8) Coffee

Those who know me, know that I like coffee. Those who know me well, know that I arrived late to the coffee game, not actually really drinking it until 2009 when I traveled to Italy with my girlfriend (now wife), and her family. I guess that I had always tried bad, low quality coffee, so I thought that I didn't like it. Across the pond, I tried good, high quality Italian coffee and loved it. Because of that trip, I became a regular coffee drinker.

Those who know me well also know that I deal with anxiety issues. Too much caffeine & anxiety don't mix, so I've always walked that line between enjoying a cup and getting the coffee jitters.

To say the least, my stress and anxiety have been through the roof since E's leukemia diagnosis, and since this happened, I haven't had a single drop of regular coffee. I do enjoy my daily cup, and I find it comforting, almost like a warm hug in a mug without sounding too cheesy. I've switched to decaf so that I can keep up with my familiar daily routine.

7) A step foward, a step back, a jump ahead, and a stumble (celebrate the small victories!)

Hm. It's been an interesting week.

On Monday, E finished the induction phase of his treatment. The 29 day course of dexamethasone was complete, so his insatiable appetite would start to taper, and his steroid-induced mood swings would start to go away.

On Tuesday, we were told that the preliminary results of his blood work tested negative for leukemia cells which is a good thing. Further results were still forthcoming, and this would determine whether E remained in the standard risk classification, or whether he would be bumped up to high risk. The prognosis is the same regardless of standard risk or high risk, but high risk is a more intensive treatment plan to beat back the leukemia.

On Wednesday, E woke up with an elevated temperature. 37.2°C. 37.5°C. Then 37.8°C, which is the magic number for a fever. Fever can be a serious condition for cancer patients, so we were told to call SickKids if E gets a fever. We called & were told to bring him in. We had a slow drive down the DVP, so we didn't arrive until about noon. We checked in to emergency, where we were fast tracked into a room. Nurses arrived to do vitals, and to draw some blood. Almost right away, we were told that they were going to admit us, and we should only be in emerg for 1.5 - 2 hours. I guess things were unfortunately busy up on the 8th floor, and all of the rooms were full, so they did not have a place for us. We waited in emerg until about 6 PM, when transport arrived to bring us upstairs. There was no room in 8A, so we were placed into a room in 8B, which is typically the ward for patients undergoing bone marrow transplants. My mother-in-law picked up J from daycare, and I returned home later in the evening. My wife stayed over at the hospital and had a difficult night, due to E's feeding schedule and the nurses' vitals schedule not meshing. She didn't get much sleep at all.

On Thursday, I had to arrange daycare pick-up coverage for J, and a ride home for my wife. My parents were able to help out. My mom came down on the train, and I had a few errands to run, so I didn't make it in to the hospital until almost 2 PM. Later in the day, we were called by E's oncologist to let us know that the minimum disease residual (MDR) test had come back negative. This was wonderful news, and it allows E to continue in the standard risk bracket in the consolidation phase of treatment. This news does not mean that E's cancer is gone, but it does mean that the number of leukemia cells in his body is below our ability to detect them. Induction had achieved its goal! Blow it out your ass, leukemia!

On Friday, I woke up for the third time around 8am, and I had a much better overnight than my wife had the previous evening. E had his vitals checked at midnight, 4 AM, and 8 AM. His feedings lined up perfectly with his vital checks, and he went back to sleep easily. One of the oncologists arrived to examine E, and he found that there was some tenderness in E's right side. We were scheduled to go have an ultrasound at 1:45 PM to check things out. The ultrasound came and went, and we returned to our room to wait. And wait. And wait. At this point, my brain had become my own enemy, and I was feeling numb and sick to my stomach, having convinced myself that the reason for the long wait to hear results was that they had found another type of cancer in E. Finally, around 5:30 PM, we were told that E had something called an intussusception, where part of the intestine folds into another section of intestine that is next to it. It can be potentially dangerous condition that can ultimately lead to an intestinal tear and infection of the lining of the abdominal cavity. The doctor told us that E's intussusception had resolved, and that we would be discharged, but we needed to watch for a number of symptoms like vomiting, "jelly stool", bloody stool, or intermittent crying. We were also told that we would have to bring him back to SickKids if the pain had not subsided in 24 hours.

On Saturday, E had not exhibited any of the symptoms, but he still had tenderness in his right side. We called SickKids & spoke to an oncologist. We were told not to worry about the tenderness, but that we should call back if he experienced any of the intussusception symptoms.

On Sunday, E woke us up at 12:30 AM. He was crying intermittently, and did not want to seem to settle down. We again called SickKids and decided to bring him in to emerg. We gathered up overnight bags for ourselves, as well as food, clothes, and the general diaper bag contents for E. Because it was the middle of the night, we also packed things for our older son J, because he would have to come with us. We loaded everything and two kids into the car, and by 1:15 AM, we were off, and arrived at SickKids near 2:00 AM. Now, when you're an oncology patient, you get the five star VIP treatment in the ER. The oncology doctor speaks to ER to let them know we are on our way, and we get to skip any lines, and are fast tracked into a room. Another ultrasound was done, along with blood and urine tests. The ultrasound showed no intussusception, but it did indicate some inflammation in the cecum, likely caused by the harsh chemotherapy drugs during the 29 days of induction. We were again discharged, and were told that he just might need a bit more time for the inflammation to subside.

