Kate's Blog

Follow me if you will as I try to navigate through the ups and downs of my world.

I'm writing this blog to help me make sense of all that has happened - from my diagnosis with non-Hodgkins lymphoma while pregnant with my third child in May 2008
, through to my reflections on chaotic family life as I try to pick up the pieces of my life again.


The kids are so small, and I'm working hard to keep us all safe and to stay in remission.

Stay with me - it won't be all doom and gloom I promise!



Thursday, 8 October 2009

Lovely Boy

I haven't mentioned that our son has haemophilia.

It's a condition which means his blood doesn't clot - he has severe haemophilia so this means he has less than 1% of the clotting factor which most of us have. It's a genetic condition, my dad had it, so I knew that when I was pregnant with my babies - if they were boys - that they would have a 1 in 2 chance of having haemophilia. It's the same probability that my girls are carriers.

All this is kind of serious but also manageable. Ed flies about doing all the things 5 year old boys do with no sense of restraint at all. He can get very painful bleeds into joints and muscles, has horrible looking bruises much of the time and if he bangs his head hard it can be very serious indeed. However, when he does get these injuries there is a now a very effective treatment - thank heavens! When my father was growing up he had no treatment at all and spent large parts of his childhood in bed.

Ed has an IV injection of the missing clotting factor which works well and quickly. Up to recently whenever he has needed treatment I have taken him to our local haemophilia centre and they have given it to him. Recently, however, as Ed has started his second year at school he has started a prophylactic treatment once a week to try to protect him a little in the subsequent days. The factor stays in his system for sometime in diminishing amounts as the days progress. And I am learning to inject him so that eventually I can treat him at home rather than trekking through rush-hour traffic along with the other two kids after school. It also means that staying away from home and going on holiday will also be less stressful.

But, injecting your own child is a strange and tricky business!! I practiced on the endlessly kind and patient nurses initially. Finding a vein and figuring out which direction it travels under the skin seems an art as much as a science. And last week and this week I managed to treat Ed. He's so patient with me. He holds still while I clumsily poke around - and reassures me, tells me I'm just learning, tells me it's ok! I'm stressed before we go (hope I hide that from Ed!) and very proud of myself when I'm successful.

When he was a toddler and needed treatment it was such, such hard work to stay calm. He struggled and sweated and fought and it sometimes took the nurses literally hours to treat him. I'd feel as if I was colluding with them against him as I tried to hold his struggling body still - and he didn't understand and I couldn't explain to him. Today he holds out his arm and bossily reminds me to put the torniquet over his sleeve because it pinches and to clean his arm 'properly'. I am very proud of his open and sunny attitude towards his condition. He is utterly pragmatic about it and this helps us to be pragmatic as well. Amazing.

6 comments:

Meghan said...

what a good boy. my 4 year old is ok with shots...surprising as i am not:)

MichaƩle said...

Oh what a wonderfully patient mom you are! My youngest faints at the sight of needles...I can't imagine if we were in your situation and I had to give her shots. I would have to call in the National Guard to help me!

hannah said...

what a clever boy and a clever mum! How amazing and reassuring that he has learnt to live with it so well at the tender age of 5 - a lot for such a little boy to deal with, and you too! x

f8hasit said...

Wow.
I'm going through your posts and can't quite put myself in your shoes. YOU are quite wonderful and brave. Andin comparison, well, I'm not.

Little ones amaze me with their insight that we don't give them credit for. My own 10 year old today blew me away.
It's been raining here for 2 days straight. We needed the rain, but after a period of time...you just crave a little sun! With the fires raging in California, I said, "boy I bet they wish they had this rain." To which she replied "yeah, but then with all the fire having burned the trees and brush,the rain would just cause landslides which could possibly kill more people than the fires."

Uh. 10.
Wow.

Thanks for stopping by my blog. I can't wait to catch up more on yours!
:-)

Margaret said...

Oh Kate. I didn't know you had to deal with this. It so hard to see your little one's suffer, and you feel so helpless. I'm so glad there are effective treatments these days, but I'm sorry you have to give him the shots at all. Still, the result is worth is, and if this teaches your boy a sense of compassion that he might not otherwise attain, at least that's a good thing. I only say that because my daughter who has epilepsy is the most compassionate one I know, and I'm sure her won challenges have made her a better, stronger person.

Kate said...

Thanks again for all your comments - Ed really helps to make things ok though. Margaret - so sorry about your daughter too, that must be really scary.
F8hasit - thanks for stopping by on MY blog too - yes, kids are amazing!!