Friday, October 30, 2009

Scans - clear as mud

Well, believe it or not, the results are in. I have come to the realization that I dislike scans more and more. It seems the more that you look the more likely you are to find something and very often you know even less at the end of the process than at the beginning. That sentiment pretty much sums up how we feel.

Now, before I get too far into this, I should probably reduce the anxiety level about a hundred fold. Fundamentally, Sydney's scans were good. As far as we can tell, she is clean.

However, there were many more questions than answers.

The CT scan - the CT scan was clean. Well, that was how the discussion started out anyway. Then we found out about all of the anomalies. I hate when doctors do that but I understand why they do it. Clearly, they don't want us freaking out. So, here is what they found. First, for years Sydney has had "thickening" in her sinuses. It is something that has always been noticed. It was believed to be congestion and this is primarily why we have her on the barrage of Astelin, Nasonex, and Singulair. The good news is that the sinuses were continuing to improve with time. This scan was no different. There was improvement.

Another existing condition was a small lesion in one of her lungs. Again, we have known about this for years. Long ago we first thought it could be a spot of infection but, after it never resolved, we assumed it must simply be damage from something she encountered along the way. The point is that this CT confirmed that the lesion was still there. It did not change. It was stable. Over this amount of time that we have been following this spot one would assume that it is pretty unlikely that this could be neuroblastoma. It hasn't changed. It doesn't light up on MIBG. It is probably something else.

Here's the rub. They found another tiny lesion on her other lung. This was a new discovery. So, here we are. We found something else. Is it neuroblastoma, a little bit of infection, or just another one of those little anomalies that lots of kids get but that we just never see because "normal" kids generally aren't scrutinized head to toe with a CT? I don't know. You've got me. Regardless, as of right now, they obviously don't believe that there is a high likelihood that this is neuroblastoma considering their plan of action is to wait 6 months or longer to see what happens. Dr. Eames is yet to weigh in on the subject but I expect her to feel the same way. I did talk to her in the hallway as we left the clinic and made her aware of the findings. She gave a small look of surprise but was clearly not too alarmed. I imagine she will take a look and give us a call to settle any unsettled nerves.

Don't get me wrong. If we wanted to go after this aggressively they would probably aid us in the quest to find answers. However, after this much time and experience we are a little more trigger shy when it comes to things such as this. This far out, disease can always be found but, in our experience, you are more likely to find yourself on a wild goose chase that never results in any answers. You have to weigh risk, reward and the intangeable impact on quality of life and our fragile psyches carefully.

Third, the CT scan shows some stenosis (narrowing) in one of the veins in her chest. This is the same vein in which her central line was placed. From what I understand, this is a fairly common occurrence. They did not seem very alarmed about this and so neither did I. We will be getting some more details and researching it a bit further so that we clearly understand the implications are but I would not expect us to do anything about it other than to watch it.

Next, MIBG, it was clean - except for an area at the top of her chest. That is how it was presented. Don't you just love that? Though, here we are a bit more comfortable. This is an area that has always been there. It is believed to be brown fat which is an entirely different discussion for another day. The good news here is that there were no changes. There were no areas of gross disease and no unusual spots in the extremities. It was just a plain old clean scan and, for me, the best evidence that Sydney continues to show no evidence of disease.

Finally, I know this has already been a long diary entry but I simply have to include this little fact. Today it has been exactly 5 years since we saw even a hint of theoretical disease. Yes, it was five years ago today we had our "relapse" that mysteriously disappeared.

Useless, but a pretty cool milestone if you ask me.

Milestones are important. They are a time to look back, reflect, and appreciate, your purpose.

1 comment:

Zeynep Erden Bayazit said...

We are flying back home tomorrow. Milestones milestones...Looking at yours, we have a loong way to go, and with many unknowns at the moment. But, you give us hope, and we keep it. Congratulations!