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Story Written 2016
Connor was born 5 and a half weeks early after a difficult pregnancy. Shortly after this he was admitted to the paediatric intensive care unit as he stopped breathing. He remained in the PICU for the majority of the following year whilst they tried to find out why he was having constant episodes of apnoea or complete failure to breathe. They eventually diagnosed Connor with Congenital Central Hypoventilation Syndrome (CCHS). It was also discovered through a DNA screen, that Connor has an extra chromosome, this has caused an array of issues for him.
Over the years Connor has also been diagnosed with a learning disability, dyslexia, autistic tendencies, an anxiety disorder, tourettes syndrome (Connor has facial and body tics and twitches and makes squeaking noises when he gets scared or over excited). Connor also suffers from sensory processing difficulties.
At the present time Connor is still undergoing neurological tests to find the cause of his extreme fatigue and pain. Due to this, Connor only attends school on a part-time basis and his life is very restricted. He has to spend at least three days a week in bed. Connor does not get many opportunities to go to activities or on outings, as he needs a couple of days to recover afterwards and often becomes ill whilst out. Despite this Connor doesn’t complain and is a very kind and considerate boy.
Story Written 2016
Lewis was diagnosed with acute lymphoblastic leukaemia in November 2015, he was six years old. Lewis had collapsed at home and was taken to our local hospital where a simple blood test revealed he had cancer of the blood. From there, he and his family were taken by ambulance to the Leeds General Infirmary paediatric oncology unit.
Treatment began straight away and a once lively and vocal Lewis quickly turned into a bed bound, tired and poorly little lad. He needed lots of red blood cell transfusions and platelets to support him as the chemotherapy destroyed his bone marrow so his cancer would too be destroyed.
There were many side effects to this initial stage of treatment – dexamethasone (a steroid) gave him diabetes which required finger pricks 3-4 times daily and an injection of insulin to his stomach. Another chemo drug caused a thrombus in Lewis’ popliteal artery from which he still is unable to walk on his left leg. There was also the daily Tinzaparin injections to thin his blood to cure the thrombus which Lewis found very painful.
Something called a port was implanted into Lewis’ chest so blood samples could be taken more easily and the intravenous chemo given. This got infected. Lewis had a nasty infection to fight off over the next two weeks while having chemo.
Lewis missed his seventh birthday and Christmas as he was an inpatient for 8 weeks. Battling on, Lewis attended school in his wheelchair with a sick bowl close to hand. The first eight months have been hard for him with numerous re-admissions for infections. In the future, Lewis wants to meet Dan TDM, have hair and be able to run. At the end of treatment (March 2019) Lewis wants a pug puppy.