Yeah, the results from Sydney's scans weren't great and the air is thick with irony. You may recall from as recently as my last diary entry that I was not particularly concerned about the chunk of tumor sitting in Sydney's retro crural area. I was not concerned because it was not Sydney's biology to have this kind of solid tumor relapse. What I mentioned was that I would expect bony disease - bony lesions - multifocal sclerotic lesions and guess what - damn it?
I was right. The retro crural fullness was not even remarked. But, that was not where the news ended. They found a bony lesion.
Yep, we have a new sclerotic lesion on her breast bone. When taken with other findings we now have a collection which makes them multifocal. The are all kinds of possibilities in the differential diagnosis but none is more likely than recurrent neuroblastoma for a child like Sydney.
So, there you have it, the awful, bad, ugly news.
Is there any good news you ask? Well, neither myself nor the medical team are sure this is neuroblastoma. And, in this vortex of bad news, there is actually still some hope. First off, this is a sclerotic lesion by CT. Frpm that we do not know it is neuroblastoma. Furthermore, while neuroblastoma is a likely culprit, for Sydney, we have seen some pretty strange bony abnormalities which appear to have nothing to do with neuroblastoma. So with a healthy dose of skepticism, here is why I am not freaking out all over the place.
First, while this is a new lesion, Sydney has had several of these lesions in her pelvis and spine. Over the years they have remained stable and any changes have always been attributed to the way the CT scan sliced the images. Sydney probably has 5 or 6 (or more) of these lesions, all in the 1 - 5 mm range. As I have said they have been stable and non assuming and, interestingly, they have not been confirmed by MIBG. The only thing frightening about this new addition is the fact that it is new.
While a bony relapse may look just like this, in Sydney's case, something just does not add up. It is not exactly what we would suspect. For this reason, it has us all a little skeptical. We have a "heightened sense of awareness" but no one seems to be screaming relapse -- yet.
None the less, this is Sydney, and she does have stage 4 neuroblastoma. We can't rule it out and we have to go find more. For this reason, we are now lining her out for a full work up. Today she will likely get a bone scan and it we will try to work her in for an MIBG scan assuming we can get some for her this week. Unfortunately, we may have to wait another week. They order MIBG on Friday for a Wednesday delivery so the only way we will get scanned this week is if they have some extra.
You can probably also expect a bone biopsy in the very near future. We need to know what it is and I am guessing we will just go in to get it. I know this will happen if we have a negative MIBG result but it is possible that we may go in either way.
So, what else could this be. Well, I am skeptical of some kind of autoimmune process. This is the same nebulous culprit that I have blamed for the other lesions that we have discovered on her body over the years. Don't forget the strange lesion we had on her tibia or the bonus we found on her radius. I think, and I am hopefully praying, that this is all one in the same. The problem is that we may never know what it is. The good news is that it would not be neuroblastoma and that is about all we can hope for right now.
So, we are praying with all of our might that this is not neuroblastoma. We are looking for a clean MIBG. I am expecting the bone scan to be positive but that does not mean neuroblastoma - just that something is causing bone turnover. Regardless of the cause, I think we already know that is happening. Although, I would suspect that a negative finding would tend to point to a less aggressive process. Given Sydney's history and lack of MIBG lesions I am hopeful and guessing that her MIBG will be negative. While certainly not a definitive finding, a negative result by MIBG would sure make me feel a heck of a lot better.
I know, it sucks.
But, this is the reason I have so darn much purpose.