Christmas 2020

“Ho ho ho! Jingle Bells.. batman smells, jingle all the way!” The twinkly lights have been removed and Mrs Christmas is trying to put her feet up… but Joshua is still incessantly singing this, right into January.

Last Christmas he was admitted to hospital and I have been rather obsessed with avoiding that this time.

In December 2019, we were feeling relieved that his first block of treatment was over; slight smiles were occurring at the corners of our mouths.  And then at 2am on the 20th December, I woke up because (sleeping next to me) Joshua was very hot and looking distressed. I hurriedly packed our bags, took a taxi to A&E and didn’t get discharged until the 27th.

He was struggling with RSV, a common but quite nasty respiratory virus.

He had an unrelenting temperature of 40 and just lay silently for days, sweating and breathing heavily. At one point his stats looked so bad on paper, that he was inspected by the intensive care nurse. She fortunately decided he didn’t need to be moved to ICU. Just at that point he had requested a few crisps, which reassured me that people who are intensely ill and getting worse, don’t usually fancy nibbling salty snacks.

All four of us had spent the day of Christmas Eve stuck on the ward… then Ben and I split a really-quite-awful-ready-meal between us, before I took Louis home. I still remember this time as one of our worst moments. Waking up on Christmas morning with only half your family, when you should all be together; full of excitement about the broad beardy man’s inverse burglary.

With that memory hanging in my mind, I was determined that somehow this year would be different. Well, as much as I can influence anything at all. There were troublesome medical events occurring, but I’ll talk about that separately.

Ben’s parents live locally and a quiet Christmas with them had been mooted. But with all the national Covid chaos there was hand-wringing, hesitating.. and ohh I don’t knows… maybe a chicken sandwich outside?

Naturally, under these circumstances, it all came down to the wire and a last-minute nasal swab. We got the green flag on the 23rd. Then I panic bought some pheasants, which was all the local butcher had left, just before shutting.

However, despite all the tensions and restrictions, there were some fond festive moments.

Every year, with Ben quietly eye-rolling, we drag an oversized hulk of pine into the lounge. The boys seem to engage with bejewelling it in baubles; clustered together, on just one side.

Joshua and I made a ton of mincemeat with a lot of brandy. You have to enjoy chopping apple into tiny weeny bits. Brandishing a sharp knife is pretty good entertainment though, if you are three years old.

A few days preceding this, Ben made a batch of mince pies from a jar that had been knocking around in the cupboard. I worked out after all the family had eaten one, that it was probably five years old. They smelt funny whilst cooking in the oven. The internet wasn’t helping… “Bitter almonds contain toxic poisoning which can cause accidental death”. I then spent the evening panic watching the children. We all seem to still be here.

I do love Christmas eve. Even in 2020… It’s the anticipation.

With jeans under sequin skirts, I met my friend for 5pm prosecco chat outside, around a re-purposed flaming bbq. Then back home for HOURS of present wrapping. When I’m still up selotaping at midnight, I regret not being an organised person.

Joshua is now at that age where he understands the Christmas mythology and is excited by all of it. The snow! The reindeer! PRESENNNNNNNNNNNNNNNNTS. Louis is nearly eight and very suspicious of the whole Santa story, but is probably suspending his cynicism because he doesn’t want to risk his haul of goodies not appearing.

They were both up before daylight in a frenzy of ripping.

Under a welcome blue sky, we trundled to the grandparents’ house for a sleep-over. This was wildly exciting to two small boys who pretty much haven’t stepped foot in anyone else’s house this year.

Most of the big day, when not gorging on rich food, was spent fighting over who was riding the buzzingly loud, electric motorcycle present. A total bargain from Aldi apparently. In Granny’s house, you can go round and round and round in a circle weaving through the rooms.

This motorcycle is actually a quick response ambulance, and Joshua is a very attentive medic. “I’m here! Do you need help??” A stethoscope is then swiftly whipped out from the pannier (he’s very familiar with how to use one) the patient is given a lot of hands-on time and the diagnosis concluded as: “you have slugs in your chest.”

Hmmmmm… too much inappropriate viewing of Harry Potter perhaps.

Our Christmas gifts this year, were various types of skateboard. Paved footpaths with varying slopes are now our main source of entertainment in the Time of Virus. So that’s where I will be now, in this hinterland of strangeness… Standing on the pavement as the Health & Safety Monitor, in our allotted hour of exercise.

Happy New Year.

Give Blood?

