Monday, September 19, 2011

Monday, September 19

Well,  we're at day 4 of this round of chemo.  Yesterday, on the way home in the car, Alejandro informed us that he liked this medicine because it doesn't make his tummy feel yucky.  He really has been tolerating this round really well.  Tomorrow is the last day of the first half and then we'll have 2 days off to relax before the last 5 days of the round.  Very draining going back and forth like this every day, but at least we get to sleep at home.  In addition, this week I got the ball rolling and sent out the cds and reports of the MRI and MIBG to Dr. Mosse at CHOP and Drs. Lode and Einsiedel in Griefswald, Germany... more waiting...

We're hoping to hear soon from the Drs. in Germany.  Our oncologist has already forwarded her medical report as to Alejandro's response (or lack of) to date.  We are hoping and praying that they consider this "perhapse" 20% reduction in tumor uptake as enough of a response to warrant antibody therapy.  We should know by the end of the week.

I also hope to get the sample for ALK testing sent out to CHOP by tomorrow afternoon at the latest. This isn't as simple as the cds and reports.  This is actually a sample of the relapse tumor.  The problem is that while everything we do here in Spain in regard to Alejandro's medical treatment is covered under Spanish health care, this test at CHOP is not covered.  Not even sending the tumor sample.  And since the hospital doesn't cover it, they can't send it and let me reimburse them.  No.  They have given me the tumor sample- which is sitting on the desk in the study- to send out personally.  This of course means that I have to fill out all the forms including the one for Spanish and American customs.  That should be interesting.  I can imagine someone on this end or over there wondering what on earth I was doing with a tumor sample!  Once they receive the sample at CHOP, it should be about 6 weeks before we get the results... more waiting...

And the kids are doing great.  Seemingly oblivious to all of this crazyness that is going on around them.  I mean, when I say "great" I am talking about Carlos being a tipical 8-year-old going on 14 (no one can tell him what to do- he knows it all!  And that mouth!  Where did that come from?!) and Ale who will not cede center stage for even a couple of minutes.  Alejandro goes to very great lengths to maintain the spotlight and has even learned a few jokes that he will gladly repeat over and over and over if nothing else has worked.  I swear.  There are days I would give anything to be the cool Aunt and not the grouchy mother.  They really are funny, but there are moments when we have to put on our "serious" masks and be parents, even when we are fighting against the desire to just sit down and laugh.

So, all in all, this week seems to be going well (even if it is still just Monday).

1 comment:

  1. Is the best gift, that part of a normal life; we learned this from some time ago...