Monday Music

A little bit of #nikolikes for you to charge up your week!

Niko LOVES this song, and now he always asks for it in the car. It is known as the “policeman song”. And if he sees trashcans he always asks if we want to crash them like the policeman.. =)) Enjoy!

 

P.S. if you’re like me and living under a rock of diapers – you’re probably thinking – who is this Curlie Q?? That’s Francesco Yates, he’s 20 years old (!!!!) and is from Canada. But the rest of his stuff has a completely different feel from this song. Or at least the stuff I’ve flipped through.

Happy Monday!

#nikolikes Coldplay

I finally wrote a letter to Coldplay. But it doesn’t fit into the form on their site!!! =) So – I’m going to place it here and send them a link to it. Maybe, hopefully, someone will read it!

 

 

Dear wonderful people of Coldplay, 

I’m a long time big fan. But I’m also a mother of two little boys. And my oldest one, Niko, – it feels weird referring to him as the oldest – he’s so tiny, he will be 4 in August… 3 months before his 3rd birthday he was diagnosed with stage 4 neuroblastoma. It’s been a shitty year to say the least… But I wanted to tell you guys thank you for doing everything that you do. Niko has been listening to your music from inside the womb even. I used to put on a special playlist of your songs for him every night for bed. Now he can’t really hear well without his hearing aids thanks to the chemo, so – we don’t do it anymore… But he’s still here! And at our odds – it’s already more than I could have asked for. 

He really loves the Sky Full of Stars music video. And I just recently learned the story behind it, and now I feel less crazy for thinking that all your songs are directed personally to me.. =) And Yellow… oh.. I can’t even think of that song without crying anymore. 

I heard a rumor that Chris visited UCSF Benioff Children’s hospital right around the time of the Super Bowl here in San Francisco. We were admitted to our bone marrow transplant there on Feb 7th, the day before the Super Bowl! I wasn’t sure how to feel about it – we were so close and yet so far – no visitors allowed in the BMT unit unless they’re on the list… But we watched the show on Youtube and spent a good three hours replaying the Adventure of a Lifetime video that popped up after. It is now known as the monkey song. Thank you!

I was originally going to ask you for ways of sneaking Niko in to your concert here in Santa Clara on September 3rd – he will probably still be in isolation and not allowed near crowds due to his recovering immune system. And then I was going to beg you to take a stand for pediatric cancer – because #4percentisnotenough. But now I just want to say thank you. Thank you for all that you do. Bringing so much hope and light to this world that is in desperate need of it. 

The support campaign that we launched for Niko is #Nikolikes –  the focus is not on anger and fighting but on the wonderful things that make life worth living and fighting for. And definitely #Nikolikes Coldplay!

There are so many things that can be done to change and improve the situation with pediatric cancer in this world. It is so not right for these kids to be suffering for something they are at no fault for. And sometimes – there is a chance for a cure, a treatment, but the family can’t afford it – the thought of that just breaks my heart. We are so lucky. We have great insurance. We live next to one of few places in the world that does the treatment that ultimately cleared his disease (the MIBG radiation treatment at UCSF).  Niko has had clear scans since his surgery in January – with no evidence of disease. We’re still finishing treatment, and it’s still brutal. But we get to have so much hope. And there are some parents that don’t get that – there are still, in 2016, diagnoses with a 0% survival rate. That was the case with neuroblastoma 20 years ago or so… I guess we’ll just have to keep raising awareness and calling for action. Thank you so much for your part! 

So much love, respect and gratitude, 

 thank you for getting through my long ramblings!

Niko’s mom,

Natasha Carmichael

P.S. We’ve been following your tour on snapchat (or snopchik as Niko calls it). We’re blown away! Niko keeps “wow”ing and exclaiming at every little thing. It had always been my dream to take him to your concert. And when he got diagnosed – that was one of the “bucket list” things I was bummed about. Hopefully sometime soon!! 

Time for something new

Well… if you haven’t noticed – I’ve been trying to find my blogger self for a while now.

I started this blog over 4 years ago now (wow!) because I was overwhelmed at the amount of information, often conflicting, targeting pregnant women and new moms. We all want to do our best – but sometimes it is so hard to know – what that best is, right? And I was going to do all this research and post my findings and help everyone breathe a little easier.

Over the course of time I’ve learned that – you don’t have to obsess about prenatal vitamins, as long as you’re getting enough iron and Folic acid in whatever supplement you have. DHA and fish oil – not required. Swaddling or not swaddling – not required.. And basically every little thing that’s out there – is mostly just a way to make money and doesn’t make much of a difference in the final outcome for your child. That conclusion doesn’t really leave me with much to write about now, does it? =)

And then life took me a step further and taught me another lesson – not only does doing “all the right things” not significantly make things better, your kid could still get cancer! You can make your own baby food, have your baby in the carrier 24/7, co sleep, breastfeed on demand, eat only organic, live on a farm, have pets, have no pets, not smoke, have no one around you smoke… Ultimately – all that doesn’t matter. I dare you to try and tell me that if I did more prenatal yoga, or only dressed him in organic bamboo outfits from day one – that “neuroblastoma” would not come to define our household.

Either you’re dealt a crappy hand or you’re not. All you can do is make the best of it or freak out about it… And all this time (since I was 18 weeks pregnant with Niko) I was looking for reasons not to freak out about things – because it seemed like everyone around me was trying to get me to do just that. And I was trying to use those reasons to convince others – and to better their lives by helping them have less stress about stuff that ultimately doesn’t matter.

But you know what. I can’t force you to change your mind or your life values. I can only change mind. And I’m sorry, but I can’t keep worrying about you… Plus – you can’t force your help upon others if they don’t want it! And the only issue that actually affects me – is whether or not you choose to vaccinate your kids but – I can deal with that on an individual basis and with principles of our future schools.

This whole thing has helped put everything into perspective and just to really enjoy the everyday. We get to live each day only once. There’s only 52 weekends a year, there’s only 92 days in a summer (and in the US – with the school schedule – there’s even less!!!). And you only get 17-18 years with your child – really, before they go off and do their own thing entirely (but they become more and more their own and less yours even earlier on). That just seems so short! And to have it potentially cut even shorter – which you never know – is always a possibility… Now my main and only goal is to teach my kids (by example!!!) how to be happy. In every situation and at any time of life. Because you know what – that’s really the point of life. And it’s tricky because you have to listen to yourself and figure out what it is that you need – that would make you truly happy…

 

So – how about – that’s what I’ll focus on? More stories and pictures of just our everyday life (and the pursuit of happiness)? Would you like that? Would that be inspiring?

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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Very few things are more depressing than “pediatric bone marrow transplant”… Am I right? But at the same time – few things can offer that much hope..