Thursday, August 14, 2008

Three long weeks

So this is what the doctors told us this morning:

Obviously they don't like to see the AFP number rise out of the normal range.
They won't retest for three weeks, they want to wait for this last round of chemo to do it's work.
If there are cells that are chemo resistant than they would have to wait and see what her AFP number is. It has to be about 100 for them to find it on the CAT scan.

There is a margin of error in blood test, it could be up to 20% or so. I hope this is what it is.

I asked them what do we do if it comes back.

They said it will depend on where it comes back. Maybe more surgery. Maybe a liver transplant. If it is in the liver it sounds like the same chemo drugs won't work. If it is in the lungs a different set of chemo drugs could be used. It all depends on where it is.

We have recieved e-mails from other survivors and some say that their kids AFP's jumped around a bit also.

This is the mental grind that we will have to get used to as this AFP number will be very important for us for several years to come.

I just wish it had been under 12, in the normal range. With the last round of chemo behind us it would of felt like a celebration. As it was we were totally silent coming home.


I have to add my version of things. I'm scared also and try to hold on to the thought that AFP is just a range. Its so hard to think positive. Here are some photo's of us celebrating our "Last Chemo". Literally the alarm went off seconds before I took this photo signaling chemo meds were done. Ten minutes later we got the bad news on AFP. Its a roller coaster. - April


Mako said...

The waiting and the "unknown" must be the hardest part, but I believe in my heart that other families that posted are right--it's just a fluctuation that doesn't hold much significance. I will continue to keep you in our thoughts and prayers. We love you guys! Mako and the boys

Andrea said...

Oh I do hope it's within a margain of error. It must be so hard to not go crazy with worry. Like others have said, hang in there. We are all pulling for you guys.