Royal Orthopaedic Hospital in Birmingham and then on the 11th of October 2013 Katherine’s mother Su donated her kidney at Coventry Hospital. The procedure was a success.
She went back to her studies in September 2014, this time to do Working with Children, Young People and Families with Education Studies at Newman University and suddenly life was looking more hopeful for the then 24-year-old.
Then in June 2015, she had renal failure again and to this day Katherine is waiting for another kidney transplant. She has her dialysis at home now which is better than a hospital but she needs to be wired to a machine for eight hours every single day.
She’s done this for over 800 days since 2015.
This remarkable young woman has never given up and in May 2017 she completed her teaching degree and she graduated in October last year at Symphony Hall in Birmingham. Her dream is to be a teacher full time but without a transplant, it would simply not be possible.
In December 2017 a match for Katherine was found and she has had her kidney transplant. Currently, she is feeling fantastic and looking ahead to a brighter future.
She did.
Katherine does volunteering and uses her previous talent to teach swimming in Coventry. Katherine’s positivity in the face of such adversity should be an inspiration to us all.
She said, “I never feel sorry for myself, it’s life, these were the cards I was dealt and I have to just make the best of what I have. Without my amazing family and the fantastic care I have received over the years I would not be here now and I want to do everything I can to raise awareness. People need to know more about leukaemia and the devastating effect it has on people’s lives. All of my issues stem from blood cancer and I hope that by telling my story people understand more about this disease.”
“Leukaemia is always referred to by this name, not blood cancer, and that is why I feel that people don’t necessarily know what it is unless they have been touched by it personally. It is a cancer, it is the third biggest cancer killer, and the Midlands is leading the global fight to eradicate it off the planet.”
Dr Nagra, who still sees Katherine every six months said, “Katherine is undoubtedly one of the most inspiring patients I have ever met. The way she has fought her illness and still remained positive throughout is truly staggering and I dearly hope she can one day find a match so she can undergo another kidney transplant.
Leukaemia is a brutal disease and her story highlights just how devastating it can be.”
Katherine continued, “I also would like to raise awareness and campaign for people to opt-out of donating their organs. I meet so many people who tell me that they would gladly donate their kidney if the moment came but they are not registered to do so. Patients across the country are missing out on potentially life-saving donors because of this so I want to urge the authorities to reconsider the national stance on this.”
“I hope by telling my story I can make a difference and change the perception of this disease. I urge anyone reading this to support blood cancer charity Cure Leukaemia because it is a charity that is helping lead the global fight against the disease.”
Thank you for reading my story.
Katherine.
James was diagnosed with Mixed-phenotype acute leukaemia when he was 1 years old.
Patient Matthew talks openly about what is keeping him motivated during "the hardest time of his life".