New Port (V)

After Christmas, and 5 weeks with Joshua not having a port in his chest, he was scheduled to have a new one put back in at the end of January. Given that it’s been a source of problem (despite it being a core part of the solution) Ben and I did chat about whether he should have one at all.

He only currently needs intravenous treatment once a month. But it is once a month for years. If he gets ill and needs antibiotics, then he will need it for that, too.

The alternative is to put a cannula in his hand. But children have small veins and pudgy hands; they are tricky to insert. Plus it is uncomfortable and there is terrific resistance from the child. He did manage to rip one out once and there was a dramatic blood spurt over the bedsheets…

They are also not very reliable. They fail easily – the medication stops flowing in, if they bend their wrist. I have had a few sleeps in hospital excessively disrupted with the machine beeping “Occlusion! Occlusion!” every five minutes.

When Joshua was in hospital over Christmas 2019, he had 4 different cannulas in a week – in both hands, crook of the arm, feet. Putting in new cannulas at 2am is utterly undesirable. The goal at night is to keep the child asleep, not dramatically wake them up.

In our chat it quickly became obvious that he does need one.

So I took him in for that operation and had the usual pre-operative chat with the surgeon beforehand. I mentioned that Ben remembered when the original one was put in, that Joshua had a small-sized chamber inserted and that maybe it could be a bigger one now?

There was lots of “oh no no no, it would definitely have been the size 6 for his age. Size 8 is for the over 10yrs. Oh no definitely. He would have had the size 6.”

Then his young registrar shuffled in with Joshua’s medical notes, and pointed to the fact that actually, Joshua had a 4.5 which is the neonatal size.

Oh.

(It wasn’t put in by this surgeon, by the way.)

So now I’m wondering whether a lot of our problems with his port actually stem from the fact that it was quite a small chamber. When the nurses are trying to stab it with the needle several times and missing it (at times he was quite chubby due to the drugs) that this could have been a source of it getting infected.

If this is the case; I’m hoping for better outcomes now, with its future use.

Ben’s colleague Richard was the anaesthetist; it was nice to see a friendly face. Because Joshua doesn’t have a port, they had to prep his hands for a cannula, so they can give him a general anaesthetic. This is just putting some numbing cream on the back of the hands for half an hour in advance, which is then covered up with bandages to stop him ripping it all off.

Joshua is quite a dramatic character and this was not going down well.

He was desperate to rip off the bandages, and so I was holding his hands apart. He was stood on my lap screaming in my face, and then headbutted me hard on the lip.

“Ooh he’s spirited, isn’t he..” says Richard.

How Can I Help?

(Quiet early mornings in our local park before anyone else gets there..)

How Can I Help?

Your child getting a cancer diagnosis is one of the most frightening journeys a parent can go on. Alongside this, it is a constant juggling act of school pick-ups and who is going to be in hospital, whilst trying to shoe-horn the basics of life in to keep a family running. We have really leant on some of our family and friends (particularly local ones) which has been invaluable. I have now heard a few people say: I really wanted to help, but I didn’t know how. So I have had a think and come up with a few ideas, that may be of use to someone.

What Can I Say?

When witnessing something as shocking and overwhelming as childhood cancer, some people clam up. Friends who have been part of your life for years, become strangely absent. It probably comes from a good place, but “I didn’t want to bother them” translates into hollow silence.

If you have a friend going through difficult times, acknowledge their situation and just be in touch. Even if you don’t know what to say; something fumbled but heartfelt is better than nothing at all. I find you can’t go far wrong with “I’m so sorry this is happening”.

In the whirlwind chaos of the first month, I most appreciated messages that didn’t require a reply. I fancy we should return to the slower-paced 1990s and send letters in the post. Unlike a text message, no-one expects a reply to their card. But if you haven’t got time for being a lady of letters, a “thinking of you today” message will do just fine.

Bring Food

The fact of life is that we all need to eat and somehow nourish the picky children. A leukaemia diagnosis begins with a few weeks in hospital, and then shifts to intermittent periods of hospitalisation, whilst also being treated at home. Achieving the shopping, chopping, cooking and clearing up afterwards, under these circumstances, can be exhausting and stressful.

