Third induction phase - Day 6

I've been thinking a lot about whether God's hand has been a part of Jonathan life and his treatment.  My conversation with my spiritual director last week has been profound and has me finally believing that God's hand has indeed taken a role in Jonathan's treatment.  The example my spiritual director used was a mosaic.  When a mosaic is looked at too closely, all that is seen is the individual 'tiles' that make up the mosaic, but when a mosaic is examined from a distance the wonderful picture is revealed.  I (would like to) believe that my difficulty was that I was looking at the mosaic too closely and that I did not see the big picture, the beautiful creation.

If I step back a bit, God's hand is more apparent.  When we first started Jonathan's treatment plan, we had no expectation that Jonathan would have gained weight.  Our main concern was trying to figure out how to maintain his weight.  With Jonathan's weight dropping to 34 pounds, it was really astonishing to see his weight go back up to 40 pounds, especially since the nutritionist mentioned that the most you can gain per week is between 1 to 2 pounds.  Now that I think more about this statement, how did Jonathan gain all this weight?  Was the scale wrong?  Did he really lose all that weight?  Or did we get the wrong information?  I don't think so, because I remember another patient's mom telling us that her son took a couple treatment cycles before he started gaining weight.  Jonathan was able to do it over one treatment cycle.  Sounds unbelievable, doesn't it?

Another experience that lead me to believe that God's hand is taking part is that for the entire second cycle, Jonathan went through it with ease.  From the first day of chemo to the day before the third cycle, Jonathan was eating, playing and being like the Jonathan I knew before this all started.  The thing that really startled us is this - during Jonathan's second phase the plan was to collect 15 million stem cells over the course of 3 days, up to a maximum of 5 days.  Would you believe in one day they managed to collect 21.6 million cells!  In one day!  And to top it off, we got the news today that his stem cell collection is tumor free and the post-purging process yielded more than 1 million cells!  This means that we don't have to do another stem cell collection, and Jonathan has the stem cells he needs for his transplant at the end of his chemo cycle.

What will really top it off (not that I'm asking God to prove anything) is to find out that the primary tumor shrinks completely away so that he does not need surgery.  I've been told multiple times that all Neuroblastoma patients require surgery to remove the primary tumor regardless of how well they respond to treatment.  Let's see what happens when his time come in May, which, coincidentally is the month for both his and my birthdays.

As a cousin of mine puts it most succinctly, I probably don't see God's hand because we are 'in' His hand.  If this is true, I am indeed grateful for my son, but wish I had a more intellectual experience of being in His hand as well.

Today is day 6 of the third round of chemo and the Cisplatin anti-cancer drug is really taking a toll on Jonathan.  He is still battling a lot of nausea, having vomited at least ten times today.  Jonathan and I spent the day at the hospital (out-patient) clinic because I wanted labs done to verify his blood count.  While we were there, Jonathan got hydrated, because he has not been eating or drinking much over the last couple of days, and also got some anti-nausea medicines.  The good thing is that the clinic can administer his anti-nausea medicines via his catheter rather than what we do via his stomach.  This means that there is no chance of him vomiting the medicines out, and the clinic can administer other medicines that we cannot take home.

I'm hoping that he starts to recover from the nausea feeling soon because just now Jonathan will be going through his low phase and I don't want him to get a double whammy.  It will also be nice to be able to take him outdoors without having to worry about him feeling nausea or wanting to throw up.

Before I end tonight's journal entry, the other remarkable thing that happened today was that we didn't have to hold Jonathan down to take his G-CSF shot.  He still cried a bit and was going to put his hand to stop the needle, but he didn't fight or struggle the way he normally did.  I was so surprised that I had to give him three dollars instead of the usual two dollars whenever he gets his shot.  I would like to think that the anti-nausea medicines he got (which makes him sleepy) about half an hour before the G-CSF shot did not play a part in his lower resistance to the shot, but I guess I'll find out for sure over the next couple of days.

All in all, I'm very proud of my son and I am amazed at the strength he has to go through this experience.  If it was me, I don't know how I would have survived it all.