Homeless

It doesn’t feel like anything else. I feel like someone who has been unconscious for years and has suddenly woken up to another reality, another world I am unfamiliar with. As everything else is so new, so alien – and since I cannot remember the past – I don’t now know what to do, or […]

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Our big little man

The roller-coaster that we call our life has presented us with a few surprises since we last posted here. Slowly, but resolutely, Luca recovered from his first chemo and even managed to receive a second, reduced, dose without suffering much. As we were preparing to head off to Barcelona to start the immunotherapy, we got […]

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“Pain is just is”

I wanted to write about “pain” for some time now, both physical and emotional pain, but it was not the right time for it. I wasn’t inspired or perhaps I didn’t have enough experience of pain to write about it It is somewhat odd for me to say this aloud as I firmly believed until […]

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A love like no others

A dark hospital room illuminated only by the dim light emanating from the IV drip he is attached to day and night, the silence interrupted by the odd beeping of the machines when the quiet flow of the “toxic cure” is blocked. A frail, pain-stricken body tossing and turning in bed restlessly, hugging a brown […]

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A life like no other (in pictures)

When you are attached to IV pumps which release the “toxic cure”, and you feel nauseous and weary… There is not much to do other than playing Minecraft on i-pad or building legos… You eat whatever you find, hoping that he “eats” too while empty cups and plates are staring at you… You feel blessed […]

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Day of reckoning

We have a virtual family. The neuroblastoma parents. A closed group on Facebook with over 3000 members. All sharing the same predicament. Suffering from the same ordeal. Asking questions, trying to learn from each other’s experiences, getting advice; sometimes just venting out their frustrations with the “normals”. These are some of the things we, as […]

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Chemo rage

“Pain is good”, says the doctor. “We are killing nerve cells. Pain means it works”. And you know he is right. You are in war, a war with no rules. No jus ad bellum – the cancer does not consult the UN to wage a “just war”; no jus in bello – the cancer does […]

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Again (update from Luca)

Unfortunately, Luca is not stable anymore. After four months of “normality”, the disease is back with a vengeance. He was taken off the LA trial, and after an intense weekend of email traffic among oncologists from four countries, we brought Luca to Hospital Sant Joan de Deu in Barcelona which offers the treatment developed by […]

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The art of war – Part II

If I had a chance to meet the Chinese master Sun Tzu, I would have asked him a simple question: “How do you wait until it is the right moment?” Because if your sense of dignity, self-worth, hence your mental health and very survival depend on fighting back, then when you cannot fight, for one […]

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