Are You Sure This is the Right X-Ray??

Daddy:

May 22, 2012

It has been almost a week since this ordeal began and I find myself wondering where the time went.  In the initial days of these events time seemed like an abstract concept, as if I were outside of my life watching events unfold before my eyes.  Things have certainly changed around here.

Last night was mercifully uneventful, no alarms, no teams of nurses coming in to check his heart rate and best of all, the air raid siren (his heart rate monitor) did not sound once!  What a great night!  My sleep is still interrupted because the nurses still perform their routine nightly checks of his vital signs but I can live with that.

One of Luisito's nurses made a get well card for him, the detail in the card let us know that she really cares for our son.  I won't name her in case she is bashful but it meant a lot to him and us.  Thank you.  Unfortunately, her card, and another, fell into the trash and we did not notice it until they were covered in goop!  We suck!  Rest assured, we appreciate the extra sentiment and the care you have provided to our son.  The entire staff here has been amazing.

Now on to the news...

The morning started with an X-ray and as some of you already know, we have crazy news attached to it.  It appears that after 6 days of treatment with steroids and one round of the more intense chemo drugs, the tumour is gone.  YES IT IS GONE, you read correctly.  I am left wondering where this tumour went and I ask the doctors "Are you sure this is the right X-ray"?  They assure me that it is and when I see the port in his chest I am convinced.

The doctors are impressed with his response to the treatment but the protocol remains unchanged; the two years of chemotherapy remain a necessity.  The pictures are shown below: the left image is after 6 days, the right image was taken when we first arrived.  Look at all the black in the "after" picture!  Plus, his heart is clearly visible!  The bottom is solid white because of the lead apron he wore to protect the family "assets" when the X-ray was taken.  If you can't see the tumour in the "after" image, you are not alone, the doctors can't see it either.

So the roller coaster ride continues but this time it's good news.  I would like to inject some reality into the situation though before the party starts.  We were told that his body is still producing lymphoblasts, the cells that started this mess, and his neutrophil counts, along with other blood cell counts, are dropping.  I expect that he will have Neutropenia soon which means opportunistic disease will be a problem - this is just one of the many side effects of the chemotherapy.  So although there is cause for cautious celebration, there are still many obstacles separating him from final victory over this disease.


On that note I have a word to any would be visitors, if you are sick or feel like an illness is just starting, PLEASE STAY HOME until you are fully recovered.  I cannot overstate the importance behind the previous sentence.  We love the visitors: in fact, your visits brighten his days and ours but mama and papa bear will not let you in the room if you are sick!  The irony of his location, in a hospital surrounded by the sick, is not lost on me.

On the lighter side of things, munchkin is doing great.  He is getting out bed and walking around more: his strength is returning and I am thrilled.  The reason he was out of bed today is that the tube draining his chest was removed.  It was not a grisly affair at all: he screamed the most when they removed the tape protecting the tube.  One quick pull and it was all over and all that remained after was the gauze and a tearful four year old.

During the tube removal he was crying intensely and while I was trying to calm him I noticed something in the tube out of the corner of my eye.  It was moving forward and backward in the tube in perfect rhythm with his breathing.  At one point it went back in his body and I felt concerned.  The doctor said it was a blood clot but it looked more like squished bacon.  Anxious that the "bacon" would remain in his chest I made the nurse show me the tube and snapped the picture below when the procedure was finished.  Check it out...



The next item in his itinerary for the day was the next dose of chemotherapy: next at bat was the enzyme L-asparaginase.  For those of you who are actually going to the links I provide, go to the heading "Mechanism of action as a drug" in the Wikipedia page: the text will explain why he is taking the drug.

The beauty (sarcasm) of this drug is that it must be administered via two injections in the muscles of each thigh at the same time.  Talk about things going south quickly.  Fortunately, this is not a drug he takes often, only once every 3 to 4 weeks.  As quickly as things went south, they returned to normal and soon he was eating and walking around curiously exploring his room and a box of toys that we have kept out of his reach.  You can see the fruits of his exploration in the picture below.

His is still married to his saline drip but it's a minor inconvenience at this point.  He is holding an egg colouring kit and in my mind all I can see is the mess after he is done. "How about the Lego instead?" I ask hopefully.  I bribe him with some chocolate milk to seal the deal, disaster averted.


His "roid rage" is increasing along with his appetite but that was expected.  Every time he sees the orange syringes he goes into a mild meltdown mode because he knows he will soon be tasting some nasty medicines.  He likes to kick his legs wildly on his bed before he will even consider drinking the stuff!  It's a running joke between me and him so I indulge his horseplay.  Eventually the medicine goes down and his childish and lovable nature returns.  His appetite is also increasing.  I am thinking of getting him to do some weight lifting since he is on steroids!  That was a joke.

I still haven't left the hospital for some fresh air but I definitely plan to do so tomorrow.  There is nothing on the schedule until Friday when he gets another dose of chemotherapy via a spinal tap so I may as well go out and enjoy the city before that happens.  What is there to do in London anyway?