" Then he started complaining his food tasted like metal and he could feel something falling inside him when he laid on his side and one morning he was sick ." He was sent for a blood test and within hours the family were called back urgently to hospital . " We were in room 10 in the children ’ s assessment unit at the Norfolk and Norwich . Four doctors came in and I already knew it was going to be bad . They sat down in front of us and said there is no easy way to say this but Deryn has leukaemia .
Deryn when he was first diagnosed at the age of 10
" I burst into tears . My husband just looked totally shocked . Deryn said , ‘ what ’ s leukaemia ,’ I replied ‘ cancer of the blood ’. From that moment , we were totally honest with Deryn about everything that was happening . Deryn has a mild autism and you have to be very blunt with him - and we felt it was his body he deserved to know .
" I tell people I wasn ’ t a cancer mum once but then within one second in that room I was and always will be . As soon as those words come out of the doctor ’ s mouth your life has changed for ever . For ever ." And Deryn didn ’ t just have leukaemia - he had one of the most aggressive forms with the second highest white blood count the doctors had ever found .
The next day he began brutal chemotherapy and by the second day of the September he was back at school . He ’ d made an extraordinary recovery - although he was still weak and prone to infection and suffered various setbacks over the next 18 months . Deryn was ill for many years and his parents knew he was nearing death
Then in January 2012 he started to complain about his throat hurting . " He said it felt like a crisp stuck in his throat . I said ‘ could this be a secondary cancer ?" Six months later his tonsils were removed and were found to be cancerous .
It took a further four weeks to say what kind of cancer it was because the doctors had never seen it before . There was more chemotherapy and brutal surgery . But it seemed the cancer had come from his bone marrow and without a transplant there was a big chance it would only return again .
Again , Deryn had chemotherapy to blast his own bone marrow before a donor was found in Germany . The family were crushed when the first transplant failed to work . And then a second failed too . Deryn ’ s only hope was to put a small remaining amount of his own bone marrow back in . Again , the first attempt failed . There was just one last bag of bone marrow left - if that didn ’ t work there was no hope for Deryn . He would have no immune system and be unable to fight any infection .
" By day 46 of the transplant the bone marrow still wasn ’ t working ," says Callie . " We ’ d been talking to the staff for days about it and it was agreed that would be the day all his antibiotics and treatment were turned off and we went to the hospice ." His parents knew that withdrawing Deryn ' s antibiotics would kill him ‘ We knew Deryn had only been kept alive by antibiotics by then . With no immune system , as soon as the antibiotics were turned off he would be killed by any infection . I likened it to a life support machine even though he was conscious – we knew once that was switched off that was it . “ I said to the doctor how long are we talking once it ’ s switched off ? He replied : ‘ Three days . A week at most . “ We ’ d had so many years building up to this and although the reality was I am going to lose my son , my first born and it was horrific , just horrific , we got on with it . There was nothing we could do