Giacomo’s story

written by his Dad, Ben

“It’s probably nothing. But can you get out of work and come down here, please?”

Lara’s voice was controlled but taut, with a jagged edge betraying a concern far deeper than that expressed. I could hear her instincts buzzing and her mind ticking over in triple-time. I knew in that moment she sensed the real possibility of something malevolent and terrifying the horizon, its form unseen but its approach unquestionable.

I trotted from the office to the car. I drove too fast in the rain to join Lara and Giacomo, then two, who had been referred by his paediatrician, Stéphane Guinand, for an ultrasound. Dr Guinand’s creased fingers, their decades of expertly walking their way over children’s bodies, had found something unusual. Feels like a swollen spleen, he said. Maybe an infection. Best get it looked at.

“Where are you? I’m worried.”

“There in five. Hang on.”

It was 5pm and almost dark already. We entered the radiology place and sat. Outside, a dismal December evening like any other. Inside, nothing was familiar.  Giacomo fiddled with some papers on a coffee table, scattered them over the floor. I told him off, finding momentary comfort in the ordinariness of parental reproach.

We were called in directly and ushered into a gloomy office where a monitor was the brightest light. The radiologist had been waiting. She examined Giacomo, who griped a little as she ran the cold, gel-covered probe over his abdomen. She said nothing.

We gawked pathetically at the screen, hoping to glean some sense from what we were seeing. The radiologist turned to us and told us to return to Dr Guinand. Frightened now, we began interrogating. What had she seen? Was it serious? What do you know? She opened the door and urged us to go.

We scurried back to Dr Guinand, shoving the pushchair across roads and up curbs, not daring to speak. We entered his office and the kindly old man pointed at two chairs in front of his large black desk buried under piles of papers and family photographs. He was smiling apologetically.

“It’s a tumour,” he said, finally. “I’m sorry.”

That night, we were shaken from the coddled slumber of our lives and rudely delivered into wide-eyed wakefulness. Life would thereafter be recounted in terms of before and after That Night.

What followed were endless bewildering, bustling days of science and numbers. Needles in, blood out, bandages wrapped, sheets changed. Blood, urine, drugs, tears. Biopsy, hypothesis, probability, science. It might be this, it could be that, can’t say. We won’t know until we know.

And then our foe was unmasked. Neuroblastoma, his name. Nu-ro-blast-oma. Greek for ‘grows in the nerves’. Stage four, metastatic, advanced, aggressive, probably-going-to-kill-you cancer. Fetch the chemo, no time to lose, let’s go let’s go…

 Over the next 18 months Giacomo lived under ceaseless assault at the hands of masked figures in white who said nice words but did nasty things. His vitality was gradually eroded by the lifesaving poisons coursing through his veins. He grew thin, hairless and lethargic, a pitiful husk of a toddler. His bodyweight tumbled and became our obsession. Every mealtime was a test of strength, his and ours.

Giacomo_Collage

 After eight rounds of standard protocol chemo, then four rounds of tougher chemo, the tumour was smaller, his bone marrow cleaner. The time had come to bash down the door and evict the squatter. He underwent a fourteen-hour operation, with two surgeons working as a tag team. They sliced open his belly from flank to flank, pulled the gash wide, and cut and scraped all traces of the growth. The tumour had sprung from a nerve on the adrenal gland atop his left kidney, coiling upwards and threading itself throughout his abdomen like roots of a weed, wrapping its greedy fronds around veins, organs and arteries. Like archaeologists, the surgeons had painstakingly picked away at the thing, speck by speck, preserving the good bits and discarding the bad.

 Afterwards, the exhausted surgeons joined us in the waiting room. Still in their theatre garb, they were pink-faced and shiny, but grinning. They had managed to remove nearly all of the tumour, and the remaining 3-5% was inviable, dead tissue. I wanted to high five them and throw my arms around their necks. But these were Swiss surgeons at the top of their game, so I settled for a composed handshake.

 Next up, high dose chemo and a stem call transplant in Bern. A month in isolation, with some of the worst diarrhoea and vomiting I have ever seen. At one point his backside was so sore he needed to sit in a bowl of warm water for hours. But we made it through that too.

By comparison, the six weeks of radiotherapy that came next were a breeze. He had knockout gas every weekday morning, which messed with his sleeping patterns, and made his moods funky. But really, it was a cakewalk.

Finally, immunotherapy in Paris. Five separate, two-week visits at two-week intervals. Two weeks on, two weeks off. Another grim trial, but very different from chemo. These drugs, Anti-GD2 and IL2 had bizarre and at times hilarious mood-altering effects, not unlike the high-octane mania of amphetamines. He would jabber crazily, and giggle at his own lunacy, compelling his audience to laugh with him. But these antibodies also induced terrifying, sky-high fevers. One night, he hit 41°C.

Today, almost five years have passed since diagnosis. Giacomo is in school, fighting fit, and living life. He has a new sister to grapple with. Kids sometimes ask where he got his scars, and he just shrugs, nonchalant. Every day I think of cancer less, although it is still every day. But the net effect of this experience has been an awakening. I always loved my son, but my feelings have been crystallised and supercharged by gratitude and the relief of averted agony.

Giacomo’s story typically draws incredulity and praise at the perceived achievement of something extraordinary. But we just did what parents do. Only Giacomo deserves admiration. He shines brightest in his own narrative.

Giacomo

Giacomo today

One Comment on “Giacomo’s story

  1. Hi I’m so pleased to read your story it has given me as a greatgran hope for our super hero Frankie he is stage 4 mycn amplified and relapsed twice he has gone through the same treatments as your son our hero is under the Great North children’s hospital in Newcastle the north of England I would be so great full if you could tell me where your little hero had his treatments done it’s so brilliant he has reached this stage in his life and is healthy we are always searching for new treats and places to take these children neuroblastoma is so aggressive I hope you won’t be offended by my asking for information thankyou ❤️

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