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 some time off, slow down, regroup, heal up, and hit the world full force later.

And the other side is an entire hell’s worth of fear. Fear of failure, and of pain, and of every inch we might give up in this fight – with every fever, episode of vomiting that results in lost calories, counts that take longer to recover, etc. That fear of – I don’t know how I’m going to live if this doesn’t work out – it is really paralyzing. I guess that’s what being depressed feels like. When you don’t even want to get out of bed because – why?.. Fortunately or unfortunately – (def fortunately) I don’t have that luxury, so I’ve got to keep going.

And that is the difference between a good day and a bad day. And on one bad day every single gently stacked fragile hope and belief just comes crashing down.

Because all these stories you encounter, all those “other people’s babies” (you know yours will do better because – they’re others, and this one is yours.. right?) – things go well, and then out of nowhere – they just start going bad… So any hiccup in the plan always has me freaking out.

We missed the first window for his stem cell harvest because of the frikkin 4th of July. Where was my freedom to have a healthy child? There weren’t enough nurses on staff to do the procedure. Even though the doctor assured us it wouldn’t be a problem, despite the rest of the team being ready to postpone his chemo a few days to accommodate the schedule. So – things got postponed. And now he’s got sores in his mouth, he can’t eat, he can’t swallow, he’s got a fever that’s just a few tenths of degree below the “come to the hospital NOW for antibiotics” and I’m holding my breath every time we take his temperature. He’s in pain and absolutely miserable and I’m just so angry.. =\

Thank you to the kind people of the world for pulling me through the bad days. And for bringing me meringues, and asking how we’re doing, and sending us packages, it means more than you can imagine!

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 has known at least someone who has had cancer. But here’s the thing with cancer – it is all so different. And from what I hear – everyone responds to treatment differently as well, which makes everyone’s experience very unique.

When the very beginnings of a baby are forming – each of the cells is assigned it’s role in the future organism, and the cells that receive the signal to be neuroblasts are going to turn into the nervous system. The cool thing about neuroblastoma – if there is a cool thing, and we are looking at it purely scientifically – it’s one of very few diseases that can reverse itself on it’s own and go away. Unfortunately – that is not our case as it has spread into the bone marrow.

Considering how much we still don’t know about cancer, there is so much progress that we have already made! Remember that agonizing time when we were waiting for the “pathology” report for over a week to get our diagnosis? That’s because they were gathering every characteristic of the cancer cells we know of today – genetic testing, resistance to this or that, qualities that make it more or less aggressive. I don’t know if it’s still like this with other cancers, but it used to just be that you had the type of cancer (or rather the organ that was affected) and the stage. And it basically meant – this is how fast you’re going to die or how much hope you should allow yourself to have.

But at least with neuroblastoma this is not the case. There is staging, there are also risk groups (low, intermediate and high). So once you get your diagnosis – you are in a very specific group and each group is assigned very specific treatment based on what has provided best outcomes in the latest studies.

There are only 650-700 cases of neuroblastoma diagnosed each year in the US (and yet, it’s the 3rd most prevalent type of childhood cancer!). Because of that – there is not a lot of data to have discovered a cure. But over the past 10-20 years amazing progress has been made. 20 years ago we would have been facing a 10% chance a positive outcome 5 years down the road. Now it’s kind of between 50-75%. The day before our diagnosis – a study had just finished, and the new protocol of treatment, which we are now on, yielded a 75% survival rate, instead of 50%. So those are some great odds and we gotta take what we can get.

That increase is achieved by doing a double bone marrow transplant, rather than a single one. Now the hard part is making it to the transplant phase and getting through it.

Blah blah blah, let’s talk Niko-specifics.

He’s stage 4 – it has spread. He is a high risk because he is older. Being over 18 months of age for this is considered older. But – he doesn’t have a large central tumor somewhere – so he’s not really a candidate for surgery or radiation. The pain he was experiencing before the diagnosis was from the cancer growing in his bones and putting pressure on the bone from the inside. Now, after 2 courses of chemo (induction therapy) he is pain free, actually he was pain free after the first course.

He is going to have a total of 6 courses of chemotherapy, and the 2 bone marrow transplants that he will be getting are going to be of his own bone marrow – which will be harvested from him this month. After that there are months of immunotherapy, where his immune system will basically be trained to attack these cancer cells if they ever appear again. The whole process takes about a year and a half, and 3-5 years after that if all goes well our “threat level” drops to about yellow because – we are going to have to be on guard basically for the rest of his life.

