In Black and White

DADDY:

May 21 2012

Yikes!  I re-read my first post and I cringed in horror at all the grammatical errors and missing words.  Doc, if you're reading this please forgive any comma splices!  Apparently proof reading is not just for theses and dissertations but also for simple blog posts as well.

Some semblance of a routine is developing here but I can't yet describe it.  Luisito is still in good spirits but I think the chemo sickness is still in the mail.  The flurry of visitors seems to brighten his day.  Yesterday was uneventful and I dare say normal.  Well, not quite normal if you look at all the tubing connected to my son.

The nights however have style of their own.  Luisito's breathing and heart rates need to be monitored at night.  The machine tasked with this job is very sensitive and its alarm is very LOUD.  You'd think the Luftwaffe was overhead and V2 rockets were about to land in downtown London.  During the first couple of nights I woke up nervous every time that alarm went off and hit the "call nurse" button.  They eventually persuaded me to hit the "silence" button if it was too annoying.  They are on top of things here and if there was a real problem then they would know.  It is easy to trust these people, they are real pros.

Last night the alarm went off and this time it was because his heart rate appeared too low for the supervising nurse's comfort.  In comes a slew of people to assess him.  I would have been more scared if I wasn't so tired.  The team quickly determines that he is fine and the night continues.  I have no need of an alarm clock anymore because Luisito simply yells "wake up daddy!"  when he needs me or is simply bored in the wee hours of the morning.

Luisito seems to be complaining more about the tube in his side.  I tell him that it shouldn't be too long before they remove it and his eyes light up when he hears this.  Once the tube is gone he will be far more mobile and some slice of autonomy should return to his life.  Now that I see the picture I realize that it enters his body at a higher point than I mentioned in my previous post.  It continues for another 14 cm into his body.  In the bottom right hand corner you can see the fluid the tube drains.  The tube is usually protected with tape: the picture was taken during a cleaning.  Its removal is scheduled for sometime in the next two days.  That should be something to write home about.

He also really dislikes taking his medication orally.  In a miraculous stroke of luck, the factory that manufactures the IV versions of his medications burned down in a fire!  I simply shake my head when I am told.  Giving him these medications via an oral syringe is a challenging task because he simply refuses to take them and throws a tantrum.  I find it ironic that the medicine he needs to take affects his behaviour, making him uncooperative, so that he refuses to take more of the medicine.

I have resorted to telling him that if he does not swallow the medicines we can simply go back to the needles, down they go!  It's a lie: the oral option is the only route available for now but he can be really stubborn and scaring him with the needle seems to work.  It's become clear I was not the only one traumatized by the blood collections in the AM.  I'll tell him the truth when he's older!


Another thought crosses my mind as I see the waste from all the medical procedures pile up, cost.  If this was happening in the U.S. we would mostly likely be looking at a bill in the tens of thousands of dollars and we are just getting started!  We picked a good country in which to get sick. The idea that illness has been turned into a "for profit" business in other countries is truly revolting when you are living through one.

We also got our hands on the PRE-TREATMENT X-ray of Luisito's chest showing his uninvited guest.  I have drawn a line around the tumour in red.  The line is based on my understanding of the doctor's explanation.  In a tumour free child the majority of the X-ray would be "see through" as shown on the left side of the image between the tumour and his rib cage.  The first time I saw it I wasn't very happy.  In the very center the X-ray of the tumour appears densely white: that is because the tumour is covering his heart.  We were told by the doctor that the mass should be gone in about a month's time.  Treatment will continue for another 26 months in an attempt to prevent a recurrence.   Hopefully we will be able to show you the tumour free "after" image in about a month.





Another indicator of the tumour is the level of an enzyme called lactate dehydrogenase (LDH), lower levels are better.  The graph below shows Luisito's LDH levels, time moves forward as you proceed from left to right and the drop in the levels of this enzyme are clearly visible.  Hooray for now.

Outside the sun is shining and the relentless march of time continues.  The world is in its usual hurry and the summer time weather seems to be here now.  In previous years this weekend was reserved for planting a garden.  Squash, tomatoes, green beans, zucchini, sugar snap peas (Luisito's favourite) and some herbs would all be going into the soil of the garden.  The smell of fresh compost would be permeating my nose and covering my sweaty arms - maybe next year.