Monday update

Yesterday I was dreading giving you guys an update – it was a very rough end to an already rough week. Niko was having so much unexplained pain – we ended up giving him some morphene – and that’s when we realized he must have just been in pain all week because he immediately turned … [Read more…]

Stories of kindness

I have so many of these already. And I want to go in chronological order! In the first few weeks of getting our diagnosis and sharing our news a great friend of mine sent me an email. And she still doesn’t know it yet (I’m sorry I never replied!!! although.. I think I did.. but.. … [Read more…]

Monday update

I lost my writing voice for a while there… Is no news – good news? Is no good news – no news? I don’t know… It was a bit of a rough couple of days for us emotionally because – we got to see a different team of doctors and they had a different view … [Read more…]


So many words and thoughts and stories… But then I think – what’s the point.. It’s like there are only two sides to this situation – either grasping onto every illusion of normalcy and gladly focusing only on the positives and thinking that everything else is just no big deal and we need to take … [Read more…]

Neuroblastoma 101

I really appreciate how many of you want to be informed and keep up with Niko’s treatments and progress! And in the spirit of efficiency and saving time – I wanted to give you a little run down of things. I think by this point in our life as a species, each one of us … [Read more…]