The Tube

Joshua calls this his pipe. He shouts: “my pipe! my pipe!” if it gets caught on a button or dangles out of his shirt. He’s had this up his nose everyday now for 8 months. It’s become such a part of our life, having this unruly tube swinging around his neck constantly.

Unwell adults don’t usually have nasogastric tubes, because they are capable of swallowing medicine and not gobbing it in your face. Joshua has oral drugs every day; this tube enables us to bypass his mouth and administer them, whether he wants to or not. Getting it installed was the key to us being able to leave hospital after the first few weeks and be independent at home.

Unfortunately, Joshua wasn’t exactly on board with this idea.

His first tube was inserted whilst he was under general anaesthetic. He woke up snorting and pulled it out after about thirty seconds. So for the first week we just muddled along with trying to get the meds into his mouth.

Joshua concluded that he wasn’t terribly keen on taking medicine, so he would clench his teeth together to prevent us sticking the syringe into his trap. He quickly mastered tantruming with his teeth clamped shut.

Eventually though, he couldn’t contain the protesting screams and would open up his mouth. The syringe would be waiting, poised for this fleeting moment, ready to squirt the drug in. The nurses taught me to press his cheeks together to try and prevent him spitting it out. This stressful process could sometimes take half an hour with some of it dripping off my top. Some drugs are not critical, but when it’s steroids, we need to know he’s had the correct dose.

And chemotherapy drugs are toxic, we can’t have that splattering our skin. (But it’s ok to put it in my child’s mouth. Still can’t get my head around this)..

My heart was sinking because I knew the nurses would have to insert a tube. And do it with him awake, so he knows what’s happening; which might help him to accept it. But having it put in is a pretty unpleasant procedure.

I mean, would you want a pipe stuffed in your nose, down your throat and into your stomach?

After the event, we had to hold his arms down for hours, whilst he cried, thrashed about and eventually fell asleep. We put mittens on his hands to help stop him getting hold of it. When he woke up, it was like we had broken his spirit. He looked away; just quiet and disengaged.

There was some trouble with it being the incorrect length. It was obviously irritating him, so that required adjustment. To cheer him up we had a short break from hospital and wandered to WHSmiths to scavenge some new Wallace & Gromit DVDs, having exhausted the ones at the unit. Unexpectedly he was sick, whilst in his buggy. Ben saw this unfolding, dealt with it and then had to dash off to locate the shopping centre toilets. I was just stood there in Smiths, gawking. So don’t come to me in a crisis.

I mention this incident, firstly because it shocked me at the time, and secondly because the tube came out with it.

He then had to go through the tube-fitting-trauma all over again.

After a few days, Joshua got used to it, but was continuously pulling an odd face with his lips and talking with a strange ssshing sound. Now it’s just part of the apparatus of life. He still protests a bit when cold water goes down it.

But, he accepts it. When I see him now, a little 2yr old child… diligently tucking his tube back into his top… I have a little gulp of sorrow.  He has so much to accept.

Hair

Joshua had bright, flaxen curly locks. His wild, white hair was often one of the first things to be commented on by people. I really loved it. Probably should have trimmed it a bit more than I did, but who cares when you’re 2.

In western culture, lustrous locks are symbolic of health, wellbeing and a quick way to identify someone. Blonde Ruth has been my moniker since the 90s. (I’m not actually blonde anymore. But that’s beside the point, ok?)

Losing your hair, represents a loss of that health and loss of identity. (My thoughts are just straying to the army, and prisoner camps; two places where shaven heads is a bit of a thing…)

Despite everything that was about to happen to Joshua, knowing that his hair would fall out, made me very sad. It’s part of him, part of his personality. It vanishing is a visual reminder of all being so very not well. I did keep arguing with myself. It’s only hair. It will grow back.

When we first arrived at hospital in the dark night; I caught glimpses of other children in their rooms on the ward. Pale, lying in beds, with wispy bald heads. To me at that time, through the glass in the gloomy light, they appeared like haunted, tragic figures. In stunned shock, I couldn’t quite believe that we belonged there. That this was our life now.

During our first few weeks on the unit, I would gently snip out a few of his curls from the back. I felt strangely reluctant, which is odd given that they were due to slowly fall out anyway. I felt like I had cut off loads of them, but now I realise that I hadn’t. It’s a strange unwillingness to be complicit in his impending baldness.

His hair falling out was quite a protracted process; it wasn’t here one day and then gone the next. In December last year, he spent a lot of time sat on my lap; I kept finding lots of strands of hair stuck to my jumper, getting in my mouth or wafting across the kitchen table.

He had scraps of hair for a while. And then he went through treatment intensification, which wiped it all out.

