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Andrew

September is both sepsis awareness month and childhood cancer awareness month, today Donna Self tells us about her son Andrew, who developed sepsis whilst on chemotherapy for leukaemia.

When Andrew was two years old he was diagnosed with a myelodysplastic syndrome which had the possibility to evolve into Acute Myeloid Leukaemia.

Unfortunately this is what happened and Andrew was put forward for a treatment protocol of four courses of in-patient chemotherapy.

After the first course Andrew developed a Gram negative rod blood infection mainly due to him being neutropenic (having lower than normal levels of neutrophils – a type of white blood cell to fight infection present in your blood) because of the chemotherapy treatment. He was immediately transferred by emergency ambulance to PICU (Paediatric Intensive Care Unit), put on a ventilator and later that evening was diagnosed with sepsis.

We were advised that it was very unlikely that Andrew would survive the night as the sepsis had taken hold of his body which was, by now, bloated to twice its normal size and a horrible mottled colour. After about a week, the army of IV antibiotics seemed to be doing their job and I remember very clearly the day that everyone was hoping for – the kidneys released urine meaning that the swelling was starting to subside naturally – but not before Andrew’s lungs filled with fluid causing him to go into cardiac arrest. That was probably one of the scariest moments of his whole treatment, seeing medics running into PICU whilst I stood by watching them trying to save our son.

He spent two weeks in PICU and a further week in a room on the children’s ward waiting for his little body to recover from the horrible effects of all the antibiotics including lots of screaming as he struggled to understand what was happening to him – he became scared of all of his previously loved soft toys.

It took some time for Andrew to fully recover from the sepsis – he had lost a lot of weight and muscle strength and had to relearn how to stand and walk – something he had achieved already before his AML diagnosis. He also stopped saying the few words he had learned and was generally quite listless for a few weeks after his discharge from PICU.

We were so very thankful and relieved that Andrew had survived such a horrible disease as we knew that we were very close to losing him, but this was coupled with anxiety that this was only the first course of four chemotherapy treatments and were naturally concerned that the subsequent chemotherapy courses would have the same reaction as the first. As soon as his body had recovered significantly enough his treatment continued, and fortunately all went well. Six months after that horrible experience, Andrew was in remission and has been ever since.

I never like to tempt fate by saying he is clear from the leukaemia and, indeed, the type of drugs used have left him with him with a mild heart dysfunction requiring life long medication. Fortunately, Andrew doesn’t remember anything about his illnesses at that time although he knows he had cancer and sepsis and was very poorly .

He often tells me how much he loves his life and lives it to the fullest. To see him now and how much he has achieved, especially with his dancing, is quite incredible considering how ill he was.

He has a talent for dance and has taken part in many performances – his audition on BBC’s The Greatest Dancer in February 2019 was a massive turning point in his life and gave him so much confidence as well as inspiring so many people around the world – it has now been seen hundreds of millions of times and the messages and comments still being posted and received are wonderful. He has recently been chosen to be in the first cohort of twelve dancers of Matthew Bourne’s new Cygnet School which is an amazing achievement, one we would never have hoped for or imagined all those years ago when he was so ill. He is also classed as moderately/severely deaf so struggles with communication sometimes. He has worked so hard and we are very proud of all he has overcome and the challenges he still lives with.

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