Offering food is a simple way of removing an everyday problem.

Parents don’t get fed in hospital, only the patient. So at times I find myself living off Joshua’s rejected toast at breakfast and a few leftover chips at tea-time. Or just not eating at all.

Except for when we were living on the ward for the first few weeks; one friend kept emptying out meals she had made, from her freezer. Chipping bits off her defrosting Thai curry kept me going for a few nights. Another Wonder Woman brought in boiling hot fresh-from-the-oven lasagnes to our room. I will never forget this.

As the weeks turned to months, friends left meals on our doorstep. One lass didn’t tell me that she’d done that and I nearly stuck my foot in her glass bowl of chilli when I went out.

Visit

It’s a very long day with not much to do in an isolated hospital room; especially as the sleep from the previous night is likely to have been disturbed. When you have a poorly young child, even having a shower is tricky, because you can’t leave them alone. If it is possible, ask: “can I come and sit with you in hospital?”

They will be very glad to see a friendly face, equipped with an activity book that can break up the relentless televisual entertainment.

[*Clearly this isn’t feasible under current Covid-conditions, but when that has hopefully changed next year…*]

My friend (who worked in the same hospital) would always bring me a coffee before her shift started. Which was a very welcome start to a tiring day. One Friday evening, Ben’s mate brought him a curry and a surreptitious beer. They ate together and he kept Ben company. When you would have been sat alone in the dark with only the gloom of the TV for company, these gestures mean so much.

Families in this predicament often have other children; I can’t even count the amount of times Louis has been picked up from school by other parents and occupied at their house, whilst we were delayed in hospital. So, plugging the gaps of childcare for other siblings is a significant part of assistance.

The Long Haul Ahead

In the first few weeks of treatment, I could have employed a PA to cope with the volume of enquiries and found it stressful to keep up with the demand for answers. At times, I felt like lobbing my continually-beeping phone out of the window. (Helpfully, the windows don’t open on the oncology ward). There were moments where I couldn’t even face updating my mother on the latest rapidly-changing developments.

This is where little messages of support (which didn’t need me to respond) were most appreciated.

But then, as the months roll by.. everyone quietly moves on. The friends and family drop away; you really don’t have the energy for reaching out, and it becomes a long, lonely road.

All the usual things from life with a young family, have been stripped away. Often one parent has given up work to care for their child, or (as in my case) the loose career choices they were making now their child was meant to be getting less dependent, have had to be shelved.

There are no activities. All the fun things I did with Louis – gardening group (relentlessly watering plants and looking for elusive newts) soft play, gym club, endless sunny afternoons in the park packed with carefree children. All that has gone.

It’s a very quiet existence.

Our situation is not as acute as it was, but there is still chemotherapy rumbling along, visits from nurses, the threat of getting ill and requiring hospital… The stress and worry is still there, like the low hum of an engine; never silenced. We need our community now, just as much as we have ever done.

Down Days

“I’m sad mummy” he says whilst curling into my arms. This has been the much-repeated soundbite of my day today.

Now Joshua is in his long-term maintenance phase, once a month he has to take a five day course of the potent steroid – dexamethasone. This psychotic mood-altering drug induces depression and anxiety.

It becomes progressively harder to get him interested in things he usually loves.

I see my little child change. He sinks from bouncy and adventurous into clingy and miserable. Even his face changes; his eyes become dark and hollow and there are no smiles. He just wants to lie down on my lap and will scream at the slightest mishap.

What can I say to him when he asks plaintively: “how can you make me better?” My only solution is to offer endless cuddles and we have a lot of time slouched on the sofa.

There is a time lag with this drug hanging around in his system; so his normal, buoyant personality doesn’t appear again immediately.

I worry about the future mental health of a child who is regularly being forced into a pit of despair.

I still can’t quite believe he will have to tolerate this drug for years. Every month. It’s a tough week for all of us. I feel like I’m staring at a long road up a craggy mountain path. I keep thinking: “how will we trudge through this?” And then I answer my own question to the universe: “well, we just will.”