Walk In Chemo

Daddy:

Friday June 1st 2012

Not sure what the weather is like in Windsor but the weather in London is miserable, cold and wet.  It is into this dreariness that we venture out to the hospital for our first outpatient chemotherapy treatment.  Luisito is in good spirits but I think that the treatments might be affecting him more.  His stomach is usually sore, the result of the steroids.  His routine consumption of Ranitidine and Prednisone twice a day continues and has improved from a World War 3 scenario to something more like a sports victory riot in a city's downtown core.  In addition to these medicines, the doctors added an antibiotic to his regimen today: it is a preventative step to ward off pneumonia, which we are told is common for patients undergoing treatment with these drugs and can be dangerous.

Luisito has a limp now and he walks like and old man or as he would say "like my Pepe".  The cause is the Vincristine: the medicine is starting to affect the nerves in his legs causing pain.  He could be this way for the next two years but we are told once the treatments stop or their frequency is reduced he should recover.  It is little comfort in the present time to his mommy and daddy who have to watch their little boy walk like an 80 year old man.

His face is also "chubbing" up.  The lines of his jawbone are slowly disappearing and he looks like he needs to go on a diet.  Once again the culprit is the steroids.  His appetite is in overdrive and he cannot go more than 30 minutes before he is asking for more food.  His choices, or more accurately, his cravings, are not for healthy foods.  I will never hear, "Daddy I want more broccoli".
 
He demands cheese, hot dogs, McDonalds and more recently, pizza.  He does this with the subtlety and patience of a crack addict on withdrawal.  His stomach is like a black hole, massive and insatiable for matter, consuming everything in its path.  We have tried to suggest healthy alternatives like vegetables and fruits but his response is always the same, NO!  The steroids make him crave salty foods and the doctors have told us not bother fighting him.  It will only last as long as he is on the steroids, a little over 1 month.

When we arrive at the hospital we are quickly admitted and sent into a waiting room.  After 20 minutes we are sent into a private room for more waiting and then for the chemo.  He needs blood work to confirm that his liver functions and white blood cells are within normal ranges: this means that we need to access his port, an event that I fully expect to be nothing short of a disaster.  Part of the preparation in the morning was an application of a topical anesthetic that we hoped would ease his pain. We have learned from our experiences and this time we were prepared with books, movies and other distractions to occupy his mind while the nurse inserted the port needle.

Luisito was laying on his bed watching that atrocious excuse for a movie, transformers, for the 30th time when he finds himself surrounded by myself and the nurse.  We are fully prepared to hold him down and put up with the screams until the port needle is inserted.  I strategically place my hand in his peripheral field of view so he cannot see the needle penetrating his skin and signal the nurse to commence.

The whole event is anti-climatic, he does not even notice the needle going into his skin, he is too busy watching Bumblebee "lubricate" John Torturro.  Perfect.  Well not quite, the nurse chose a 1-inch port needle instead of the half inch and it sticks up above the surface of his skin.  Not a huge problem since it will be removed after the chemo is administered but we do need to be careful that nothing dislodges it.  His blood is collected without incident and it is at this point that Jen decides to mention the needle in his chest, cue the tears.  As I look at Jen in amazement, Luisito calms himself and we are left to wait for the nurse to return with his blood work results.

Another nurse, our outpatient representative, arrives and we take the opportunity to ask some questions that we have written down.  Most questions relate to Luisito's cough, it is still keeping all of us awake at night for a couple of hours, usually between 1 and 3 AM.  We also ask about his bone marrow core results and she goes to check.  At this point I need to leave for a phone interview.

When I return, I can see the nurse setting up the IV pole for his second chemo drug and I ask Jen if we have any answers to our questions.  Her responses are confusing at best so I have to wait until Monday to speak to the Oncologist.

I ask the attending nurse some questions and she does provide some insight but not the answers I seek.  The chemotherapy is administered successfully and without incident from Luisito's point of view but I still loathe the sight of seeing those drugs enter my son's body despite their anti-cancer properties.

After the drugs are administered I help the nurse remove the port needle: there are tears and screams but no where near what I thought.  Not too shabby.

"Daddy, I need to go pee!"
"Sure thing" I say.

I take him to the bathroom and help him to the toilet.  The toilets in the hospital are rather high and without a stepping stool Luisito would miss the toilet.  I let him stand on the tops of my feet and I tilt them upward to lift him.  His pee comes out red and he starts to whine, preamble to a crying fit.  I think the colour disturbs him and I quickly tell him that I wish I had red pee.  I also tell him that he is peeing ketchup and this causes a 180 in his mood; he starts to laugh and giggle and even adds to the joke.  "I will pee on a hot dog", he says to me.  I tell him that is probably not a good idea and I am relieved that a crying spell has been averted.  I'm sure there will be more but not this time, this time laughter prevails.

As we prepare to leave we run into his oncologist and I take the opportunity to ask some questions.  The most pertinent is the results of his bone marrow cores.  He tells me that they are in and the results show that Luisito's bone marrow contains 2% blasts; anything under 5% is considered normal.  I ask again to confirm, "So the cancer is not in his bone marrow?"  The reply is swift, "No, his bone marrow is all clear".  YES!!  Great News. Outstanding News!  Now if we can shake off this cold and just get back to dealing with this cancer that would be great, as great as can be in these circumstances anyway.

I am not done annoying the doctor yet and I ask him about Luisito's spinal fluid, brain and nervous system, "Is the cancer present in any of these systems?"  Again a swift reply, "No".  At this point the doctor points out that even if it was in these systems the treatment would not change but I am grateful that those systems are clear of cancer.

So after 5 hours at the hospital we leave with some measure of good news.  Baby steps, one day at a time, this is what I tell myself as we leave for lunch.  He is incessantly asking for pizza so we head off to the cafeteria only to find that the Pizza, Pizza store is closed.  He takes the news in stride.

I realize that he is growing, everyday, faster than he should be but hopefully these experiences will make him stronger.  We return to the house and take a moment to relax.  Mommy has arranged for a special guest to visit Luisito tonight.  The evening goes well. 

Luis and one of his best buddies, Timothy

As they leave I find myself envious that they can, and I wish this had never happened to my son.  The feeling passes as quickly as it arrives.  It is close to bedtime, there is much to be done and I tell myself that wishing won't change anything.  Eventually this will all pass and my son will have a chance to be a child.

I let myself dream about the future.  In this dream I picture a day when the next two years will be some foggy collection of memories in his past. He will come to me distraught, seeking advice about some little mundane event in his life.  I will listen to him and then say "You beat cancer buddy, I'm sure you can handle this".