The Beginning

DADDY:

Hello everyone.  Jen and I have decided to start this blog to keep everyone up to date on Luisito's condition.  We will be taking turns writing and although I am sure you will be able to distinguish our tones and writing styles, Jen has asked that we identify ourselves.  Therefore, at the beginning of every entry you will see either my name or hers.  It is my hope that this blog will answer your questions as well as provide some insight into our new "norm".  Since I was the one that took him to the hospital visit that began this upheaval to our lives, I will begin.


2:20 AM May 16, 2012

Luisito (Luis IV) woke up coughing.  He had a bad cough for close to 3 weeks and night time was the worst.  This night however was different: I told myself that if the coughing continued I would take him to emergency so that they could give him a chest X-ray as was recommended by one of the doctors who had previously seen him.  At 5 AM I decided to take him to Hotel Dieu.  Upon arrival they took him into triage and began to assess him.  I must admit that at this point I was more annoyed than concerned.  I was scheduled to do a guest lecture for a professor and I did not relish the thought of being half asleep for the whole day and to top everything off I was fighting a stubborn summer cold.

Munchkin was on a stretcher doing his best; he must have been a little groggy because he took a tumble and smacked his head off a shelf igniting a crying episode. It was the kind that makes you wonder if parenthood was a good idea.  After a short while they gave him some oxygen via a nebulizer.  I was still groggy and half asleep at this point when the staff finally called us for the X-ray.  When it was finished I insisted on looking at it and I noticed a lot of white.

7:45 AM

"He has an enlarged thymus, it's interesting so we are going to have the radiologist look at it.  I wouldn't be overly concerned as this is quite normal in children but we want to be sure" said the doctor.  After what seemed to be an eternity the news came back from the radiologist that there was no way this was his thymus and we were being transferred to Met hospital.  Ok I thought, this is just going to take longer than usual: the thought of a tumour had still not entered my mind.

After arriving at Met and getting settled in we were shuttled to the CT machine.  I remember the tech mentioning that Luisito needed to be perfectly still for the test and that if he couldn't manage that they would knock him out.  It turned out that fate lent a helping hand here because he fell asleep.  After the CT we were taken to the pediatric wing for more waiting.

The doctor finally called us into his office and told us that there was a large mass present in his chest and that we were being transferred to London.  A flurry of questions followed, "Is it cancer?  Is it benign?  Has it spread?  How long has he had this?  Will he survive?"  The response was the same to all of them -  "I cannot tell you because I don't know".  We were then told the mass was 700 mL in volume.  It had compressed his left lung so much that you could barely see it on the X-ray.  It is close to his heart, enough to move it, but not close enough to severely restrict its operation.  It has also grown to such a size that it has displaced his liver to a noticeable degree on the X-ray.

I was informed that Luisito would need an IV: what I did not realize was the ordeal that stood between us and insertion of the IV would leave its mark on my memory.  I have never heard nor seen munchkin so terrified or scream so loud.  The reality of what was happening sank in right then and there and the only thought I had was that this was a good as it was going to get for a while.

The only bit of good news at this point was that we were taking a helicopter to London although it crossed my mind that the seriousness of his condition warranted the lavish mode of transportation.  Nevertheless, Luisito was very excited and so was I!  I had always wanted to ride in a helicopter.  The flight was uneventful except towards the end when the crew was positive that Luisito was going to lose his lunch but thankfully this did not happen.

4:30 PM

Arriving in London was an intimidating experience.  I had always heard that London was the place to be if you had cancer but I never thought I would walk the halls of this facility.  We were quickly admitted into the pediatric emergency room and brought to a small room for more waiting.  Luisito's mood during this whole time was great. Perhaps because the mind of child is so resilient or simply out of ignorant bliss:  I was grateful regardless.

After yet more doctors and more questions we finally met the oncologist.  Any hopes of a non-cancerous benign tumour were dashed instantly when she began to talk about the treatment protocols.  I was so stunned that I had to interrupt her and ask, "You mean it's cancer?".  She looked shocked and said yes.  The look on her face was one of surprise, as if to say "They haven't told you?  It's so obvious".  This really pissed me off because in my mind that meant that the pediatrician in Windsor knew and decided to wash his hands of us.  I hope I am wrong about this but I have learned to trust my instincts.

