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.


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