Preparing for Fenretinide Study

The dice has been rolled, the decision has been made ...  After a very hectic week (which hasn't finished as yet) we're on our way to almost starting the Fenretinide study.  We're hoping by early next week to get final confirmation on when Jonathan can start the study.  On the plus side, this study can be given at home so there aren't any planned hospital stays and clinic visits are just to check in or get lab work done.  On the negative side, the testing for Jonathan's eyes are a painful procedure.  There are two sets of tests, the first one is where they dilate his eyes and measure the point at which he cannot see light in a dark environment.  The second test, which is the more painful one, is where they put contact leads in his eye.  The leads forces the eye lid to remain open and Jonathan is exposed to bright flashes of light - similar to the flashes from a camera,  The leads in Jonathan's eye, measures the eye's response to the light.  So, he has to deal with the pain of the contact leads in his eye plus having a dilated eye that is exposed to very bright (flashes of) light.

On Wednesday (19th) we had our consult for the Fenretinide study.  What is interesting is that there is a page for patients who are not adults, to sign off on, but Jonathan is still to young to be able to make decisions so right now Gabby and I make all the decisions about whether to start a study, etc...  I was just reading a post from a Dad whose daughter was diagnosed at 6 (six) years and she is now 13 years.  Here is a portion of it:

Anyway, as suspected she has a 3cm tumor that developed in her shoulder, this is where it get's real CHALLENGING, Bre is 13 yrs old and is VERY head strong, for those of you who know her, knows what I'm saying, We have been floating around in relapse land for about, oh a year and a half at least, for the most part she has felt pretty damn good. Now that we have a new development Dr. Kushner gave us some options 1) IV chemo ( top/cytox) 2) oral fenretinide 3) oral VP-16 and topotecan. I know he prefers option #1 and of course, I want the most effective approach for her but given that she is so determined about NO MORE IV CHEMO, NOT ANOTHER BROVIAC ( Hickman), I'm not losing my hair again, ect, ect... I know I can't convince her that it's the right thing to do. Then again, is it?!?! It was much easier when she was 6yrs old, I just made the decisions for her, when it comes to treatment. Now I think she asks more questions than us, and of course she is SO ANGRY and feels like she's had enough, At the same time, she hasn't had aggressive chemo for almost a year and is pretty damn strong,  never ending, What to do.

What is scary is that there is going to become a point in time when Jonathan will be old enough to make decisions AND those decisions may not align with Gabby or my own.  It will definitely be  interesting in the next couple of years, given that Jonathan is so head strong himself.

It's so funny, as part of our consult on Wednesday, Jonathan was getting checked out to make sure everything is going fine.  The nurse wanted to look inside his mouth but Jonathan refused.  He wanted her to check his ear.  He has this pattern that 'must' be followed.  The amusing thing - while I was watching him - was that he doesn't say anything, he just turns his head to give the ear and if you are not aware of his antics you wouldn't understand what he is doing.  So, like I said, Jonathan can be very head-strong himself.

It's interesting, at our last visit to the therapist I was talking about how headstrong the kids and be - both Jonathan and Arielle - and he was saying that was a good thing!  His point is that when they become adults they will be assertive, ask questions, not be pussies (sorry cannot think of the clean word right now).  The disadvantage is that headstrong kids make it hard for parents, i.e. more effort required, but, for the longer road, it's better.  I could see his point but it means a lot of parenting so that they don't deviate from the 'straight and narrow' road.

I must say that with us recognizing that we needed to spend more time with Arielle - things have improved tremendously.  No more writing on the walls :) which is definitely a good thing.  I can feel my relationship with my daughter slowly getting back on track and growing.  She is not just a mommy's girl anymore.  Of course, Jonathan and I are close and will probably be for quite some while.

The last interesting thing from our consult with our oncologist on Wednesday was regarding his bone marrow aspirate test.  We are hoping to use the results from the bone marrow aspirate tests to start the Fenretinide study, but if we cannot start the study by next week then we may have to do the bone marrow aspirate tests over.  The significant think about this last test was that they were able to get a cluster of cells BEFORE doing the staining tests.  Part of the requirement for getting on the study is that the patient must have measurable disease BEFORE the staining tests and if we have to repeat the bone marrow aspirate test then we may not get those results.  Now, your initial reaction could ask whether his cancer is starting to come back - because this is the first time (in a long time) we have see tumor cells without the staining tests - but for now we are going to chalk it up to due to sampling.

In my next post I'm going to write about my adventures with the insurance company :), getting authorization and working with Stanford.