Wow, I still can't say that I have recovered from last week's scans. Don't get me wrong. We pretty much totally relaxed and decompressed over the weekend. I just don't think it was enough to recover from 2 pretty much entirely sleepless nights in a row. Making all of this substantially worse was the fact that this was the first time that Sydney truly bore the stress as well. Up until this point we had the privilege of carrying the worry and concern for her. She was too young to know what was at stake. But, this time - this time, she somehow knew - she knew the stakes were high.
Friday morning before we left for the hospital to get the results from the test she could be heard in the shower crying. When asked, she just said that she did not want to die.
What do you say?
As you probably know by now, by about 11:00 AM on Friday we knew that her latest scan had come back negative. That was as good of news as we could have received but it still leaves many unanswered questions.
Let me step back a moment.
This all began over a week ago with the results of her CT scan. Sydney's CT scan always seems to bring some surprises and this one was no different. She had a new sclerotic lesion on her breast plate ( this is the bony structure at the top of the sternum.) The lesion is about 5mm x 4mm. It was not present in her CT scan almost 6 months ago. So, it was a relatively new occurrence. Sydney also had several other lesions on her hips. However, these are all old and have been there for years. 3 of them, however, appeared to be slightly bigger. She also has another lesion on T9, and while this appeared to change size as well, it too had been there since diagnosis. While these lesions have grown it is unknown as to whether this just (1) a result of the way CT scans acquire their images, (2) attributable to the fact that Sydney has grown, or (3) something else. Regardless, as the official report points out, this is all "consistent with metastatic cancer." Hence the reason we were thrown into a full workup. The general belief was that we would confirm neuroblastoma and be thrust back into the world of childhood cancer treatment.
The problem (or incredible news) is that none of the follow up scans confirmed neuroblastoma. Her blood work was spectacular. There was no indication of anything being wrong. The bone scan, too, was perfectly clear. This indicated that whatever the issue was with the bone it did not seem to be active. Typically, with neuroblastoma, you would see activity as the cancer ate away at the bone and body rushed to try to repair it. None of that was there. The MIBG scan was the biggest hurdle. It was our most specific test for neuroblastoma but it came back negative as well. Unfortunately, a negative MIBG scan is far from a guarantee of being neuroblastoma free, however, it was a full dose of hope that it may not be the monster.
But, if it is not neuroblastoma, what could it be?
The other side of this coin is not very promising. While there are several other causes of sclerotic lesions, none of them appear to be likely candidates for Sydney. No, given everything else, metastatic cancer still appears the most likely candidate.
I know. It all sounds very depressing. However, there is some good news in all of this too. While it may look like metastic cancer, it certainly is not acting like something as aggressive as neuroblastoma. I think everyone is still shocked that the bone scan was clear. I think the belief amongst us all was that had this been neuroblastoma we would have most likely seen some activity there. Additionally, although this is a bony lesion and the type of relapse that we would expect from Sydney, it is not necessarily where we would expect to see Sydney relapse. I would suspect one of her original spots of metastases to be a much more likely candidate. The pelvis the spine, a shoulder or a rib would all be likely candidates for a new lesion but we really have not seen that - just slight changes which could simply be a result of time. This is another indication that perhaps what we are dealing with is not neuroblastoma. Finally, although it is a schlerotic lesion, it doesn't look exactly how a sclerotic lesion caused by neuroblastoma usually looks. There are some differences and that gives us hope as well.
So, what else?
Well, this is what I was talking about when I said neuroblastoma experts around the country were being consulted. We really don't know what else. So, we are asking everyone else if they have ever seen anything like this. Perhaps, if we can find others, we might find an answer. If it is not neuroblastoma, it is an unknown. It could be caused by some kind of late effect of treatment. Perhaps she has some kind of autoimmune process that is causing these lesions. Heck, it may even be some kind of indolent form of neuroblastoma that is being handled by her immune system. As an unknown, it could be any one of a million things and that is why it is key that we try to find others with similar findings. This could be something as simple as an undocumented late effect.
You see, the problem is that there is no one like Sydney. There is no one that has had every treatment that she has had. So, it is not like we can look at 1000 patients that have been treated just like her and look for side effects. For better or worse, she is an n of 1. Don't get me wrong. I would love to hear of others that share this "condition" We want an answer and preferrably one that is not neuroblastoma.
Could it be a side effect? Could it be a smoldering, slow-growing form of neuroblastoma?
Could Sydney live to be a little old lady? Could we just be sitting on the cusp of a major relapse?
We just don't know.
It is just fuel for more purpose.