Thursday, April 1, 2010

A sanctuary is not always a safe place

So, everyday this week Sydney has landed herself in the nurses office at school. At this point, I am unclear as to whether she is trying to set a new record or whether she is just trying to get out of class. Her symptoms have been twofold - I don't feel well and I have a headache.

Neither of which do I particularly care for.

If I am being honest, the headaches scare me the most. I have some significant issues with those darn things. One of my greatest fears for Sydney is a late brain relapse and, if I am being honest, I have some pretty good rationale for my fear. You see, I have a totally unproven theory that central nervous system (CNS) relapses are on the rise. While I have no definitive proof, I do have some evidence.

You see, as treatment for neuroblastoma improves and survival increases, we begin to see different types of relapses in sanctuary sites. These are the sites where neuroblastoma hides out. These sites are very difficult to reach with standard therapies and, thus, are a a perfect place for neuroblastoma to sit and wait and smolder. Previously, we did not see kiddos relapse in these sites because treatment was so ineffective that they generally relapsed in original tumor and metastatic sites. Sites where the disease moves more quickly. In other words, they relapsed their first - before they relapsed in the CNS. Now that therapy has improved with antibody therapy and the original tumor sites are being dealt with effectively one could speculate that the sanctuary sites would become a more common site of relapse. With longer survival times, the disease in these areas now have the time to grow and get the opportunity to present themselves.

Scary thoughts, huh?

Yep, that is the kind of thing that I think of and probably the reason I will earn myself an early retirement at the Mayo Clinic's Home for Schizophrenics.

By the way, I would gladly take that over the alternative.

The good news is that it is all just a theory. Outside of some evidence of the high CNS relapse rate at Sloan Kettering I really do not have any further proof other than some speculation by some of the nation's experts. It certainly has not been seen yet. But then again, I don't think it has necessarily had the time and opportunity to do so.

Regardless, that is the real motivation behind the cringe I get every time Sydney complains of a headache which, this spring, I have heard a lot of.

The good news? Well, as of late last week, you may recall that we had confirmed that Sydney has some significant sinus issues. With spring in full bloom, there are some pretty good indications of why she is having headaches and sinus issues. For this we have her drugged up pretty well. Seemingly, it is just par for the course. Every spring we seem to find ourselves with sinus issues.

Regardless, I will feel much better if I did not find her in the nurses office again today. We have had some discussions about her nurse habit and I am hopeful that it will put an end to the visits. If not, it will be a better indication that we have a more serious issue.

We will see what the day holds.

In the meantime, we will keep our fingers crossed and keep plugging away at purpose.

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