Monday, January 3, 2011

A cautious beginning

Well, well, well. Happy New Year! 2011 has arrived and we are ready for a new start. Last year left many questions about our future. We have done everything we could to bring about good karma. We haven't broken any mirrors or walked under any ladders. We have even avoided all black cats. For good measure we have a couple of four leaf clovers and we have been fervently searching for lucky rabbits feet. In fact, the only thing I have not done to prepare for the new year was to eat black eyed peas. Nope. The last time I did that was New Year's Eve before the birth of 2003.

Do the math.

Yes, I guess it is fairly obvious why I don't eat those anymore. While I can't prove that black eyed peas cause neuroblastoma, it is a convenient item on which to place blame. I hated those nasty little things.

Today I will be following up with Sydney's oncologists. The holidays are over and it is time to get back to business. I need a plan. I am still strongly considering a PET scan for Sydney. For some it may seem like an easy decision. However, we have to carefully consider several things. Most importantly are: How would a positive or negative scan effect Sydney's treatment or lack there of. This is a big kicker.

Would a negative scan mean that this was not neuroblastoma? I would tend to think that this finding would give us more confidence that this spot was not neuroblastoma but I don't think it would be conclusive. So, would a negative finding change anything? Probably not.

So, if that is worthless, what would a positive finding on a PET scan mean? Well, again it would not be definitive but it would certainly put a significant scare into us. It would probably even convince us to be more aggressive in biopsying her. The problem with a positive finding is that I doubt it would qualify her for any type of clinical trial. It would not be definitive enough to get her in position to do any real good. Sure, we could start chemo but that would be about it. No MIBG therapy, no oncolytic viruses. Heck she probably would not even qualify for antibody or vaccine. Everything in our arsenal would be off the shelf and I can't see any of it as a long term solution. In this sense, we would be fighting, quickly depleting her marrow, without any real hope of anything to cement another remission.

Where as (and I know this sounds bad) if she relapsed more definitively we would have more weapons in our arsenal and potentially more chance to deal with it effectively. I know, I know, it is a nasty double edged sword.

Yep, from that perspective, a PET may not be that helpful. In my "unexpert" opinion it is a much better tool to follow known disease that it is to diagnose it. And it is this theory that leads to my rationale of why I think a PET might actually be of help for Sydney.

Positive or negative the PET would provide a baseline. It would provide something that we could follow. If it is positive we could follow how quickly it is growing or if the spot is resolving. If it is positive, it may also illuminate other areas of concern. In this case, it does give us something to measure and if it is negative it just might give us a big breath of fresh air.

What are your thoughts?

I know this may not seem like the happiest way to start a New Year but it is what it is. It may turn out that, while the year may begin with caution, it may blossom into our best year yet.

As always, it is one step at a time and one foot in front of the other - with purpose.

1 comment:

laulausmamma said...

HAPPY NEW YEAR to all the Dungans from our Southern California family - where it snowed yesterday for the first time in over 20 years!!

PET scans are a good tool for a baseline - but the false positives can really through you into a tailspin. A sore throat/cold/virus in the system easily lights up areas that cause false concerns.

Sorry you have to make some more tough decisions for Sydney - as always...go with your will make the right ones for her.