Endless Covid-19 House Party

Up until now, I’ve been slowly picking over what has happened in our lives recently, and I’m still about 4 months out of date. But today I’m writing about how things are …today. Because there is a pandemic. A cocking pandemic. As if life wasn’t hard enough already. Jesus. Though in a strange way it’s the most ‘normal’ it has ever been inside our house. Outside of it is this weird, ghostly turmoil.

Ben is off work. He would be a frontline NHS worker dealing with sick Covid patients, which is just untenable in our current situation. He would have to isolate himself from the family somehow (I mean how. Live in the garage?)

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Treatment Plan

“Three years. What? He needs to be treated for THREE years…?” Our consultant nods slowly.

I mean, I’m hugely grateful; unlike 50 years ago, there is effective treatment available. I guess I had just never considered it would last this long. The day Joshua rings the hospital bell that symbolises his path to a drug-free future, will be 23rd January 2023.

Another element to his care that caught me by surprise is that Ben and I would be administering a very large amount of it ourselves at home. Welcome to your new career as a community nurse. Continue reading “Treatment Plan”

Gaining Our Consent

After getting the diagnosis, Rachel (our consultant) sat us down for the chat. My family were busy entertaining Joshua in his room, while we were taken away for half an hour of brutal reality check.

This is where she talks us through all of the drugs that Joshua will be having to take and all of their potential side effects (now and in his future). I honestly can’t remember much of what was said, but I can remember the way it made me feel. After 20 minutes of this onslaught of upsetting information, I just wanted her to stop talking. I don’t want to hear anymore. Ben quietly commented: “this sounds like walking through a minefield”.

Of course, I want them to treat his cancer and make it go away. But there is also the thorny issue of consequences later in life.

I could feel the sadness brimming in my chest. The point of this chat was to gain consent from us, so they could begin his treatment. But if we refused to give it, they would divert to law and get a court order to force us. So essentially, there is no choice. Therefore, I think I’d rather not know all the details, thanks very much.

Official Diagnosis

We had been told that we were facing leukaemia, but there was a question mark over which type. The only way to know conclusively, was for Joshua to have a bone marrow aspiration. This procedure is done under general anaesthetic for little children. They essentially stick a tiny apple corer into the back of his hip. This removes some of the spongy tissue that creates white blood cells. This sample can then be analysed under a microscope.

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The First Trip to A&E

On the Monday morning, I had to actually wake you up at 8am, which has never happened before. You are always up at 6am or earlier. We did the school run and by the time we got home, you were falling asleep in my lap. I was adamant about seeing the GP. They don’t muck about with children under 5; so despite being a busy, inner-city practice, I got an appointment at 2pm.

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Something is Wrong

Everyone usually asks: how did I know you were ill?

The first signs were on our blustery October trip to Cornwall. You did so much screeching and crying that one outburst seemed to seamlessly blend into the next. Ben and I were ploughing through red wine in the evenings to soothe our battered nerves.

But I didn’t pay it much attention given that you were about to turn two that week. Your brother was a master in the art of tantrums at this age, so I just assumed that it was all part of the toddler package. 

Continue reading “Something is Wrong”