Wednesday, 25 November 2009

Ted's story!

I have just put Ted's story on a group I belong to, for parents with seriously ill children, so I thought I would share it with you all too!

Ted's diagnosis is infantile acute lymphoblastic leukaemia.

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. It was all just white.

During this time I took Ted to the GP every other day just about. He kept telling me I was far too worried about him and really he just 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 I 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 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 begged them to test him for leukaemia, and they 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 DH (who was just as anxious as me) 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. When the nurse took his bloods she said the result would take a week, and I knew in my heart he didn't have a week to live.

Within 2 hours they rang and asked us to go back as something had turned up, and from that minute on my world, and that of my older kids fell apart. I was uncontrollably sobbing, I was desperate because I knew he had cancer. They didn't have to tell me.

I remember my dad telling 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, had his first surgery and chemo had started. 90% of his blood was cancer and he had the disease for an estimated 2 months. About the length of time I 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 said how long he had been ill they wouldn't help him. I told them it was 3 weeks.

He has been an in patient 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%. I was 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, because I feel I have missed out on so much of my other kids. Ollie was only 2 at the time, and she started school in September.

Ethan is very anxious about Ted dying. They have befriended a lot of children at Great Ormond Street and sadly, lots of them have died.
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.

Ollie has found it hard not having mummy around but hasn't taken on board the implications of Ted's illness.

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 septacaemia.

He has had about 5-6 months infection free now, and he has really come on development wise. He has grown, started talking, eating and drinking (which he never did he was NG fed) playing, learning his colours.

He loves being a little boy and now he has had a taste of freedom he would find going in as an inpatient really tough.

He goes once a month for an infusion of immunoglobulins, he has chemo at home everyday and will for the next 5 months, 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.


  1. Oh Sarah, that must have been so difficult to relive. I still remember when you first got Ted's diagnosis, and how heartbroken we all were for you all, and how my heart skips a beat every time Ted has a little setback. You and your family have remained so strong throughout all of this, it really is a wonder how you keep things together. You truly are an inspiration!
    I hope Ted continues to improve each day, and that one day this will be just a sad story you tell him when he is older.
    Your children are each beautiful and wonderful. I'm sure you are very proud of them, as you should be.

  2. Sarah, what an amazing boy. But then I think he may have got that from his parents.
    I agree with Faerie, one day you'll show him pictures and tell him this story and it will almost be hard to believe just how poorly he was. x

  3. I just want to give you all the biggest hug, I've said this before Sarah you are an inspiration, and Ted is lucky to be blessed with such a lovely mummy XXX

  4. lovely little ted is doing well (i am a ukp member)
    when will gps listen to a mothers instinct?

  5. My thoughts and prayers will be with you every day x