I haven’t been to give blood since about 1999.

I’m rather embarrassed about that. In my defence, after university I kept visiting Africa. Back in the noughties, when you had travelled to such exotic malaria-ridden places, you were required to wait for a year before it was safe to donate. Somehow the years just rolled by.. and then children came along to distract me from my civic responsibility.

I finally went for blood-letting last week.

A blood transfusion was the first thing that happened to Joshua when he arrived at hospital. Leukaemia is a blood cancer and before diagnosis, he was somehow functioning on a ridiculously low number of red cells, which is why he looked incredibly pale and was falling asleep everywhere.

Someone else’s blood put the pink back in his cheeks and gave him energy for bouncing around. In the first six months of treatment, he received four separate transfusions. He also had an infusion of donated platelets, which looked like a bag of orange jelly.

He wouldn’t have made it through chemotherapy, if it wasn’t for the gift of blood. It has played an essential, supportive role in his treatment. There may come a time in the next two years, where he will require another donation.

But it is obviously not just cancer patients who need it.

My sister-in-law Sophie collapsed at home due to a haemorrhage, a few days after the birth of her daughter Evie. She was blue-lighted back into hospital and given pints of blood in theatre. Unfortunately, once you have had a transfer, you are excluded from ever donating. As Sophie says: “this is excruciating; I was so grateful and I want to donate back, because I have a rare blood type. Had I known this before, I would have made more effort to donate, so I could help others.”

But never has donation been more urgent than it is now with the double whammy of the winter flu season and this enduring pandemic.

Unlike in the 1990s, signing up is all online now of course, and actually pretty efficient. I just answered a few basic questions and registered my details. Then it revealed where the multiple local venues are, and I picked a convenient time.

For Sophie and Joshua, someone’s donation has been literally life-saving. The really great bit is, that to be an actual life saver, you don’t need to have superhuman strength, swing off webs or drive the batmobile. All you have to do is lie around for a while and snaffle complementary biscuits (to keep your strength up). Now that’s my kind of wonder-womaning.

Have you signed up to be a sloth superhero..?

www.blood.co.uk

Birthday

Halloween baby is now 3.

This year, despite everything… an emotional, articulate, loud and boisterous boy has emerged.

His birthday marks roughly one year of cancer treatment. Last year, as he picked the smarties off his 2nd birthday cake, he was starting to show signs of becoming ill. Children’s birthdays are always special, but his birthday this year had a particular resonance. It felt important, on many levels.

The ritual marking of your child actually getting older, becomes valuable when not getting older, is a risk.

And after having to put up with so much: sickness, pain and discomfort, learning to walk again, continuous medicalisation… and just generally not experiencing a lot of the fun and adventure you would expect for a buoyant two year old. I wanted him to enjoy it. And for us to celebrate him.

We wanted a grand glittery occasion involving everyone in his life. But Britain’s new (utterly shit) pandemic lifestyle, prevents that. And in the back of my mind was worry about Lockdown 2.0.

I’m not sure why, but Joshua had latched on to the idea of partying a while ago. He has been chattering ceaselessly about “My Party” for months. So it felt good to be able to make that happen, even in a limited way.

In the end, we had a pre-emptive strike a week early, with two little VIPs.

We spent the early part of the Sunday just the four of us; baking chocolate dinosaur cake, dressing the party room with Mexican decorative paper skulls, pumpkins and a massive strobe light. (Pre-Covid we were in a pub band, so this is fortuitously knocking around in the basement).

Three-year-olds are not compliant with organised games, so it was mostly lots of rolling around, wrestling and freestyle Kate-Bush-dancing to very loud music. Funk and Disco tunes, obviously, as I am in charge of the playlist. But Joshua’s favourite track is “Fart”. Bass heavy, thumping drum beats, with squelching, rhythmic squeaky fart sounds and occasional swearing.

Entirely appropriate for small children.

He loves it. What can I do.

Meanwhile I prepared the birthday tea of “sausage and chip”. The only food he will contemplate eating, currently. Whilst dousing the other two mothers in a not-insignificant volume of cheap prosecco and gin.

Parenting went a bit slack after that and there was some trouser-wetting of unattended children jumping off sofas in the lounge. Cries of “I need the toilet” went unnoticed.

There will no doubt be more of that in future, though. I remember unconscious urination being a strong feature of university parties in the 90s.