I asked the doctor if they were going to operate to remove it.  Since these events began to unfold the thought of them remove the tumour consumed my mind.  I am told "no".  They can't.  The tumour has grown to envelop too many blood vessels in the same way that batter covers chocolate chips in a cookie.  I am told that this type of cancer, if it is what they think it is, responds well to chemotherapy.  I ask how long this cancer has been alive robbing my son of nutrients and the answer floors me, 2-3 months.  I don't think I could grow my gut by a liter in 2 months.

9:45 PM

After what seemed to be an eternity we were finally transferred to our room.  The ordeal for the day was not yet over.  I was informed that he needed blood drawn every 6 hours and that the IV could not be used for this purpose.  More screaming lay in store. 

May 17, 2012 2:00AM

The little sleep I managed to get was interrupted by some nurses who had entered the room to draw some blood.  Luisito was sound asleep and I dreaded the thought of disturbing him.  I watched him for just a moment, just long enough to form a peaceful image of him that I would use to keep it together during the next moments of time.  Twelve milliliters, that's what they needed, not even a tablespoon.  I think I can spit more than that.  It took 10 minutes of poking and screaming to get it.  Twenty minutes later he was asleep.  My own sleep was still elusive and it would be another 2 hours before my tiredness would calm the storm of thoughts in mind.

May 17, 2012 8:00AM

More blood tests, more screams.  Good morning Luis.  No, it wasn't some crappy dream, munchkin has cancer and you are in London.  The cobwebs are still with me but munchkin and the nurses need me to keep things calm.  Today is going to be a big day, two procedures in one surgery, a biopsy whose products would help pathologists identify the cancer and two bone marrow samples to see if the cancer is in his bone marrow.  More doctors to meet.  More questions to answer.  More forms to sign.  You read them and you have even more questions but definitive answers seem elusive, just the nature of the situation I suppose.  No definite diagnosis yet.  Hopefully by Saturday. 

After all the blood tests are done they are ready to take munchkin into surgery.  We are told that the size of the mass in his chest has increased the risk of death in what is typically a simple procedure.  The problem is that when an incision is made into the chest the lungs collapse and given the size of the tumour and the pressure it exerts on the surrounding structures, the risk of puncturing a lung with the surgical tools is higher.  Perfect.  The doctors seem confident that they can succeed so we place our trust in them and wait.

One and half hours later we are in the recovery room and munchkin is coming out of it.  In addition to the IV in his right hand, he is sporting one in his left hand.  The surgical team also finds a significant amount of fluid in the space between his chest and lungs so they insert a tube that protrudes from munchkin's body at the lower end of his left rib cage.  We are told the tube will need to stay in for a couple of days.  Luisito's mood is still good - a small bit of solace during this craziness.  His appearance however looks rather ragged.  He is connected to all manner of tubes, he is tired and I imagine he is also full of questions.  He is not yet asking any of them and I am hopeful that the bliss of childhood will continue to shield him from this affair until we ourselves have some answers for him.

Our friends and families have been here in a show of strength and solidarity.  I am amazed at how quickly their support comes.  It's the little things they do that really help you through this and once again I find myself grateful for the little things.

Back in our room things are calm and munchkin is just a child again: the drugs are wearing off and his youthful vigour is returning.  Peace, at least for now.  More meetings with doctors who try their best to explain things.  The staff is incredible.  People here seem to love what they do.  They are caring, professional and understanding.  A rare breed indeed.  Their dedication and empathy is encouraging and I am confident that we are definitely in the right place.

More blood tests, more screams.  Lather, rinse, repeat.  Another 2 AM blood letting, I am dreading it and I know that sleep will elude me until after that episode completes. 

