Waiting for round #4 of Fenretinide Study to begin

Jonathan's next bone marrow aspirate has been delayed.  Instead of having it done this week as was planned two weeks ago, it has been pushed to after cycle #4.  The main reason being that it was not necessary to verify the results so soon and there is another (general) re-evaluation planned at the end of cycle #4.  I'm happy that it got pushed because it means one less procedure for Jonathan.  For some reason I'm more nervous now about Jonathan going in for small procedures than I was a couple of months ago.  Even the thought of him going in for (minor) surgery to remove his Hickman catheter makes me nervous, when I know full well that I should not be nervous.  I guess, in this regard, I'm happy that Gabby is the one to take him in because then I don't have to worry about the actual event or having to bother the nursing or medical staff with 'trivial' questions.

Last week, we saw more problems with withdrawing blood from Jonathan's Hickman.  Although we could push fluid in, i.e. for his daily flushing of Heprin, we could not 'draw back' blood.  A couple of weeks ago, we had similar problems and we were fortunate that using TPA helped with breaking down the blood clots but we didn't know if it would have worked again.  The question is whether the blood clot was at the end of the Hickman (in his artery) and if it was the case, using TPA wouldn't have helped because the clot isn't in the Hickman.

As an aside note: TPA is a powerful anti-clotting agent.  When a Hickman gets clogged, just enough TPA is pushed into the catheter to fill the lumens (lines) with TPA but not enough so that it enters his blood stream.  After allowing the TPA to remain in the line for a certain length of time - the TPA is extracted  out of the Hickman, thereby preventing it from entering the blood stream.  From this explanation it's clear that if a blood clot is within the catheter then it can get dissolved but if it's at the end of the line then it's more difficult to dissolve.

In Jonathan's case, we suspected that the clot is at the end of the line and while pushing fluid will push the clot away so that the fluid could enter his blood stream, drawing back on his line would cause the clot to block the entrance to the lines thereby preventing any blood from being drawn back.  Thus, with this second occurrence of this problem with his line - we were not sure if they would have to remove it or if some other (invasive) method had to be employed.  In the end they tried the TPA again, letting it remain in the lines for about one hour, and that seemed to have fixed things (for now).

This afternoon, Jonathan goes in to get blood drawn for his immune reconstitution tests.  The results from these tests will tell us how the recovery of his immune system is proceeding and whether his immune system is at the same level as a normal kid.  Remember that last year Jonathan had a stem cell transplant which wiped out his immune system.  By using his own stem cells, his body is now regenerating his immune system.  It was estimated that it takes at least 12 to 18 months before his immune system will return back to normal.

Other than that, things are going well.  The problems with the insurance company seems to have been resolved.  Apparently there was a contractal issue between Aetna HMO (my insurance provider) and SCIPPA (the medical group that acts on behalf of Aetna HMO for more common procedures).  This issue was causing our medical providers, such as Stanford, to not get paid for their services.  I remember the day that triggered my investigating to find out what was going on.  It was a Friday afternoon (the worst time for this to happen) and I got a letter in the mail from Stanford billing department advising me that services on January 19th 2005 were not being paid (by SCIPPA or Aetna HMO) and that this claim has been forwarded to their attorneys who are pursuing the matter.  Depending on the outcome of their investigation would determine whether I would be held financially responsible (although they didn't phrase it exactly like that).  At the time, my first assumption was that a (normal) billing problem had occurred and I'll just have to make some phone calls on Monday to get this resolved.  Little did I know that up to two months later I would still be working on this, but by that time Aetna HMO had recognized what was going on and was taking steps to alleviate the situation.

Other than that, the kids and us are still adjusting to the new rhythm of things.  Waking up early, going to school, doing homework, etc...  We've been lucky so far that most of Jonathan's procedures have been scheduled to occur either after lunch or later in the day so that we don't disrupt his schooling as much as possible.  Both kids are enjoying school, making new friends and learning a lot.  Hopefully things continue along this uneventful way with no major (negative) surprises in the near future.