It was very frustrating getting a diagnosis for Ted as he was so young when he first started developing the symptoms.
He started off with a chest infection at the Christmas time, and from then on seemed to get quite sickly, and have ear infection after ear infection. He was never without one.
He started to get very pale, and of a night time especially would start screaming. He was 5 months old at the time.
He was already cruising but very quickly started to fall and hit his head a lot, then he stopped crawling and eventually he couldn’t even sit up. He just lay motionless on the floor.
He had lumps on his head and neck, and his skin became completely opaque. He had no defining colour in his lips tongue or ears, they were all just white. He also had black bruises all round his lower legs.
During this time we took Ted to the GP many times, but he kept telling us we were far to worried about him and he only had an ear infection.
I remember telling family how relieved I was it was just that, but deep down I knew he was dying. The screaming would last all night, and if we tried to pick him up to comfort him he would scream more.
I feel guilty now but I began to resent having a 3rd child, because the doctors were telling me he was naughty, and that I was neurotic. One GP told me to lock him in a room and ignore him! When I told him I couldn’t do that, he slammed his fist on the desk and told me I would be a slave to him for 40 years or more!!
I asked his GP to test him for leukaemia, and he said no!
People would stop me in the street to say hello to him, and I would be screaming inside “please tell me he looks ill” Why could nobody else see it!!
I asked John (who was just as anxious as myself) to take a day off work and we went to see a locum GP. She agreed he was pale, his liver and spleen were enlarged and his heart rate was extremely fast. She indicated he was anaemic, and I knew then he had leukaemia.
He was a fully breastfed child by a healthy mother, he shouldn’t be anaemic.
She sent him for a blood test at the hospital and when the nurse took his bloods she said the result would take a week, but I felt in my heart he didn’t have a week to live.
A few hours later the hospital rang and asked us to go back as something had turned up in Ted’s blood, and from that minute on our world, and that of our older children fell apart. I was uncontrollably sobbing. I was desperate because I knew he had cancer, they didn’t have to tell me.
My dad told me to calm down as my then 8year old needed me to reassure him. I couldn’t do it, because I needed someone to reassure me.
Within 24 hours he was in Great Ormond Street, he had his first surgery and chemo had started. 90% of his blood was cancer and he’d had the disease for an estimated 2 months. About the length of time we had been taking him to the GP.
I remember lying to them at GOSH about how long he had been ill because I was afraid if I told them how long it had really been then they wouldn’t help him. I told them it was 3 weeks.
He was an inpatient between GOSH and our local hospital for about 19 months.
Initially we were given a survival rate of 90% but because of his type of leukaemia it dropped to 50%. We were distraught.
He has had every infection known to man, which has contributed to his lengthy stays in hospital. It has been a huge strain on us all, and we feel we have missed out on so much of our other children. Ollie was only 2 at the time, and she started school last September.
Ethan is very anxious about Ted dying. The day of diagnosis Ethan drew a picture of the earth, inside which he wrote mum dad Ethan and Ollie and outside the earth he drew a star and wrote Ted’s name in it.
He asked his Grandma, would Ted die that day or would it be the next week. He started pulling his hair out quite severely, until he was completely bald at the front.
So the devastating effects of cancer have not only touched Ted’s life in a negative way, but also those of his siblings.
It has been very distressing as a parent because you have NO control over the disease, or infections. We have come close to losing him a few times now, and he has had a stay in PICU at GOSH as he developed septicaemia.
He still goes to hospital once a month for an infusion of immunoglobulins, he has chemo at home each day and will for another month, and the nurse comes to our home once a week to take bloods to check he doesn’t need a transfusion, and that the disease hasn’t come back. He currently has badly infected feet, which causes him a lot of pain as they bleed whenever he walks and he also has sores and a rash over the majority of his body cause by the chemotherapy he takes.
His treatment will end on April 21st, which will be 2 years 1 month and 5 days after diagnosis.