Connor S

10 December 2016

**Please do not send any food or drink containing caffeine**

Story Written 2016

Connor was born five 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, and Tourette’s 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.

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Lewis Brian B

10 December 2016

**PLEASE DO NOT SEND LEWIS BRIAN B ANY SUGARY SWEETS**

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 three to four 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 eight 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.

Update 1st October 2017

Lewis has been a little poorly due to an increase in his chemotherapy to cure his leukemia. His school trip and parents evening were ruined as he was vomiting lots and so he was admitted to hospital.

Update 21st August 2017

Lewis is using a splint for his left leg but he manages unsupported by crutches now and only uses a wheelchair when the drugs get the better of him. He still wants to run and play tag with his friends. The Physio team are working on this.
His hair has grown back and now Lewis even goes to the hairdressers! Lewis has learned to take a tablet too and eats well so his nasal tube was removed.
The plan is that Lewis will finish his chemotherapy in march 2019.
Lewis loves knowledge and pics of animals, dinosaurs, pigs and dogs but any unusual animal too.
Though Lewis is so very grateful for all his gifts and posts could you kind people not include sugary sweets. Any dental problems could be a headache to treat.
Thank you so much for supporting Lewis with your extra smiles they help him so much

Update 15th June 2017

Lewis has two years left of leukaemia treatment and is still lame in one leg after early side effects to chemotherapy gave him a blood clot. He struggles with normality due to the drugs but loves school and attends as much as he is able to. Lewis loves to swim but can only do so if his bug-fighting cells are good enough. He wants to be able to run again. Lewis likes all animals and info pictures, etc, about them. Lewis likes DanTDM and had a wish come true to meet him earlier this year. Lewis likes Roblox and Star Wars, too. His favourite animals are pugs and he hopes to have a Chug (Chihuahua x pug) one day.

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