Thursday night

We are home! From our last hospital stay! It’s all so hard to believe… But it is still monumental nonetheless.

We got to witness a whole group of medical students go from their first nervous days of residency to super bad ass second years.. :) learned all the nurses names (and I’m bad with names!) and come across wonderfully caring people in every department.. They know our faces all over!

And Niko has learned how to take medicine in every form possible, together we mastered administering shots… He’s learned about sunblock and hand sanitizer (that was the first thing he did when we got home!!) He knows words like pharmacy and laboratory, and what each one of those is for. And for a while there he kept saying the word “biopsy” because we used to repeat it so much… Dressing, heparin and alcohol wipe… I can’t wait for his everyday to be filled with less of that and more of swimming, fun and proper boy childhood misdemeanors.

I didn’t have any expectations at the start of this, and I never forgot that there were no guarantees. Each day was already a bonus, a present, another victory. So – while today is without question epic and amazing, in a way – it’s just another day… Because there are still no guarantees. We are still just going one foot in front of the other. Still every night before bed I have only one ask (sorry World Peace, not you anymore)…

I am also enveloped in an overwhelming feeling of gratitude. So many people have been alongside us on this journey, feeling everything so acutely – when we ourselves were often numb because of our defense mechanisms. Thank you for shedding our tears for us! And sharing in our joys!!! This big milestone is for all of you! And once we are off isolation – we’ll have a proper party!

If you haven’t already seen it – the video of Niko ringing that bell is all over facebook and instagram!

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Coldplay letter continued

People have been asking me about Coldplay… And I’ve been putting off writing about it, even though I knew I should, because they kind of broke my heart… And I spent some time getting over it – didn’t want to write about it while I was still upset. And after that – I didn’t really want to come back to it. So I didn’t… But alas!
One or two days after I wrote them I got a pop up for my inbox – and saw that I had a letter from Coldplay!!! I got so excited – I contemplated opening it a bit later – just because I wasn’t sure I was prepared to deal with the full intensity of emotions then and there. It would divide my life into the before and after, and I wasn’t sure I was ready to get caught in that whirlwind just yet – I was actually trying to take a nap!!! I was torn!
But of course I opened it and here’s what it was:

Hi Natasha

Thanks for sharing that. Please print off the attachment for Niko!

x

*Due to the overwhelming number of emails received, please do not reply to this email, thank you. x
Debs
Coldplay HQ

(see attachment below)

Immediately – I wasn’t sure what to think… I wasn’t sure what I had wanted in the first place so – how could I evaluate whether or not my expectations had been met?
By lunch time I started to feel really bummed, and even offended.
I envisioned the person getting my email – reading it several times through, tears running down their face. The ugly kind of cry with a “this is so beautiful!!!” and something running out of their nose. And them forwarding it to everyone and printing out a bunch of copies and hanging them up in the elevators and various bulletin boards throughout the office. (do people that read the Coldplay fan mail work in a special fan mail office?? Or do they work from home, all by themselves, with no one around them to share beautiful emotions with? I have no idea, but it kind of seems like the latter option, huh?) and then at the next meeting – they read it out loud and cry all together, and they’re so happy and sad at the same time, they’re not sure what’s happening to them. It’s like they’re experiencing the emotional equivalent of the “umami” flavor…

Somehow something in her response suggested to me – that was not the case what so ever… In fact – I wasn’t even sure if she had read the whole thing!
If a mother tells you she’s been living for a year in a cold reality of the fact that her child may die soon, and now has tubes sticking out of his chest through which he gets toxic drugs that have taken his hearing among many other life attributes that will be normal for millions of other people – you don’t tell her “thank you for sharing”. What the hell is that!!?

You know?

But again – can I really get upset if I didn’t ask for anything specific?
I’m not even really sure if I want to bring him to that concert – it will start at his bedtime… It’s over an hour away. He’ll probably fall asleep in the car on the way there… And then what – I have to wake him up? And we already have tickets for ourselves so – how would that work?… Etc.
Would it be a big deal for them to do something and set up a seat for him somewhere – probably not…
But – meeting them earlier in the day – driving all the way out there for that and then all the way back to drop him off at home – and head there again – logistically – that’s a night mare! And he’s 3, he’s shy.. I’m not sure he even really cares or has any concept of famous people.

And it’s not like I’m going to say – my kid is sick. Do something awesome for him! Of course – I think he deserves to have awesome experiences, and I will give him as many as I can but – there are infinite possibilities even without this one.
Do I think every child fighting cancer deserves to meet his or her favorite band – of course.
Are they his favorite band? I’m not sure he knows what a band is really… He’s 3, he’s just getting into poop jokes…
I don’t want it to be more for me than for him!! And – I think he’ll be perfectly fine without it..

So I guess the reason I am bummed – isn’t because I didn’t get some nice and special offer – I wanted to thank some people, genuinely, from the bottom of my heart and soul, and I don’t feel like my words were passed on to the people they were meant for…

CP auto

#nikolikes Pixar!

Before I wrote a letter to Coldplay, I wrote one to Pixar (guess I like writing letters.. =)) and had the honor and the pleasure of hand delivering it! One of Niko’s doctors has a friend that works there – and we got to go for a tour. IT WAS AMAZING!! Definitely more so for the adults than the kids. It was more epic than meeting a childhood hero – I specifically remember the time I first saw the Pixar short of the mom lamp and the baby lamp, it has stayed with me my whole life! Back then I was a small kid in Russia, and the odds of me ending up living minutes away from where that was created, and – getting to take my children there to share this with them – I’m still blown away!!! It was such a wonderful day, it wasn’t just an emotional recharge, I feel like it created new levels for storing positive energy that I didn’t even have before. It was a great experience! One that we will definitely treasure for the rest of our lives!

I believe cartoons are the purest form of art – intended for the most innocent audience, they come directly from the heart. They are a big responsibility – they can have HUGE impacts on people’s lives, forming foundations for their characters… I value, appreciate and respect quality cartoons a lot. They teach us how to feel, and to dream and to hope. Our world can suck sometimes, but most of us have this undying hope inside us, and I’m sure the cartoons we watched as kids have something to do with it!

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Dear wonderful people of Pixar!
We are so honored to be able to give you our thanks.
Your work has brought so many smiles to our family and so much comfort and security to our son Niko. Over the past year we’ve spent months in the hospital for his cancer treatment and – we got through it by having movie marathons. Niko likes to watch his favorites again and again. Picking out and appreciating the tiny details (the way Wall-e practices holding his hands, or how Mike’s butt is smoking when he gets stuck in the engine of his new car). Each of the Toy Stories (including all the shorts) is treated as an independent feature (and his absolute favorite is partysaurus Rex!!) with all of the main characters residing in his room. He picked out red hearing aids – the color of McQueen and for a long while he used to always have to have his favorite cars with him in the hospital bed. He even has a little McQueen suitcase that he takes with him to the hospital and always rolls it himself! And we sometimes talk him into eating by reminding him about Ratatouille (and that’s how he knows Paris!)

Thank you for creating his first friends (since we are on isolation and have been scared of germs for  a whole year now) that are always there for him!
You do amazing work, and it makes the world a better place in more ways than you know!

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Now every time we’re watching a movie and the Pixar intro is on the screen – I ask Niko – what does that say??? And he yells PIXAR!!! And I tell him that all those wonderful people made this movie just for him.

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!!