Before Covid arrived, we would be out together in the park or on the school run. And I became very aware that people notice the bald child. The eyes flicker; the pitying glances that last a bit too long. They know something of your situation because of how he looks. I didn’t like that. I didn’t like that he was so obviously sick. The tragic figure.

It’s growing back now. It’s a few millimetres long and I find my hand stroking it when he’s flopped across my lap; it’s silky soft. Like moleskin.

I have no idea what it will look like. Whether it will be blonde. Or curly.

But with its re-growth is a sparkly sense of renewal and quiet relief. It feels like something positive. A return to normal, even if that normal is really still years away.

Last June

What a difference a year makes.

Last June, we had recently moved in to our new house. The family home; the one for the kids to grow up in, the one we hoped to be in until we are wrinkly and rattling around. The boys were enjoying exploring the extra space. I was content seeing trees swaying out of the windows and watching the robins and wrens. Our bedroom faces tall London planes and when it’s inclement weather, their bowed branches rustle and howl in the wind; it’s a bit like camping, but with a more comfortable mattress.

When you step out of the front door, blue tits are twittering about, flitting from the cherry tree to the Scots pine in the park. Coming from a practically bird-free-zone in our last house, it felt like we had come to live in an aviary.

The hum-drum of normal life pottering along, felt quietly full of possibility. Of positivity.

What a difference a year can make.

Infection (III)

When we think about a child having cancer, we focus our thoughts on the disease being the bad bit… and isn’t it a good thing that they can access potentially life-saving treatment. But during this process, what you are often relentlessly managing, is the (sometimes quite serious) complications of actually receiving the treatment.

The third part of this saga is that Joshua has regularly had high temperatures, which is probably due to an infected port. But either way, a temperature of 38 degrees, means that we immediately go trotting off to A&E and will then be in hospital for a minimum of 48hrs.

As soon as possible, he’s rigged up to IV antibiotics, despite it not always being clear what the cause of his infection is. This is because even if it is a virus, he is at risk of complications, like secondary bacterial infections (pneumonia).

We have now surpassed the hat trick of all school holidays spent in hospital – Christmas, Easter, February half-term, and recently the May half-term. (But we had such plans for our lounge-based activities!)

In February alone, we had 3 admissions in what was supposed to be an easier few months of treatment.

Strangely, he is mostly not that unwell in himself with no outward sign of illness (snotty nose, cough etc..) The nurses will take blood samples, which get cultured in a lab and these consistently reveal the presence of a bacteria. When they know it’s staphylococcus, they can then tailor which antibiotics to give.

After much musing (because it keeps happening repeatedly) the consultants have concluded that somewhere inside the port it is probably a bit gummed up with the presence of bacteria that when you are not really ill, your body can tolerate. When he gets neutropenic (*where he has low levels of white blood cells, which makes him very vulnerable to infection*) the presence of this bacteria can cause systemic infection in his body. Hence the spike in temperature. I’m sure our consultant would raise her eyebrows at my simplistic scientific overview of all this, but it’s the best I can do without making it confusing!

The consequence of all this is relentless stays in hospital, which is bad at the best of times. And it is not the best of times in Covid-saturated-Britain.

The long-term solution is to have the port removed in surgery, and a new one put in at a later date. The short-term solution, is to do line-locks. This is where they send him home, but leave a small dose of antibiotic sitting in the port (instead of flushing it clear with saline). This means that once we’ve returned home, the CLIC-Sargent nurse will come out to us every day for two weeks, to refresh the antibiotic.

As you can imagine, Joshua is overjoyed about this; when Jaydene arrives, he screams in her face, shouts “oh no.. not you” and runs off…

Port Problems (II)

(*I debated with myself about including this image because Joshua looks in distress and Ben is gently restraining him. We have done this procedure countless times and this is the only image I have of it. I took it to record our life. I’ve decided to keep it in, because it’s real and this is what happens regularly.)

When ports work, they are great; instant delivery of medication. When they don’t, it causes a lot of head-scratching, investigations and more time hanging around in hospital.

Joshua’s port has unfortunately been relentlessly troublesome.

For reasons I’m not that clear on (maybe his weight fluctuating?) accessing it is often a problem. Accessing is where the nurse sticks a needle into his chest, sucks on the syringe which gets it to easily bleed back into the attached tube. This indicates that it works correctly.

I’m probably making this sound a lot more complicated than it actually is.

It’s 4am. Joshua has a temperature of 39, is angry and also tired because it is the middle of the bleddy night. I’m not overjoyed about it either. We’ve been sat in a side room in A&E for… ummm… a while. He’s been checked over by the nurses and now they want to access his port to administer antibiotics. I quietly enquire about whether they are used to doing this. Maybe we could ask an oncology nurse to come down? Because I know his can be tricky.

