Today we signed a paper saying that we understand that there is a risk, and in Niko’s case the risk is doubled (20-40%) of developing liver failure from the bone marrow transplant that he starts next week. And we also understand that about 2-4% of kids die not from neuroblastoma, but from not recovering from this liver failure…

I wish I could say that our children can live in a better world than we do… But – how is this better? And the risk of developing a secondary cancer just from the treatment alone – has been weighing on us since the beginning.

I would much rather have more humane ways of treating and curing cancers than these “hoverboards” or… Retina displays, or 4g, or any kind of cellular data even. :(

I used to often think about – this worldly balance. How maybe if every child in the world had one extra cold this year – Niko would get cured of his disease… Because you know – it would balance out. Right? And then I’d think about statistics. How – this is so rare. And – someone has to get it. Sometimes, a phrase keeps bouncing in my mind – “my child has this so yours doesn’t have to”… And it kind of helps to carry this burden of the world. Takes it from being a random error to something with a purpose…

This is going to be the longest month of our lives. But at least 2 weeks or so into it – we’ll be able to gauge if it’s bad bad bad or just as horrible as expected.

Oh. And now we are entering into another world – endless hearing tests. The doctor described Niko’s current hearing as very disappointing, with only the lower frequencies being in the normal range. He’s gonna need hearing aids, especially for school. And I guess we start dealing with that next month…

And tomorrow we have to marinade for six hours in the city, in or near the hospital, to do a test to check his kidney function. Because apparently this hearing loss is usually linked to kidney function loss… But at least the kidneys recover.

So, in case you have nothing to do and feel like directing your thoughts to the universe/cosmos/religious set ups, if this transplant could just go well, with no extra add ons, and the hearing aids be an easy thing – that would just be so great!


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