‘Please, go to the doctor today!’

It was Claire who raised the alarm. Claire, of whom my sister rightly commented; ‘She really is a ray of sunshine in your lives, isn’t she?’

I had been mumbling to Claire, and lots of other people, my concerns about Ben’s health for a month or so. Our two year old was strangely pale, he’d had a series of chest infections, and his legs couldn’t keep up with his own desire for fun and activity. He would climb onto his balance bike and instead of speeding away as usual, would ride for two minutes and then stop with a pained look and say his legs hurt. It wasn’t like him at all. Perhaps he would perk up in a few more days.

We were in the car, Claire, Ben and I, on Monday 1st July and I mentioned that Matt and I had recently found some unexplained bruises on him. Was it paranoia, or was there a connection with how lethargic he was? That was enough for Claire.

‘You went there’ she said. I wasn’t completely sure where ‘there’ was, but I suspected it was nowhere good…I did have a vague memory of my (former nurse) Mum telling me that spontaneous bruising could be a sign of something serious. I looked at Claire askance.

‘Richard…’ she began, and all at once I understood where ‘there’ was. Richard, Claire’s beloved brother-like cousin who died. ‘Richard had a series of chest infections, and bruising, and then was diagnosed with leukaemia…’ there was pain exposed in her voice. ‘Please go to the doctor today’. So I did.

We arrived at the doctor’s surgery for the fourth time in three weeks. I explained, feeling suddenly rather foolish, that I wasn’t happy with how slowly Ben was recovering from the chest infections. He just wasn’t right. The paleness, the lethargy, and now the bruising – ‘I think there might be something underlying this,’ I said. ‘I just want to rule out anything awful like leukaemia.’ It sounded ridiculous. He was probably just anaemic or something. Why did I take it too far and say that word?

The doctor was not convinced that the small series of bruises up Ben’s spine were anything out of the ordinary. ‘He’s rolled on something’ she said. I knew he hadn’t, but the more I tried to explain the basis for my concerns, the more it all sounded completely invented, motherly concern spinning wildly into obsessive paranoia. To my eternal gratitude though, the doctor was polite and thorough, and though unconvinced, acquiesced to my request for a blood test. If she was inwardly rolling her eyes it didn’t show. Ben whined as the needle entered his vein but sat perfectly still until it was over, then promptly forgot about it and went back to his toy. I thanked God for his easy going nature…not for the last time, as it turned out.

When the doctor rang 24 hours later and asked me to come and discuss the results, there was something in her voice that made my heart sink. Her grave face confirmed it when we met. Something was wrong, badly wrong with Ben’s blood. ‘Could this mean…leukaemia?’ That word again. Why do I keep saying that word? The doctor’s eyes were a picture of concern and sorrow: ‘That is one possibility, yes’. We went to our local hospital that night in a whirlwind of shock and horror.

I felt incredulous. Is this real? I felt that I had voiced my worst fear and after the initial skepticism the doctor had now taken me far too seriously. I may have had that inner suspicion, but I didn’t want anyone to believe me! I didn’t want to be right! And it seemed so unlikely; Ben was hooked up to a drip but bouncing around the room in his usual boisterous style, throwing toys and making demands, looking in that moment a picture of perfect health. Could it really be possible that he was so life threateningly ill, that he had…gulp, cancer?

Another kind doctor laid it all out for me after further hospital tests and examinations, at midnight that Tuesday. ‘I might as well be honest’ she said, ‘the most likely diagnosis for Ben’s blood test results is that he has leukaemia’.

It was the strangest moment, because it was the first time I had heard the word ‘leukaemia’ from someone else’s lips, not mine, and it is of course the last thing any parent wants to hear…but the minute she said the word, that word that I had kept on saying, I felt an inner confirmation, and with it, peace. Somehow, I already knew.

From the very beginning the doctors were keen to stress that leukaemia in children is curable. Praise God for that. And praise God for the National Health Service and that all this top level care is entirely free and available to our boy without delay.

‘We can cure it’, the doctor said, and when we were transferred to the Royal Hospital for Sick Children in Edinburgh the next day, we were utterly overwhelmed but strangely reassured too by the ‘business as usual’ approach of the oncology ward. They hustled us into a cancer treatment routine even before the diagnosis was completely confirmed. We were reeling and horrified at the coming invasions on Ben’s little body, but they were not fazed. They were not afraid of cancer. Treating cancer in children was normal and unremarkable for the oncology staff. Their brisk, undiluted confidence was a relief and a boost. Death may be the immediate fear on hearing the word ‘cancer’ but in this case it seemed it was neither imminent nor inevitable. They told us 90% of children with leukaemia are permanently cured by chemo alone, with very minimal long term damage, and there are other treatment options for the remaining 10%. Thank you God for that.

And so here we are, a month on, and living in a funny kind of normal. Medication, hospital visits, procedures, treatment…it’s our new way of life for now. We’re so happy to be back home, but Ben is a different boy to the one who left home a month ago. The shock and horror has mostly subsided, to be replaced by a dawning acceptance that this is a long road and we have no choice but to follow it. When Ben is happy, we are all ok. When Ben is struggling and sore or sad or subdued, we all struggle too.

We have a love/hate relationship with chemo. Nurses don thick gloves, aprons and goggles and proceed to pump harsh chemicals into his small unprotected body. The drugs are starting to take their toll on him now, not to mention the endless stream of upsetting or unpleasant procedures he must deal with. His slim little boy frame has been overtaken by the steroids and he has put on 4kg in a month, in fluid retention and as a result of extra eating. He looks very different, his face and tummy particularly very swollen and distended. He’s so heavy. His muscles are weakened and exertion leaves him breathless. He complains of various pains at various times. His hair has fallen out in big patches with just a little of his copper blonde fuzz remaining. He is often tired and easily upset and has retreated into his shell rather, only chatty in occasional bursts, and has no desire to be sociable with people he doesn’t know well. Our bouncy active boy just wants to sit in the pushchair and suck his thumb with his bunny and muslin. I’m grateful it’s temporary, I am not enjoying watching it happen at all.

BUT. It is saving his life. All this – it is saving his life. How amazing that the doctors know exactly what to do, can measure his progress and his body’s response to the drugs, and can tweak it and change it and tailor the treatment to what he needs. Medicine is incredible in what it can do and I am so grateful that others are experts in this baffling new world of long names and absurd rules, and can lead us through it all.

So for now, we wait. We comfort Ben. We do what we’re told and submit to the treatment even when it brings a lump to our throats because we know it will hurt him. It’s a little heartbreaking to see how much Ben trusts us and although he expresses his displeasure, he doesn’t argue or ask questions, he just accepts that what we say has to happen. We by turns hold close our other two, and struggle with their unsettled tiredness and ours. We share stories with other families on the ward, and wonder how we got into this strange club. But we are ok.

And what of Mexico? Well. We still want to go. We really want to go. Perhaps it’s escapism, but Puerto Morelos seems like the Promised Land more than ever now, we long to be there and start the adventure. It has been such a long wait already. In a weird way, we kind of miss it. We miss the team members we know we will soon enough be united to. This is certainly a spanner in the works, an unexpected curve ball and currently our plans are paused until we know how Ben’s treatment plan will unfold. Hopefully next week will bring some answers but until further information comes through about how the next treatment steps we can’t make any revisions to our plans, though we imagine that some delay will almost certainly be necessary. But we sincerely hope the delay is not too extended, and that we can step into that adventure as soon as it is safe for Ben and right for all of us as a family.