May 18, 2012 8 AM

I had plans for today.  I was going to go on a long bike ride: out to LaSalle then on to the riverfront and back 40 km in total.  Not a bad start.  Instead, we are told that Luisito's chemotherapy is set to begin today and the last of the trauma surrounding the blood tests is near.  Luisito will undergo a round of surgery for two procedures.  The installation of a "port" and a spinal tap that will start his chemotherapy.  I will try to describe the port.  It is small, cylindrical and made of metal, probably stainless steel.  It has a height and radius of approximately 1 cm. In the center is a hollowed out circular section: in this section sits a silicone like piece of plastic.  On the outer circumference is a nipple where a plastic hose is attached: the plastic hose has a metal guide wire that I assume helps to stabilize the tubing once it is in the body.  The port is installed surgically: the hose is inserted into a vein and the metal piece is attached to a rib to prevent it from moving.  The entire device rests just underneath the surface of the skin.  Special "port needles" are then used from outside the flesh and they last about a week before they need to be changed.  No more searching for veins at 2AM, no more screaming kid and maybe a chance at sleep.

1 PM

The surgery goes well again.  The doctors are surprised with Luisito's resiliency: a child with this type of mass should not be as active as he is and furthermore, they should not be able to lay down. We are told he needs another CT scan to help determine if the cancer has spread.  Off we go.  The scan goes well.  There is a lot of waiting involved and during these waits I start to take in my surroundings.  There are sick people everywhere.  There are kids crying, they are probably in pain and scared.  I find the respect I have for those who work here growing, these people must have nerves of steel.

4 PM

The staff want an ultrasound to supplement the CT scan.  My mind races.  What did they see?  Why do they want another view?  Has it spread?  No answers yet, still waiting.  Jen is busy tending to Julien.  I accompany Luisito to the ultrasound, he is still in good spirits.  Amazing, the child is so strong.

5PM

Back in our room.  One of the oncologists helping Luisito is here and wants to talk.  We follow her into a room.  A lot of information is given.  Preliminary results suggest that the cancer is not in his bone marrow: final confirmation will need to wait a week.  It is also not in the spinal fluid, that seems definitive for now.  They do not know if it has spread to other areas of his body but we are told that the treatment approach is the same.  The diagnosis is Acute T-Cell Lymphoblastic Lymphoma.  The success rate for this disease is about 80 to 90% in children, in adults it is 45 to 50%.  We are hopeful.

8PM

The port is working as it should.  The blood work is now just a minor inconvenience for Luisito.  Munchkin has had a long day and we sleep peacefully.  He even sleeps through the 2 AM nightmare.  I can finally rest and I do.  Tomorrow will be a surgery free day but chemo starts.  I anticipate an early start to the day.

May 19, 2012 6:45 AM

I was right, an early start.  Is my cold feeling better or is it just the ibuprofen?  I am not sure and I don't care.  Things start off well.  No incidents last night and I got some sleep.  Munchkin woke up in a great mood, gotta love that kid.  He seems to be winning over the hearts of the nurses and doctors, "he is so polite and smart", we are hearing that from more of the staff.  Chemotherapy starts today.  I have read up on the drugs and I am apprehensive but there is no alternative.  He will just have to endure the pain and suffering.  A raw deal if I ever heard of one. 

A friend described chemo like this: "it's like throwing somebody in a fire and praying the cancer burns before the patient does".  The brutality of this statement does not seem like an exaggeration as I read the side effects list.  The family is here and we receive news that we are being moved to a larger room.  The generosity of friends and family has filled the room with gifts, food and just about anything else we need. To all who offered and gave help, we are grateful.

My son's pee is now considered toxic and I need to wear gloves when I change his diapers or handle his urine.  We also need to monitor his fluid input and output.  This is just the tip of the iceberg.  We will need to be aware of his blood cell counts.  We are told the steroids, which are part of his treatment, will affect his mood.  This makes me laugh because on top of everything else, my son will have "roid rage".  I hear the prayers of family in the background as I write.  Maybe he will listen, he might even say "Yes".  I end the day with some optimism.  I have plans to go outside tomorrow for some fresh air.  It's been a while.