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Oliver's Story





My son Oliver was born with Down Syndrome in Jan 2012, with no health issues at all, and we loved him to bits. However, January 14th 2014 was a different story and turned our world upside down. We were given the devastating news that Oliver had Acute Lymphoblastic Leukaemia (ALL) and would need to start treatment straight away. I can't begin to tell you the effect those few words had on us, but I can describe it as time standing still while our hearts were being ripped out. I'd always feared cancer and had a 3 month course of CBT therapy for my fear of this disease.

My grandad died of leukaemia, and now I was being told my son had it. My worst phobia had become a reality. I don't know how we got through the first few days. Within the first two weeks in Great Ormond Street, Oliver was so anaemic that he had several blood and platelet transfusions, he had two anaesthetics, a bone marrow aspirate where marrow is removed from his bones to test the severity of the disease, antibiotics, his first port put in, his first chemotherapy and started his first ever gruelling dose of steroids for 5 weeks which changed the way he looked beyond recognition, plus lots of other drugs that I can't even remember.

I don't know how we got through the first few days. Within the first two weeks in Great Ormond Street, Oliver was so anaemic that he had several blood and platelet transfusions, he had two anaesthetics, a bone marrow aspirate where marrow is removed from his bones to test the severity of the disease, antibiotics, his first port put in, his first chemotherapy and started his first ever gruelling dose of steroids for 5 weeks which changed the way he looked beyond recognition, plus lots of other drugs that I can't even remember. And still my gorgeous little boy, who melted the hearts of everyone he met, through his tears of pain, still smiled his beautiful smile.

Our family was in shock and the effects of this had a huge knock on effect for the whole family, emotionally, physically, mentally and spiritually. My partner Tom and I had no family to help and we still had Skye 3, Amber 12 and my elder twin Rhianna at home to think about. I was at the hospital for the first two weeks of Oliver's treatment, then I would go home and Tom would take over. We have lived this way for the past 7 months and it has taken a toll on us physically, emotionally and financially.

Although Oliver has had some time at home, over the last 7 months he has been in hospital for a lot of that time. He has finished the most gruelling two months of delayed intensification treatment, seeing his chest opened four times for a port infection and port not working. I have seen him sobbing his heart out with needles being put in his chest countless times when they were having trouble accessing his port to get blood and administer important drugs. I've seen him sick with chemo, inconsolable on steroids and so bloated on these that he could not even move in his cot. We have seen children of friends we have made at GOSH, die. My good friend Vicky's 2 year old daughter is not going to make it either. I am waiting for that dreadful phone call from her.

We have seen and experienced dark, frightening, sad, heartbreaking, and painful times I would not wish on anyone. We have seen 4 birthdays in hospital, Oliver's, Skyes, Tom's, Amber's and mine. I have seen Skye sobbing because she wants me to come home, clinging onto my leg at the lifts in GOSH. I've had Amber's teacher on the phone with Amber in tears as she feels isolated at school and not understood. I have had my daughter Jade leave work early and rush straight from work to hospital where Ollie has took a turn for the worse. I've had days where all I've had the energy to do is cry in desperation and fear. That has been the last 7 months as a family. Sometimes it's feels more like 7 years.

Oliver is now on a lighter maintenance, but still on oral chemo every day, steroids, chemo in his spine every so often and on antibiotics and antifungal medicines daily, with bloods being taken twice weekly. We as a family are overjoyed our little man has come through this still fighting. I marvel at the strength of him. He is loved everywhere he goes, and it has left us happier but also in a state of exhaustion both physically and financially.

However, because of his Down Syndrome and his immune system being not as strong as a non DS child, he is still at high risk of infection and will be for the next two years until treatment is finished. We are still unable to take him to crowded places and have to choose where we go wisely. We desperately need a break. We have found a charity that will help with accommodation in France for a much needed break, where we will be the only people in the accommodation but we have to organise our transport, passports for 5 of us, spending money and for food during our stay. The last 7 months have depleted us financially and any money we had with a view to a break has been used in the everyday living and having a child in long term stay at hospital.

We are so grateful to everyone who has already come forward to support us in our hour of need and so overwhelmed with the support from Little Eden and Celeb FC and their upcoming football match to raise money for Oliver.

With love, Adele Doherty and Oliver's Family x