Blogging in B Minor

Finally a date.  I think we are nearing the end of the vaccine chronicles….

After all of the saga with the vaccine, I have at least a date for the leukapheresis process that is the direct pre-cursor to having the vaccine.  January 8th – next week.  Of course, in keeping with our story, I still have to squeeze the time and location out of of these folks but these are minor details at this point, right?  Once this little 4 hour blood-filtering process is completed (it’s kind of like running your blood through a strainer and what’s left are dendric cells), the cells are sent to the lab, combined with the tumor tissue that they so desparately needed via overnight courier a day after my surgery on October 15th (quick math = that’s about 10 weeks ago) and voilà, I have a cutting edge, experimental phase 1/2 vaccine in my hands.  Anyone picture that scene from Dr. Jekyl and Mr. Hyde in the lab with smoke emanating from test tubes??  Sometimes this world feels a little like that.  It’s certainly not some potion but these are uncharted waters to a large extent.  For the same reason, it serves as a key opportunity

The plan: 

• Today, 12/30 I have another Avastin infusion assuming my blood work from yesterday all comes back fine – I’m assuming it will be fine.
• On Saturday, 1/3/09, I have an MRI downtown which is in advance of the leukapheresis and manufacturing of the vaccine.  This is a regularly scheduled MRI anyway but we also need to see if a) the Avastin is effective and b) if any growth has taken place.
• On Tuesday, January 8th, I will have the leukapheresis carried out.  By the way, you know how acronyms plague every industry and subsequently (and quite innocently) seep out during discussions with customers and in this case patients?  I was talking with the doctor handling this and she said “well, after you’ve been “pheresed….”.  I said “what?!”  What does that mean – what are you doing to me?!  I was of course joking but doesn’t that sound odd?  It sounds like they’re going to do something quite unpleasant to you. 
• The cells taken from my body after I’ve been “pheresed” will be sent to the lab and I will have the vaccine about a week later, ending the saga 11 weeks or so after my surgery. 
• DECISION POINT:  Here is the big decision
  • if Avastin is really effective, it’s easy – don’t fix what isn’t broken and use cryogenics to freeze the vaccine for potention later use.  Keep going and perhaps add a chemo agent – my neuro-oncologist has brought up a few that I’ve mentioned in previous posts. 
  • If Avastin is just keeping things managed, this is the most difficult decision.  Do you roll the dice?  I suppose you are in the same position as you are after surgery so we go with the vaccine.  We’ll know.  God will guide us.
  • If Avastin has failed, the vaccine is out and so is Avastin.  So we again freeze the vaccine and look for another treatment option.

A lot to go through here in the short term but we have a lot of experience in making these decisions and God is with us.  The decisions just become more significant and more difficult as we move down this road.

The last item I thought I’d cover was my son Aidan and something he said that I thought was amazing.  He spends the day with his Mom when he gets out of school, etc. so I always put him to bed and it’s a good way for the two of us to have some quality time.  We usually read a story and then he always asks “can we talk?”  Of course we can I reply and he always smiles and says “ok, what do you want to talk about?”.  We come up with a topic and talk it out.  Last night we were talking and I asked him, “Aidan, if you could anything in the world you wanted to, what would you do?  And I mean anything – what would it be??”  He asked “anything???” and I said “yes”.  Aidan thought for a minute and then said “I would ask Jesus into my heart.” I said “Aidan, that’s great but I know you’ve already done that so think of all of the other things and try something else because Jesus is already in your heart” and Aidan thought for a minute then said “I would just choose that again because it makes me feel joy and I would want to feel the joy over again.”  Then he said “What would you do Dad?” 

He’s a lot wiser than I am and far beyond his years at only the age of 6.

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