How is Little Ted?

Ted is asleep so thought I’d finally get round to writing a little update. I didn’t know much about leukaemia prior to Ted having it and it’s perfectly acceptable that most people are the same. We don’t need to be aware of everything in life – a reoccurring theme for me in this blog!

The thing I’ve learnt over the past couple of months is that cancer isn’t actually that bad. Shocking I know. Everything you ever see on TV is like… CANCER = BAD/ DEAD.

I must point out I am talking about childhood leukaemia here, I can’t pass comment on other types of cancer so don’t be offended.

The actual cancer, we’re so advanced in research and treatment that there is a 90% cure rate for childhood leukaemia and for us being in Birmingham, we are probably at one of the best cancer units in the country, possibly the world.

We know how to treat leukaemia. The research over the years has proven very successful and saved lives.

If a kid with cancer could walk in on day one and be treated in isolation for 3 years all would be fine.

 

The bullshit part is that if he gets a standard childhood viral bug, it’s a big deal. If he has the shits, it’s a big deal. If someone doesn’t vaccinate their kid, it’s a big deal.

 

Most cancer patients in Teds age group that die don’t exactly die from cancer, they die from a standard bug that they couldn’t fight off. Technically you could say, but for the cancer they’d survive so they do technically die from cancer… they don’t. If they were isolated through treatment the drugs work. There are advanced cases where the drugs don’t work and stem cell is required but in most cases the chemo works.

Obviously some kids do die from cancer, I’m not dismissing that but most do react well to the treatment – if they didn’t we’d be changing the treatment.

So as most people know, Ted was diagnosed and had 100% leukaemia cells and then shot right down to 6% two weeks later and 0% five weeks after diagnosis, hence why I say the drugs work!

He is is low risk now and in remission and I think a lot of people mistake remission for recovery. Remission means the cells have gone but we’re on high alert. I love a pub manager analogy so I’ll describe it as, if there was a robbery at the pub next door within a few minutes yes technically the robbers have gone and we aren’t stressing about everything but you know head office will send a mass email telling everyone to be vigilant and take extra security measures to minimise the risk of another attack.

 

So we’re keeping an eye out because the robbers may strike again if we know they’ve been at it already

Which is why we’ve spent the past three weekends in hospital because as soon as Ted gets a temperature we have to be on high alert because it could mean that either the leukaemia is back or because he is immunocomprimised by the chemotherapy he won’t be able to fight off bugs. So a lot of people hear remission and think yay! Of course it’s good but it’s not over.  Not even close.  We have at least 3 years of treatment ahead and no doubt many more trips to A&E.

We are literally VIP in A&E. Having spent many, many hours waiting in A&E with Ollie at various points, I wait 10 mins max with Ted and we’re in our own room and doctors have seen us and prescribed antibiotic. We even have a little VIP card we just show that and we’re in.

It is bullshit and our lives are just unpredictable every single second but we need to get through this patch so that Ted can keep dancing!

  • Bob Sangwell

    Brilliant analogy as usual, Jo! We’re so proud of you all, for the way you are dealing with this. You’ll notice I didn’t say ‘coping’, as you are so much more proactive than that word suggests xxx