Sunday, November 13, 2011

So, where to begin?  As the days have gone by and Tuesday draws near, I keep thinking that maybe it makes more sense to write after our appointments the day after tomorrow, for then we should have answers to a lot of our questions;  Did they get it all?  Is there still uptake?  What about the pathology report?  Is it the same kind of tumor?  Why didn’t Ale respond to chemo?  Why haven’t we heard back on the decision to fund the treatment or not?  But so many days have already gone by that if I don’t write until Tuesday these last few days will feel like the distant past and I’d like to get down at least some of what’s been going on.

The surgery went well, and over the last few days we have seen Alejandro grow stronger and stronger until he pretty much seems like the same Alejandro he was prior to surgery.  We have been very expectant.  Aware of every little wince, flinch of pain, limp, weakness or overall tiredness.  I’m sure we’ve driven him crazy, although we always try to mask our concern.  But he seems to be fully recovering.  Since one of the most important factors we all agreed on going into this was that it should only be done if there was the possibility of him coming out of it with no long-term pain and being able “to run and jump as always”, we have perhaps been overly aware of every little detail. 

The first days at home were tough because Ale was still having discomfort and weakness in his left leg.  But in the last two days or so it seems to be subsiding.  We took the kids to the science museum yesterday to see a dinosaur exhibit and Alejandro ran around like a maniac for the whole hour and a half we were there.  He only asked to be picked up to see the exhibits he couldn’t reach on his own.  And once again he’s back to being the last one to fall asleep at night.  I know I’ve said this before, but I am so amazed at his ability to bounce back.  He is the strongest, bravest and stubbornest child I know.  Even with his leg and incision bothering him, shortly after returning from the hospital he insisted upon riding his motorcycle and running on our way to do errands.  I physically had to stop him at one point when it looked like he was really uncomfortable to tell him how strong and brave he was, but that is was ok if he was hurting to take a break and rest.  He looked up at me and said, “I know” and then continued on his way.  I ended up having to tell him I was tired and needed to sit and have a coffee, if he didn’t mind, and that he could have something to drink as well.  To that he agreed.  So we sat for about 15 minutes in a terrace before going on to the next errand.  He just blows me away sometimes.  He is only four.
We are also anxious, as always, to find out the results of the scans.  This is the longest Alejandro has gone without treatment since relapse and that really scares me.  The chemo wasn’t shrinking the tumor, but it does seem to have prevented it from spreading any further, so we are hoping and praying that nothing new shows up.  On Tuesday Ale will be starting Accutane, so if the surgery has left him with no visible disease, hopefully this will keep another relapse at bay until we start the antibody therapy.  And no, we still have no news from CatSalut.  I have no idea if this is good or bad.  But we do intend to find out what’s going on on Tuesday.  The date is drawing near and the hospital in Germany has to be paid upfront before treatment begins.  Thanks to all the donations, we are close to covering the cost of treatment so we actually feel like we are in a position to put some pressure on them to rule one way or another and not keep us hanging.  We have now passed the 10-12 work-days they said was needed to approve or deny funding.  I would like to think someone would be able to tell us something at this point.

And so, here we are.  Waiting, waiting and waiting.  Trying to keep calm.  Trying to focus on the here and now and not get crazy about what may happen tomorrow.  Tuesday we should know more.

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