In June 2012 we sadly lost our 2 year old son to haemophagocytic lymphohistiocytosis. It all started with a simple ear ache that did not clear up after several types of antibiotics.
Initially Oliver was admitted to Peterborough Hospital on 26th May where several blood tests and lumbar puncture tests were carried out but with no positive results. After having a prolonged seizure he was transferred to Leicester Royal Infirmary to their Specialist Children’s intensive care unit (CICU). At this point Andrea was 36 weeks pregnant with our second child.
After nearly a week we had a confirmed diagnosis of HLH and the standard protocol was to treat it with a course or Steroids and Chemotherapy. This was to try and control his immune system which had gone into overload; this in preparation for finding a bone marrow donor. Although it was a lot to take in we thought things were looking up for him.
At this point Andrea went into labour, 3 weeks early! This left me with a child in intensive care and my wife on the other side of the hospital in the maternity unit, I felt where ever I was I should be with the other. Our second child was born on the 30th May and we named him Toby. As they would not allow a new born baby to be in the CICU we had to keep swapping around who was with Oliver. Only when we had visitors could we both be in with Oliver. Unfortunately just a few days later Oliver’s condition took a sharp turn for the worse. He sadly passed away on the 5th June.
It was hard for us as a couple to celebrate Toby’s arrival with Oliver so ill. It was a situation that was so unreal and such an emotional roller coaster. As Oliver’s condition was genetic (XLP), there was a 50 per cent chance Toby would have it too. If he did, he would also need a bone marrow transplant. After a blood test from Toby and a few nervous days wait we were told that Toby’s tests were clear. We literally jumped off the sofa in excitement as this was a big weight off our shoulders.
No-one expects to have to say goodbye to their child and no-one should ever have to. That is why we are now turning our grief into something positive by supporting the HistioUK which funds ground-breaking research into the condition which took Oliver’s life. Nothing we do will bring Oliver back or change how much we miss him, but hopefully by supporting the charity we can make a difference to other people facing this illness
Oliver was a typical toddler who loved Thomas the Tank Engine, digging in the garden and looking for mischief. Every day without him is hard. In the first few weeks it felt like he would be coming back and even after a year it sometimes still does.
Since Oliver died, our family and friends have already raised some money for the HistioUK. What HLH patients need most is more understanding of their condition and a more effective cure, so the best thing we can do is raise money to help the trust achieve that.
The nurses who looked after Oliver were amazing and we would never have got through this without them so our sincere thanks goes out to them at CICU and Dr Johannes Visser. We are also thankful for the support from the Reverend Bob Mackrill and funeral director Andrew Woodhouse.
And last by no means least our brilliant friends and family who have been there every step of the way to help and support us in anyway that they can. They have been there to listen to us and always offering a shoulder to cry on when we have needed it. Thank you to each and everyone of you, Oliver would be truly proud of you looking after his mummy, daddy and his little brother Toby.............
HLH the impact on our family by Andrea & Paul Scholes.
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