Lockdown, it seems, is an experience of quite disparate highs and lows.

At first we didn’t think life would feel much different for us – as it was we’d basically been self-isolating since July last year as Ben’s low immunity meant we had to avoid crowded places and certain activities. Plus we’re still at the stage where we can count the total of our Edinburgh friends on one hand so curtailing our social life required a rather pitiful lack of effort. It actually felt quite nice for a while that the rest of the world was joining us in our confinement – some solidarity. I’m sure you’re all delighted too!

New opportunities opened up to engage in things from a distance. We have absolutely loved, for example, being able to join in with the online Friday church meeting of the team in Puerto Morelos, Mexico, something that wouldn’t have happened before the coronavirus crisis. What a privilege! Through that we feel we’re making progress on getting closer to Mexico even though our engines are currently doubly grounded.

New online options for all kinds of things have suddenly abounded too, and that has helped us feel more connected and resourced than previously – plus at last FOMO (the Fear Of Missing Out) has taken a well-earned rest. No one has a better social life than me just now, surely?!

But as time goes on, it is starting to feel quite different to ‘normal’ after all. There ARE still highs – among them; hysterical giggling at other peoples’ creative hilarity, feeling united as a family as we bunny hop with Joe Wicks together, SO many interesting new things to try out via YouTube, a new-found justification for retail therapy, and always having my beloveds around. But there are new lows too: having that Fly By song in my head on permanent repeat for a start (you know the one – ‘…got the city on lockdown…drive by in the low ride, hands high when we fly by, fly by…’ – no? Just me then?), the ongoing eternal struggle to motivate ourselves and the children to do things that we know will make us all feel better, that irritably exhausted eye-burning feeling from extended use of video calls, feeling so dreadfully bored of every day being more or less the same, and…well, always having my beloveds around.

Yes. That same fact that feels like a lovely blessing on some days frankly feels stifling on others. Apparently there’s not really any way to tell in advance whether it will be a joyful day of gloriously loving, relaxed togetherness or a weary slog through a constant stream of fights, demands, and complaints, or both. But such is the nature of humanity.

We are fully aware that our position is incredibly privileged, considering what some people are going through at this moment. Obviously, like many with underlying health conditions, Ben is at particular risk from the virus and that brings a certain level of concern and the need to be extra careful, but the nurses at Ben’s hospital tell us that so far they haven’t had any admissions of children who have contracted Covid-19, and that’s reassuring news.

For us, all the upheaval of Ben’s cancer diagnosis last year – which totally pulled the rug out from under the feet of our ‘normal’ life – meant that we were actually really well prepared for a lockdown scenario. Unprecedented change had already come and re-shaped our work, finances, future plans and more, and it caused barely a ripple when the storm hit this time. Still though, the longer it goes on the more it does feel like something to be weathered, pushed on through, survived with gritted teeth. But I don’t need to say anymore about the Covid-19 storm, you’re in it too. We can do this, people. We can do this!

The good thing about storms though, as the nation’s children have recently reminded us, is the appearance of an occasional rainbow.

We celebrated a milestone this week. Ben completed the final block of his intensive chemotherapy treatment, and all the indicators remain that it has been successful. Woo hoo!

The intensive part of the treatment started on the 2nd July 2019 when Ben was diagnosed but thanks to infections, delays, and blood counts recovering at a snail’s pace, it has all taken a bit longer to complete than we expected. We had anticipated finishing around February time, but here we are almost at the end of April, a fact which makes us glad afresh that we didn’t try to power through the experience and keep living in the Borders, two hours travel time from the hospital. All those many months of separation would have been unliveable, so although we miss Newcastleton more than ever under the restriction of lockdown conditions (oh for nearby mountain bike trails, big private gardens, and plentiful uninhabited countryside), we are reassured at least that we made the right call about where to live during treatment.

Once Ben’s blood counts have recovered this time round, he will start the ‘maintenance’ phase of his treatment. As we understand it, this means the leukaemia has been blasted into obliteration by high doses of toxic chemo, and so now low, gentle doses are administered for the next two and half years just to make sure it doesn’t come back. It means less of Ben feeling rubbish from harsh chemo drugs, more of him returning to his energetic pre-illness self (yes, we are bracing ourselves) less hospital visits and more outpatient clinic appointments, less vulnerability to infection (we’ll take that just now, thank you) and more medicine given at home instead of in hospital. Hopefully, in short, the worst of that particular storm is over. Hurray!

Naturally, we needed to celebrate this, and Beth and Joe decided that a rainbow-themed ‘Well done Ben’ party was in order. It just so happened that Ben was discharged from a stay in hospital after his latest infection the same day that his final block of intensive chemo officially ended, so he was most excited not only to be allowed home at last but to find on arrival that he was having a party too!

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We invited everyone round – I’m joking, put down the phone! – it was just the 5 of us, but we still had fun. Pass the parcel, rainbow hair chalks, throw the Smartie in the right coloured container, a rainbow cake, and no expense spared on the balloons – we improvised and blew up a pair of latex hospital gloves for a nice Covid themed touch. Necessity is the mother of invention after all.

Ben kept getting a bit confused and thinking it was his birthday, but nonetheless he kept saying ‘I love my party!’ with delicious glee, and when he was finally stuffed with brightly coloured foodstuffs and thoroughly partied out, he joyfully declared it the ‘best party EVER!’ – and we knew success was ours.

Like everyone at the moment, we are phenomenally indebted to the NHS, thankful that our boy has had access to expert care and expensive specialist treatment for free, and that other people’s professional expertise have saved his life. I sincerely hope we never take such a privilege for granted ever again.

We are so incredibly grateful to God that Ben is still with us, that the chemo has worked, that his treatment was allowed to continue through lockdown, and that he is still our irrepressible Ben, seemingly quite unscathed by all he has been through so far. We are grateful afresh for all the love, support, and ongoing interest from you, our friends and family around the world. We couldn’t have got through this without you. Thank you.

It was pretty rough for a while there, and storm clouds are still visible, but the treasure we found under this rainbow is worth much, much more than gold.