All in all, quite a week with much more time spent in the hospital than we had originally anticipated. A positive takeaway includes E's appetite and demeanour returning to normal after stopping the steroid. He is much more happy and smiley, and we're quite happy to see his wonderful personality shining through. The absolute best though, is the MDR test coming back negative, showing that the level of cancer cells in his blood are below detectable levels. Early on, one of the oncologists told us that we needed to celebrate the small victories, and this is one that definitely deserves a hurrah!

6) Astrology & destiny

I've always liked astrology and horoscopes. I don't believe them, and I don't see how the positioning of the sun, stars, and planets at the time of your birth has a determination on your personality, but I do find them interesting.

I'm also not the type of person who thinks things happen for a reason. Especially now. There is no possible reason why a 15 month old, or any other child would get cancer. Sometimes good things happen, sometimes bad things happen. Things happen because they happen.

How does this all fit together? Why am I talking about astrology & destiny when my son has leukemia? My thoughts were racing and swirling as they often do these days, and I noticed that E's cancer diagnosis was on July 22nd, the last day of astrological Cancer. I'm not hung up on this, nor am I reading too much into this. I don't believe that the forces of the universe, or the alignment of the sun and stars conspired to cause E to get leukemia. I don't believe there's any significance behind it, but I do find a cancer diagnosis on the last day of Cancer to be weird conincidence.

5) SickKids Part II

The door to Cujo's Kids where the lumbar puncture procedure takes place

The hospital stay was awful for E, and equally, if not more awful for us. The first few days, E needed to have his blood drawn and tested three times a day. There was a revolving door of doctors, nurses, and support staff coming and going from our room. There is an incredible amount of information thrown at you in the first 48 hours. Between names, faces, drugs, side effects, tests, etc., there is little chance to keep everything straight and filed into memory. We were given a binder, the "Children's Oncology Group Family Handbook" that has everything we need to know about leukemia, tests, treatments, procedures, drugs, etc. Basically a "Leukemia For Dummies" book if I may be so blunt. Our nurses, who were amazing, checked E's vitals every 4 hours: temperature, blood pressure, and heart rate. He hated it, and screamed every single time. We also had to keep track of input/output. We had to record everything we fed him, and our nurses came in to check and weigh all of his soiled or wet diapers. They needed to make sure that he was excreting a certain percentage of everything he ate and drank. If he fell below a certain threshold, he needed to be administered a drug that would increase urine output.

During his stay, he had to have an IV. The problem with an IV and babies is that they tend not to mix very well. This proved true for E, who had to have IV his done five times. 5 times, the IV team had to come up to our room. 5 times we had to help hold him down. 5 times we had to try to soothe him while they poked his skin with a needle to look for a vein. 5 times where we had to listen to his screams and wish that we could do this in his place. The last time he broke his IV was a Friday, and the nurses said that he could just go the weekend without it as long as he maintained a certain level of fluid intake. That proved to be a blessing in disguise since the doctors allowed us to break quarantine and take him outside the hospital for a walk in his stroller on a day pass. On Saturday July 29th, we walked up to Queen's Park. On Sunday July 30th, we walked down University to Queen Street and back. Both trips would have been much more difficult, if not impossible if we had to drag an IV machine along with us.

We were told that at some point during our stay, E would be taken down to the operating room for surgery so that he could get a "port". The port is a device that sits underneath the skin of his right shoulder, and has a tube that connects to the jugular vein in his neck. A special needle punctures the skin and goes into the port. This way, cancer patients can have blood drawn, and chemotherapy administered without the need of having an IV insertion. Twice we were scheduled to have the port surgery, and twice we were bumped. I absolutely completely wholeheartedly understand being bumped so that another child who has a greater need for surgery can have access to the OR. That being said, it is frustrating to have your child bumped after a period of fasting when they're hungry and upset, and they're too little to understand why they can't have food.

On day 1 of chemotherapy (Monday July 24th), E was taken to Cujo's Kids and was put under general anesthetic for a lumbar puncture. I was allowed to carry him into the room and put him down on the stretcher. At this point, E was screaming because he knew that something was about to happen. I'm sure it's terrifying to look around and see a room full of complete strangers wearing surgical gowns and masks. They put a little non-rebreather mask over his face and turned on some sort of gas, and after a couple of breaths, he had relaxed and slipped into unconsciousness. I gave him a kiss on the cheek, and made a teary eyed exit to join my wife in the waiting area. Bone marrow was taken so that it could be tested to determine E's specific type of leukemia. The procedure drew some spinal fluid to test for evidence of leukemia infiltration. They also administered a dose of Intrathecal Cytarabine (chemotherapy drug) to the fluid in the spinal column and surrounding the brain to treat or prevent leukemia depending on whether it was present or not. The results took a couple of days to come back, but E tested negative for leukemia in the spinal fluid which is a good thing. The test on the bone marrow extracted from the lumbar puncture also took a couple of days, and it revealed that E has "standard risk B-cell acute lymphocytic leukemia", also known as B-ALL. This is the most common type of childhood leukemia, and also the easiest to treat. Later in the day, also on day 1, E received a dose of Vincristine through his IV drip. Day 1 was one of the days where both my wife and I stayed at the hospital with E instead of just one of us.

