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.

Fenretinide Study - Cycle #3 almost complete

Wow! A lot has happened since my last post.  For the first time ever, I now understand the difference between the marrow and the aspirate tests and how it relates to Jonathan's results.  When Jonathan goes for a Bone Marrow Aspirate - they are actually taking a piece of the soft bone (not the core) and some of the liquid (marrow) as samples.  The soft bone is the bone marrow test, while the liquid is the bone aspirate test.  When the previous set of tests came back positive it was the bone marrow that was coming back positive - not the aspirate.  So the way I picture it now is that there are NB (neuroblastoma) cells that have stuck on or clung to the inside of his bone and we're trying to clean (scrub) it away vs NB cells that are free flowing.

The interesting news was that the results from his last bone marrow aspirate test came back negative - even after the staining test.  Again - similar to what happen in May - I am being cautiously optimistic.  Our oncologist has already scheduled another bone marrow aspirate test in three weeks - which happens to be next week Wednesday (20th September) - so this will give us more definite news on whether this is a false negative or whether it looks like it might finally be clearing.  What's going to be interesting is that we may have the bone marrow and aspirate taken from a different spot.  My concern is that the same area is being sampled all the time, so that area must be getting soft.  With the requirement of six months for the sample area to heal, then it means the areas on his back is not getting healed.  So this time the samples will be taken from the front of his hips.

Other than - we went to camp Okizu over the labor day weekend - 1st to 3rd of September.  All I can say is that I'm glad we went.  It complete blew my mind.  Arielle loved it so much she was crying when we had to pack up and leave.  She was a little upset the next day (for a little bit) that we had to leave.  I'm glad the kids had so much fun.

So Camp Okizu had a family camp for families where someone is either undergoing active treatment or has had cancer in the past.  The facilities have lodges but we didn't sleep inside but on the porch.  So the kids got to sleep in sleeping bags with the sky as our ceiling.  I think that was the most awesome part because with the hustle and bustle of life it's very easy to forget what nature is like and just being able to slow down a bit.  Our meals were taken care of as well - so yes - it wasn't a real camp but it did serve as a good introduction to what camping might be like.  We also learnt that they run an Oncology camp - just for the patients - and a SIBS (Special and Important Brothers and Sisters) camp - just for the siblings of patients.  We're hoping that Jonathan will go to the Oncology camp - the major challenge being able to convince him to leave mommy and daddy behind and spent a week in a strange place.  Arielle is too young though - the minimum age is six so she'll have another year or two to go.

We also had support sessions on both days (Sat and Sun) for the parents.  It was interesting hearing everyone's story and the challenges they had to go through but the eye opening was learning about the problems that siblings experience.  Either feeling like the second wheel, or that their parents don't love them, or that they are not important and that the cancer patient gets all the gifts.  We suspect that Arielle has some of those issues so it makes us realize that this is something we have to mindful of and try to treat them the same.  The classic example given was the example of when you hear your kids cough.  It's almost second nature that if the non-cancer patient was coughing then there wouldn't be much concern - sort of like "oh, it's only you that's coughing".  If it was the cancer patient that was coughing then a totally different story.