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..

Niko update

100 years ago we didn’t have penicillin (in fact, it wasn’t discovered until 1928, and wasn’t used to treat infections until 1942!). There were so many more things to fear back then. Just think of how many times you’ve taken antibiotics in your life, and felt better soon after. And what if instead of doing that you had to lay there, dying, and praying for your life. And today we have ways of treating so many different types of cancers and even curing most of them!

(which is why it seems that much more ridiculous to me to have kids dying of 100% preventable diseases, but this is not a post on that topic)

Niko is done with his surgery. He’s rather comfortable. And the expectation is that he is now disease free. It is still a thought I have to get used to! It’s a task made more difficult by all the procedures he still has to undergo. I’ve spent so much time focusing on and preparing for the transplant that I don’t even want to divert my attention from that. The transplant is so sucky and rough, and if I think of it in terms of – he is now free of disease, why would he need the transplant? – doubts start to seep in, and justifying putting him through all that  becomes impossible.

So, that’s what’s up.

And at least now I have some time to tell you guys all about our trip to Disneyland, so stay tuned!

Baby faves of 2015

In an effort to focus on the positive, I’d like to do a mini series of the best things from 2015. And adding in an element of good old shopping therapy – let’s look at the best “stuff”! And today that will be my favorite baby stuff!

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  1. Cloud B Sleep Sheep. I’m not sure who likes this more – the baby or myself. =) It is probably one of the reasons we did co sleeping for so long. They have many different animals with different sounds, etc. I chose this exact one because it has 4 sounds and 4 music options, as well as a 23 and a 45 minute option. I saw that some of the other ones didn’t have all of those features. 
  2. Water Wipes. I’ve griped about wipes before. But this is my ultimate wipe – for everything. Regular wipes have all this stuff in them that I always want to wash off my hands after touching them, so I can’t imagine that to feel nice on a brand new tush. Minuses – they cost a little bit more and because of how they are folded – they don’t pull out cohesively from a wipe holder/box/warmer etc. But the comfort, peace of mind and true feeling of clean – make it completely worth it to me!
  3. The Ergo Baby Performance carrier. My husband was very clear on what the carrier could NOT look like if I ever wanted him to wear it (looking back now, I could have just gone with one of the pretty ones that I wanted since I ended up wearing it by far the most) – so I only looked at, sorry for the tautology but – the performance points. We had a wrap before (I though it was more cozy!) but – oh gosh! We would get so sweaty in it!! After a 15 minute walk – I would have to come home and wipe us both with a towel and change shirts. I needed something that would be quick and easy, comfortable and as breathable and air circulating as possible! I’ve had no regrets! I also got the teething pads  and I am so glad that I did! The bag that attaches at the bottom – I got as well, but I don’t recommend it. First off – the giant velcro on it ruined my pants =(, it opens so wide that – since you can’t see it when you’re wearing the baby – I was always worried f I put my items in it, or on the floor, and that was not something I wanted to deal with at an airport. But it does fit a couple diapers and a small bag of wipes and a phone..
  4. Tiny Love Take Along Mobile. I don’t understand why more of these don’t exist! This is really the only style/color/brand that I found in a few days of searching. And here’s the kicker – it costs LESS than traditional mobiles! Why I care: first time babies always get the perfect nursery with coordinating curtains and bed sheets, and their name on the wall in plush letters, etc etc. Then the baby never sleeps in there (or at least – not in our case) and before you know it – the mobile becomes a hazard (at around 4-6 months, when the baby can try to reach for it) and you feel like you spent more time attaching the darn thing to the crib than it did soothing the baby! Also – the one time when babies need the most soothing and you can’t be there to do anything is – IN THE CAR! That’s why this little thing was PERFECT! it went from crib/bassinet to carseat without him having to break eye contact with his cute twirling friends!

I was originally planning on telling you about my favorite pacifiers (these ones) but – it is true that all babies are different and our second one refused the pacifier completely so.. that’s that.

There were lots of other brilliant items that we used and loved during the first year, but these have stuck with us the longest.

Monday update

Last week was a blur – with things getting back on track after the holidays.
We’re in a “calm before scans” period right now, and they are inevitably getting closer and the nerves are starting to build…

But today – I took Niko to the play cafe we used to go to on occasion. I’ve stayed away from it for a long long time.. Because, you know, you don’t know! :) you don’t know what kid has picked up what where and is now passing it on to yours on the slide.. The hard part is – it’s directly across the street from the lab! And today, after we dropped off his blood work he saw it and started asking to go. And he was so patient and nice about it. And I’m already feeling sooo bad for him for the upcoming transplant and his numbers are good… I said – what the hell, let’s go!

But I explained to him that first we have to make sure no one is sick, and if someone is, we might not be able to go. He was waiting to patiently, holding my hand, standing by the counter, while I explained our situation.. And it wasn’t busy, so – he got the green light!

And when it was time to go – he was totally cool about it. I was in shock! I think – he realized he’s a lot older now and it’s not as fun for him, and maybe also that we now have analogues of all the toys there, and more.

I’m really happy he got to do that! Warmed my heart!

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