Lots of smiling and confidence. “Oh no no, it’ll be fine.”

Three attempts later, flush-faced and flustered they divert to a cannula in the hand instead. I’m grateful for that because Joshua is now in an elevated state of distress.

Cannulas aren’t a good option for more than a day. At Christmas, when we were in for a week, the cannula would fail eventually and get changed over to the other hand.. then his elbow… and possibly a foot as well. In the middle of the night. When he’s asleep.

Two year olds just don’t like being stabbed with needles. Can you imagine waking up to that drama when you’re a child who doesn’t give two shits about why we need to do this?

Eventually on Boxing day, with different senior nurses coming in and trying their luck, Joshua was wheeled off to have his chest x-rayed to see if that would reveal the problem. It did demonstrate that the needle wasn’t in properly. But it has still continued to be tricky, even though they’ve solved that bit.

I guess some things will remain mysterious. And annoying.

What is a Port? (I)

This device is an essential component of Joshua’s treatment. It was inserted into his chest under general anaesthetic on day 2 of being in hospital, back in November 2019.

Children who are regularly given A LOT of medication (such as antibiotics and chemotherapy) and need blood tests relentlessly, have one fitted. This port gives instant access to a large vein. It is under the skin, you can’t see it and it can remain there for years.

This is supposed to make life easy. But Joshua is 2, and nothing is apparently easy.

Above his nipple is a small metal chamber. To access it, the nurses stab through Joshua’s skin directly into this chamber. It probably is an unpleasant sharp sting; but the way he reacts, you’d think he was being tortured. He has to be pinned down on my lap (arms and legs flailing) whilst he is screaming and sweating. I have lost count of the times we have had to do this, but I have a silent sigh every time, because he gets so upset.

(In this picture you can see the plastic butterfly clasp that the needle is attached to, all stuck down to his skin with a sticky patch.)

Joshua doesn’t have his port accessed all the time. The needle and catheter hanging off it, only last about a week. And then it has to be changed for a fresh one. When we’re at home, I’m not very relaxed when the needle is attached because he has an extremely cavalier approach to health and safety.

His currently favourite hobby is standing on the arm of the sofa and dive bombing on to cushions. If it gets dislodged, that’s an instant trip to hospital. And bath time is fraught because he likes pretending to swim; you can’t immerse this in water (especially water that you wash your dirty bum in.)

My resting heart rate is lower, when it’s been removed. Ahh and breathe…

Brothers

Help, we are infested with rodents!

Louis has badgered me about a pet rat, for nearly a year. I was finally starting to come around to the idea because if you can’t have a pet when you’re 7, when can you. Plus they only live 2 years, which I was seeing as an upside.

And then came cancer and coronavirus.

A local lady rat-lover had recently rescued a bunch of them from destination python food. I had agreed to take two females, just as the lockdown was starting. That, plus Joshua’s treatment escalating, made me hesitate. But then, no time is a good time at the moment, so we did a socially-distanced handover 2 weeks ago.

I wanted to do something, just for Louis. We have been trying to insulate him from the impact of Joshua’s leukaemia, but it is a bit impossible. Life has dramatically changed. From the things we can do, to the things we talk about. We haven’t been away for 7 months; enriching outdoor fun has stopped. Christmas day morning was quietly just me (trying to make it seem exciting) and Louis. Fortunately we had the magic of Santa’s visit to fill the family vacuum.

Back in November, his life had suddenly become extremely odd. The house had fallen silent. Our chaotic existence with the usual screeching, fighting and laughing just… stopped. His parents weren’t at home. A small army of different people were picking him up from school every day. Every weekend was a sleepover at Auntie Sophie’s.

Eventually, with my throat tightening, I had to explain that Joshua was ill. We read a book together that the hospital had given us, called “My Brother has Cancer”. I think it helped him to understand in simple terms, some of the big things that were happening. And sadly, to my surprise, he nodded and pointed to the sentence where the boy didn’t think his mummy loved him anymore.

Louis is a paternal, gentle big brother. He’s happy to drop his complex play requirements to toddler level because that is apparently better than having to amuse yourself. Before treatment – amongst the punches – they would happily goon about, hiding in the wardrobe and ruining my mattress with “belly-schlops and woly-polies”.

So it’s been hard and bewildering for him, witnessing the various changes to his little brother, who at one stage couldn’t walk and was so crushed by drugs that he didn’t speak either. Louis would exclaim at night-time, with his face in his hands, that “I don’t like his tube. I don’t want him to have the tube; it makes him look weird”.

Six months later, and things are a bit easier now. He’s got used to the tube and it’s nice to see them needing each other again. They’re currently in the garden, arguing over a watering can.

And the rats. They’re a good distraction, and quite cute actually.

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?

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.”

Continue reading “How Are You?”