Jonjo shares his success story

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Simone van Kraayenburg
6th August 2015
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Raymond Funnell
6th August 2015
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Jonjo shares his success story

jonjo

jonjoOn December 16th 2006, I was diagnosed with ALL (Acute Lymphoblastic Leukaemia) at the age of 23. It obviously came as a huge shock to me and due to the severity of my situation (WB count of 429) meant that treatment had to start immediately. Therefore I was placed into an isolated room at The Royal Worcester Hospital near to my hometown of Bromsgrove, England. For the next 6 months I endured highly intensive chemotherapy and given the poor prognosis, it was clear that my best chance of survival was to undertake a bone marrow transplant.

So in July 2007 I had a stem cell transplant after a donor was found as a perfect match for me on The Anthony Nolan Trust Bone Marrow Database. My donor was from Germany and my transplant was successful and after enduring TBI (total body radiation), more Chemotheraphy and contracting sever mucacitis – I was finally allowed home after 4 weeks of the stem cell transplantation procedure.

Having developed mild GVHD I slowly underwent my year long recovery from the treatment and have been fortunate to have been in a complete remission ever since. I am now 27 years old and since undergoing my treatment for leukaemia I have raised over 9,000GBP through various charity events, all for a British based leukaemia charity called Leukaemia & Lymphoma Research with the more notable achievement being that I ran the Virgin London Marathon(in dedication to my donor) in April 2010.

During the start of my treatment, I was often encouraged by family members to “be positive” and try and stay happy – it became a surprising fit to learn that my actual blood group was in fact “B Positive” – so it seemed that my very own blood group was telling me to “b positive” – I therefore adopted this as my ‘mantra’ and since I started writing a journal to log my thoughts and feelings throughout my treatment, every day I always ensured that I signed off with “Bpositive” – no matter how hard it got and how dark and lonely I felt I would always ensure that a day in my diary wouldn’t pass without me ending on a positive note.

Since my leukaemia I have advised, helped and supported patients around the globe. I was asked by the hospital where I had my bone marrow transplant (Birmingham Queen Elizabeth Hospital in Birmingham) if I would speak with patients as they viewed me as a success story – and a person who could possibly help and support patients going through the same treatment as I had previously. So I did. I was very keen to push more of this as I could see the benefit in a patient being able to talk to someone who has been through the dark hours of battling leukaemia and overcoming a bone marrow transplant – and they could see how well I looked. I was asked by an ex work college of mine if I would mind speaking to a man called John Hone, a friend of a friend. I heard John was around 60yrs of age and was about to embark on treatment for his leukaemia. Although John had a different type of leukaemia to me, the similarities within our treatments would know no end. So after conversing through emails etc we have since become very close friends… although we are yet to meet. John was about 6 months behind my treatment plan so I was in a good position to advise him in all honesty of what he was to expect with a bone marrow transplant, and so I did – and thus followed an endless stream of daily emails, communicating from one side of the world to the other in a bid to help one get through his treatment. John spoke to me of The Sunflower Fund and of all the amazing work that the charity provides in South Africa through its education and recruitment of bone marrow and stem cell donors. There is a similar charity in England (as mentioned before) called The Anthony Nolan Trust – which I worked with as part of an ongoing campaign called “Register and Be a Lifesaver” in which I went around the UK giving talks to students in schools at the age of 16-18 years old in order to educate and recruit bone marrow and stem cell donors. The results from the talks were simply fantastic and the overwhelming response of recruiters led to myself and others visiting the Houses of Parliament in London where the Secretary of State for Health and Education pledged to plough a lot of money into developing this campaign. The campaign was started by the late Adrian Sudbury whose dying wish after being told his leukaemia was terminal, was to educate youngsters on the importance of donating bone marrow.

I have many personal goals and ambitions that have been developed from my treatment of leukaemia and the predominant ambition is to help other patients and their families who are dealing with treatment. I was put in touch by John Hone of a young patient called Megan Swart, who I’m sure you know – who was about to go through her bone marrow transplant treatment. Myself and Megan, through various emails etc, became friends and along with sharing our stories and experiences of treatment, we shared many laughs and jokes. We had similar sense of humour and taste in music and despite her very poor prognosis Megan always upheld an amazing attitude and determination towards her treatment. John informed me a couple of months ago (whilst I’m away on a round-the-world trip) that sadly Megan passed away, which was tremendously upsetting.

I have plans to develop my own brand entitled “Bpositive” in order to raise money for various leukaemia charities and am currently thinking up ideas and methods to improve the communication of patients undergoing treatment for blood cancer. I am also in touch with a little 7 year old girl from Manila, Philippines who is battling leukaemia and wrote her a letter of encouragement to which she made me a ‘thank-you’ poster and recorded a video. I aim to extend the support to patients to anyone who requires it – as I believe it’s essential that help and support is continuously provided to those in need.