And just so we’re on the same page, this is our best case scenario, so – we don’t really have to talk about this anymore:

“Most long-term survivors alive today had low or intermediate risk disease and milder courses of treatment compared to high-risk disease. The majority of survivors have long-term effects from the treatment. Survivors of intermediate and high-risk treatment often experience hearing loss. Growth reduction, thyroid function disorders, learning difficulties, and greater risk of secondary cancers affect survivors of high-risk disease. An estimated two of three survivors of childhood cancer will ultimately develop at least one chronic and sometimes life-threatening health problem within 20 to 30 years after the cancer diagnosis.”

 

But you know, we’re always open to miracles.

 

Happy 4th!

We have never been as thankful for this country as we are this year.
If we were anywhere else – we would have to worry about scraping together money and travelling somewhere to find treatment… So many things that I constantly hear about people struggling with back across the ocean.

But instead we can focus on being together and enjoying each day to the max. And that is the greatest gift! The freedom from worries.
So thanks, America! Thank you for letting us enjoy bbq-ing in the back yard with papa! There is no greater pleasure!

Mustache cakes

When I get stressed, I shop…  And I’ve come across the biggest shopper black hole there is. Or rather – it found me. And sucked me right in!

I think every order I’ve placed from there can be somehow correlated to stressful points in my life…  :) mother in law coming for a visit.. Fighting with my best friend, thinking about going back to work.. My baby prefers dad over me.. This is a triple order situation now!

But it’s their fault for giving me free shipping through the weekend.
Now I just have to wait for like 3 weeks before I actually get my stuff.

But once I do – Niko will get mustache shaped eggs and pancakes, mustache shaped cookies, a mini stuffed cactus toy, and train and airplane shaped pancakes.. Yes #Nikolikes mustaches…
Maybe their next sale event will have an “add on kitchen” I can stick on to the house, just for my breakfast & mustache tools.

Not a lot of news on our situation. He’s happy and seems to be having a good time and enjoying life. I get sad seeing pictures of him with his cute hair, he seems so much older now. Some days I’ll come across a sad neuroblastoma story online, and then I’ll have a rough few days, and some days I’ll read a good one and get a little bit back to normal. But most days I feel like I’m just holding my breath. The expectation is that things will get a lot harder and a lot worse before they can get better. Just – trying to prep for that…

image

Support in, dumping out.

*Disclaimer: this post was written a while ago and I’m only now getting to editing it. I was in a different place and I think it might be a bit harsh, yet I still feel like it has a right to be and needs to be said. We are immensely thankful and appreciative of all the support you all have been sending our way! Don’t you ever think otherwise!*

Please don’t make me! Don’t make me have to hold your hand and tell you it’s going to be OK and walk you through my son’s diagnosis and treatment plan! I’ve already gone through those grieving stages. Don’t send me back again.
Don’t ask me basic questions you can find answers to online, especially if they’re based on things you’ve seen on TV.. All cancer is different. With a little research you can save me a lot of heartache. And definitely don’t tell me outlandish ideas that make it obvious you are doubting what our doctors are telling us.

The life of our son is in their hands. Clearly we trust them. It is important for us to do so, and to feel like we are doing everything we can and should. Don’t cast doubt on that. Don’t imply that this is somehow our fault.

If ever there was a time to follow the “if you’ve got nothing positive to say – don’t say anything at all” rule – that’s now. But you can substitute the “positive” with “supportive”.

This is a year and a half long process with the best case scenario being that for the rest of our lives we fear that it comes back and regularly do tests. Don’t use up all of your support juice in the beginning! We may adjust to this new life, but it still won’t be easy.

There is a great piece of writing on a model of communication in a time like this. Basically – there are circles, at the center is Niko, second circle is us, third – our family members, and so on. You want to channel your support toward the center of the circle, and if you’ve got a crummy day or an attitude about something – you dump that to the outer rings… Makes sense, right? But so many of us still tend to make it about ourselves!

And this is not to say that you all haven’t been beyond wonderful! You really have!!! I’m just trying to use my situation to help others – if you have a friend with a sick child. Don’t ask. Just help. Bring them food. Bring a cleaning lady. Walk their dog.. Bring a balloon! So many small things can make such a big difference!!

So many people have been so wonderful to us!! If only I could turn that into healing juice and force Niko to drink it…