Joshua now thinks that birthdays actually last a week, because throughout the half-term holiday unexpected guests kept dribbling in for playing, fart dancing and present-opening. Mostly outside in the rain by the end of the week, as I got increasingly worried by the UK’s rising covid-rates.

He had a great time. I had a nice time watching him having a great time. But there was absolutely unfathomable amounts of washing up. Next year I’m hiring staff. Or something.

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.

Holidays

“Right.. ummm… how can we make holidays happen, Ben?” I began asking in late July. Essentially we can’t plan ahead, or leave the UK until summer 2023.

I don’t want to be maudlin. It feels odd to be moaning about vacations under these life-threatening circumstances, but most people consider these to be the high points of life. The time you get together to stop the clock and have fun as a family. To not be able to look ahead through the difficult times and have the prospect of exciting adventures for the boys, is an unfortunate casualty of cancer treatment.

It will always be a last minute thing. If Joshua is ok.

It doesn’t mean we can’t do some nice simple activities, but we can’t invest cash. Or we can, but you will lose that £1000 you’ve paid for a holiday home at the coast, if it turns out you can’t go.

Or the other scenario is… you go away, he gets a temperature. We then have an emergency few days in Trelisk hospital which over-runs the time booked into the holiday home and end up essentially homeless in Cornwall. What then? I can stay in hospital with Joshua, but Ben and Louis. Where do they live until we can travel home?

In this time of Coronavirus, I didn’t fancy camping in the van with communal toilets and sinks.. there were NO pitches available anyway. I therefore scheduled in some things that could be cancelled without consequence. Long-awaited trips to visit friends.

I thought something would come along to trip us up, but luckily it didn’t. Maybe Louis not having been in school for months, cavorting with lots of bugs, set us up well for a period of good health. So after nine months of never leaving our house, we have ventured out and been on a slight south-west road trip.

When it was roasting hot we were in the Malvern hills.. and then moved on to the coast, to breathe in the sea winds.

We have ridden bikes.

Played in big buckets of soapy water. (the children, not me, obviously)

Run in to the sea… run out of the sea… run in to the sea… shouting woahhhhhhh.

Been on short country walks with a lot of toddler-moaning.

Drank a bit of wine. (Ok… I mean quite a lot of wine).

Swung on rope swings.

Baked cakes (guessing the weight of ingredients and mixing it in a saucepan) whilst storms lashed the windows.

Warmed my face in sunshine. Read absolutely no pages of my book. Sigh.

Eaten fabulous home-made pizza.

Holidays can be an exhausting business with little people, especially those enduring treatment. I have paid for this in sleep.

But having a change of scene after so long, has been cleansing; and watching their smiley faces whilst enjoying the simple pleasure of playing in the sea, was precious. I can only remember my time at the beach from when I was a small child. I have no memory of what else I did with life in the other 50 weeks of the year.

When the future is uncertain, we have to grasp the chances that appear. So be warned friends, we’re probably coming to visit.

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.”

Potty Training

In amongst cancer treatment there is that strange thing called normal life that has to fit around it.

Back in the spring, Joshua was beginning to argue about wearing nappies; his legs kicking me during bum-changing, and then ripping the nappy off immediately afterwards. I could see potty training looming in to view, and I love life without nappies. But his treatment was about to get heavy, so it didn’t seem sensible to have poos plopping on to carpets and urine flowing everywhere.

One of the worst stages of potty training is being trapped in the house for the first week while they learn to manage their uncontrollable bodily functions. But we were stuck in the house anyway due to the international pestilence, so by May it was time to abandon trousers.

For anyone that has forgotten about this business, the quickest route to success is to remove everything and go bare-bummed. They can then see the torrents of wee running down their legs and make the connection. Otherwise there will be endless trouser-washing.

[We had worked out in February that Joshua has good bladder control. Back then we were in hospital and the doctors were wondering why he had a temperature. Maybe it was a urine infection: “can you collect a sample of his wee in this pot please?” Errrrrrrrr. How?

After waiting for two hours to catch this, Ben turned his back and Joshua peed all over the mattress. To ensure that we didn’t miss it next time, we had to wait with his pecker in a plastic pot for THREE WHOLE HOURS. And he wasn’t exactly making this easy; standing up, dancing and parading about. My arm was aching and I was utterly losing the will to live from following his giblets around. And then he let rip like a racehorse. Turns out he didn’t have a urine infection.]

Anyway. In May, the weather was dry and sunny, so we could be in the garden with no pants.

