Second induction phase - Day 10

It's been a week since we've been out of the hospital.  It has been a relatively good week - at least we didn't have to hustle each day to the hospital and rotate turns on who's night it was to stay with Jonathan.  I'm glad I had one less thing to worry about, i.e. I didn't have to worry about Jonathan being in discomfort, or fighting a new illness or not having fun.  Jonathan had a week that he was able to spend at home, to sleep in his own home, eat in his own home and have fun doing stuff he is accustomed too.  It was still a stressful week for us, for me especially.  I've come to realize that as parents we might be an anomaly.  The anomaly being that we are very involved in Jonathan's care.  More involved that other parents might be.

I spent Wednesday, Thursday, and Friday morning chasing down some of Jonathan's medication - the G-CSF shots.  I had to talk to Jonathan's doctor's office, the home delivery people and my insurance company.  I'm not sure when it will all end but I woke up this morning feeling very tired of everything.

Last week we met with a psychologist.  I'm a little wary on his usefulness - but I also had my first meeting with my new spiritual director.  I don't feel so bad now - after speaking with both men.  One of my concerns was that I was getting angry dealing with all the medical staff.  For being so involved in Jonathan's care.  I thought it would have been much easier or that I could have depended on the medical staff at Stanford ... but I just cannot.  One of the things I've learnt is that we should not stop continuing to ensure Jonathan gets the best care.  The scenario painted to me goes like this:

If we were parents who didn't say anything - then the nurses and doctors would be inclined to do whatever they wanted and they know we wouldn't say thing.  Since we are parents that are VERY involved - then the nurses and doctors have to behave a little differently.  They would (or should) know that we wouldn't take any BS, that they have to make sure and give us the right explanations or else we'll ask them over and over - why.  They know that when the Seepersad's come they demand expert care for their ONLY son.  Of course this is taking a huge toll and I know my energy is slowing waning away.

The other thing I've learnt is that anger is not necessarily a bad thing.  Anger actually empowers you.  It is what you do with the anger that is dangerous.  Anger in itself is a neutral response and it is what I do with it that is important.  So I don't feel so bad about being angry or upset that things are not going right or that I still have to be so involved.  I'm not sure how much energy I have left to continue to fuel anger but we'll see how it goes.

The sad thing is that Jonathan has been expressing pain in his chest / upper abdomen again.  This is the spot where he has experienced pain prior to starting treatment.  This is the spot where his primary tumor is located.  We believe the pain is due to this tumor.  The only difference between now and a couple of weeks ago was that he is not on pain medications - so it could have been he had tumor related pain before but the medications were hiding it then.  I don't know for sure but I'm really worried.  I'm really hoping that my son is in the 40 percent group of stage 4 high risk neuroblastoma patients that survive this disease.

This week is going to be interesting.  Every day this week Jonathan has to go into the clinic so that they can "draw labs", i.e. draw blood to do labs.  Tonight (Sunday) we increased his G-CSF shots from 0.3 ml to 1 ml.  This time the needle has to stay in his leg a little bit longer, not only because it is more medicine but we don't want to put it in too fast but instead give the body enough time to absorb it so it hurts less.  Jonathan has to get this increased dosage until the end of the week - because this is the week they collect his stem cells from his (peripheral) blood.  They have schedule three days for collection - Wednesday, Thursday, Friday.  Because of the 'luck of the draw' for the clinical trial he is on - Jonathan is on the 'purging' arm of the trail and the during the purging process they tend to lose a greater amount of stems cells than the non-purging arm so instead of collecting 2 sets of 1 million cells, then have to collect 15 million cells instead - because 10 million is sent to the purging arm.  I'm not too worried about the amount of stem cells needed - just more worried about the future.

I've also taken a look at the claims the hospital is making to the insurance company.  Up to now - Jonathan's care has reached approximately $230,000 USD.  We are only finishing our second induction cycle and Jonathan's care has costed close to a quarter of a million US dollars.  Could you imagine if I didn't have insurance what would I have done?  It is just crazy!

So ... people say God doesn't give you more than you can chew.  Hmmmm ... I'm still waiting for the lesson to learn in this one ... but then again ... this could be because of free will and not necessarily of God's 'deliberate' doing ... who cares right now.

I've noticed though ... I know Arielle is suffering but I've reached the stage where she cannot be shielded.  There is a sick child and unfortunately the sick child is going to use up more of the energy.  I'm hoping Arielle goes though this okay ... but only time will tell.