Roid Rage

I’ve often muttered to myself in the midst of difficult moments, that looking after a toddler with cancer is essentially parenting on steroids. And then seconds later realised that he is actually on steroids.

The funny thing is, it appears that medics don’t fully understand how they actually work, but they do improve outcomes for cancer patients.

In the first few months of treatment, Joshua was on steroids for 5 weeks. The doctors warned us about the main side effect, which is increased appetite. That doesn’t sound that bad does it? I was listening to the warning, but it’s just words. You don’t understand what that really means, until you are actually living it.

John (our consultant) said: “if Joshua asks for a roast dinner at 2am, just make one. It’s an argument you won’t win”.

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Hospital Admission

I spoke too soon. After commenting about our ‘normal’ phase, we’ve just had almost a week in hospital. *massive sigh….*

So if anyone is feeling trapped at home during this isolation, I recommend a few days stuck in one room with a window that you can’t open. Being back in our house now feels quite luxurious. I can make pots of coffee (whenever I want one!) and cook vegetables that don’t become squishy, tasteless mush. Wow.

I knew it was coming. Joshua’s treatment has stepped up (phase 4, see here). It’s the second wave of heavy-duty-drugs to stamp out the remaining leukaemia cells. The consequence of this intense chemotherapy makes him very vulnerable to infection.

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How Are You?

(*Just putting this in context now. I wrote this post back in the spring, when times were harder and I was getting a lot of How Are You texts every day…)

I get asked this a lot at the moment, by lovely friends, who I miss. I’m so grateful that you care enough to check in and enquire. I would be asking that too; it’s the obvious question. But it’s a pretty difficult question to answer in a text message. How can I casually mention in 140 characters that Joshua was sick all over the breakfast table. Or that he was over-dosed in hospital and I felt paralysed as a parent. There are multiple difficulties going on, it’s hard for me to reply. So I either don’t answer the message (which causes worry) or I’m forced to say: “we’re ok.”

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Endless Covid House Party

Oh great, we are now living in 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 has stopped work at the NHS. He would be 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”

Side Effects

After getting the diagnosis, Dr Rachel 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. 

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