On day one, I was outside with Joshua and turned around to see him weeing into a watering can. After the morning’s continual chat about wee, and that it had to be put somewhere, he just seemed to instantly get it. Three months later and there hasn’t really been any potty training.

There isn’t much that’s been easy in our lives right now, so to have problem-free sailing into toilet-use has been unexpectedly pleasant. But also a bit disappointing! I’d been such a slayer of joy around Ben with my faecal forebodings about how awful potty training was.

I went through it alone with Louis. A week at home with incontinence and then another month of “getting there”. Taking four pairs of trousers to toddler groups and then leaving when we had wet through the final set. Sitting on plastic bags in car seats and buggies. Scrubbing up accidents from the cream carpet. The seemingly endless washing of sheets.

Johsua has had so much to cope with, but on this particular issue, he’s embraced the idea positively and got on with it. So I’m actually pretty proud of him for that. Despite dramatically yelling “I need a WEE!” every day at tea-time; just as we’ve all sat down and the first bite of food is about to touch my lips.

And I can’t blame him for thinking yesterday, that jungle poos in the garden are as legitimate as jungle wees…

Treatment Update

*Joshua celebrating (with apple juice, not sherry…) the end of his intensive phase in June.

After nearly nine months (has it been this long?)… it’s not surprising that a few friends are asking how Joshua’s treatment is progressing. In the first few days of November, one of the most relieving statements made by Dr Rachel, was that they were aiming for a cure. But this comes with the stinging caveat… that this isn’t something they can guarantee.

As I’ve described HERE, he is on a well-trodden pathway with a treatment plan that is split into 5 phases. He is male, so has to be treated for three years (unlike girls who have it for two). If they stop earlier than this, there is a risk that the disease will return.

As he is only 2yrs old, Joshua began on regimen A which is the lowest intensity, offered to children under 10. If they can’t eradicate enough leukaemia cells after the first month, children will be moved up to regimen C, which is the highest intensity.

On 12th December 2019, after the most turbulent and upsetting month of our lives, Joshua was carried into the operating theatre to have a minimal residual disease test (MRD). This is where they remove a small sample of his bone marrow from the back of his hip.

A week later we got the result that the number of leukaemia cells left in his body was under their threshold.. *insert some mathematics here from Dr John that I don’t fully understand*. This was good news because it meant that Joshua can remain on regimen A. Consequently, phase 2 in January was three weeks long not nine, with only two drugs.

Anything involving a little boy taking less drugs and less time having them, was a massive relief to me.

Coming into January and February, we should have been having an easier journey at this point, but as I’ve talked about before, we were having problems with seemingly relentless infections, which meant yet more week-long stays in hospital.

And then of course, humanity’s Covid-curveball hit us all in March.

Given how little the world understood the virus at that time, it was incredibly daunting to be plunging Joshua into his intensive phase during the lockdown. This upsurge in treatment is intended to hammer his remaining leukaemia cells with different heavy-duty drugs.

It seemed like the country was being put on a war footing in late March. So it felt weirdly cavalier to be subjecting him to this, but the oncology team reassured us that other countries (ahead of us in the pandemic) had concluded that the risks to immuno-compromised children from Covid, were not great enough to justify delaying essential cancer treatment.

In June, he moved into the last phase: long-term maintenance. Now, there are (presumably) negligible levels of leukaemia cells left, and the continuing treatment is to keep it that way. There is a risk of relapse. But I don’t want to think about that.

He will still have oral chemotherapy every day (and other things). This relatively small dose suppresses his bone marrow enough to stop it making leukaemia cells, but still enables it to make enough normal blood cells. It’s about getting the balance right. They don’t want to give him too much; that will cause him to become vulnerable to infection (and consequently become ill). But he obviously has to have some. We are still finding the right levels for him.

Our nurse visits us at home each week to take blood, which monitors everything. This is the loathed finger prick test, where they squeeze out a few drops of his blood in to a small vial. Poor Jaydene does not get a welcome reaction to her arrival. “OH NO. NOT JAYDENE! WAAAAAAAAAAAAAAAAAAAAAAAAAAAAAA”. Every. Week.

I wish I could rationalise with him that of all the things he’s had to endure, this is actually quite trivial. But that’s 2yr olds…

Overall, it is welcome to have entered this more manageable phase and with lockdown loosening up (rightly or wrongly) our every day life feels easier. He is now zooming around trying to discover new, imaginative ways to injure himself.

Which is good. Kind of..

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 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.