E was also given Dexamethasone, a steroid, on a daily basis to help counter some of the negative side-effects of the other chemotherapy drugs he is taking. I will address chemotherapy and the drugs in a future post.

On day 4 of chemotherapy (Thursday July 28th), E was given a dose of Pegasparagase. Day 4 was another day where both my wife and I stayed at the hospital with E instead of just one of us.

On day 8 of chemotherapy (Monday July 31st), E finally made his way to the OR. He had his port installed, had another lumbar puncture, and was given a dose of Intrathecal Methotrexate into his spinal fluid. The spinal fluid was once again checked for the presence of leukemia, and once again, leukemia cells were not detected. Later in the day, he had another dose of Vincristine, and then we were discharged to go home.

I was more scared going home with my son as a cancer patient than I was bringing him home for the first time as an infant.

4) Haircut

Today is August 14th, and day 22 of induction. We were at Sick Kids again today for blood work, and chemotherapy as long as the blood results came back okay. The doctors were happy with E's white blood cell, hemoglobin, neutrophil, and platelet counts, so the chemotherapy went ahead. Later on in the day, we had a dental consult for E which also took place at Sick Kids.

Lately, E has been pulling at his hair. The doctors tell us that it is normal, and older kids who can speak, tell them that their scalp tingles. Tonight, after returning home from our appointments, E was again pulling at his hair, and it started coming out in clumps. I thought I would be more upset when he ultimately started to lose his hair, but surprisingly, I felt nothing. My wife said that it's time to shave his head, so we got the clippers, attached the #2 guard, and gave haircuts to both E, and his brother J. I was hesitant to clip it, but not because of an emotional attachment to his hair. He had a rough day today with plenty of crying and unhappy moments, so I partially wanted to spare him more grief. I was also worried that he would get so worked up that we would have to stop, leaving his hair in a partially cut mess. Things went well, and both E, and J look pretty cute with their new hairdos.

3) SickKids

I don't have enough good things to say about SickKids and everyone that works there. I've said this before, and I'll say it again:

"The nurses, doctors, staff, and volunteers who work at SickKids are goddamn superheroes, and I'll fight anyone who says otherwise."

E was in the hospital from July 22nd, 2017 to July 31st, 2017. The first doctor we saw after being admitted reiterated a number of things to us:

1) this wasn't our fault; there was nothing we did, or neglected to do that caused E.'s leukemia
2) there's no way we could have guessed he had leukemia, so don't feel like we should have known or brought him in earlier
3) this is a very treatable disease, and their goal is to cure him

My wife stayed in the hospital with E on the first night. I returned home with my father to stay with my son J who was being taken care of that initial day by my mother. My mom & dad graciously took some clothes & supplies to my wife, dropping them off at SickKids on their way home. My parents returned the next day to watch J so that I could return to the hospital to be with my wife, and E. I no longer recall the exact sequence of who did what, but J was cared for by my in-laws and parents over the next 9 days. My wife and I alternated spending nights at the hospital with E, but we both stayed on the 24th, and 27th because they were days where E received chemotherapy.

On the second day we were there, our nurse informed us that we would unfortunately have to be quarantined in our room because E had a runny nose. They drew blood to culture for bacterial infection, but it eventually came back negative. They swabbed his nostrils and later confirmed that he had rhinovirus. We both began to feel a little squirrely being confined to the room, and we swapped turns taking breaks to try and retain some normalcy. There was a playroom on the 8th floor that E had loved being in before we were quarantined. We grabbed some books and toys to bring to our room so that E would have something to keep entertained. There was also a TV that had more channels than I pay for at home, and there is often something on Treehouse that will catch baby E's attention. Failing that, the hospital provides free Wi-Fi, so we could always cue up Go Jetters, or something else that E likes on YouTube.

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Time at the hospital moved both slowly and quickly if that makes any sense. In our time at the hospital, I felt quite emotional; tears, or a full on cry were never very far away. I also felt numb, withdrawn, and detached. On my way to get some food that I knew I needed, but did not want, I recall walking down the corridors to the elevator and feeling in a daze. Our lives had just been completely upended, and reality seemed off kilter. The entire time spent at SickKids was surreal. I felt as though i was watching a movie about my life. The story kept getting worse and worse, and I was powerless to fix or change anything. My son's leukemia was the first thing I thought about in the morning, and the last thing I thought about before falling asleep at night. It also preoccupied my thoughts during the day. Meals usually came from the hospital cafeteria, or more often, the onsite Subway. My mother made & sent some stew, and my mother-in-law sent some pasta & crusty bread.

2) Context

Allow me to rewind so that I can frame this waking nightmare with a bit of context.

For several months, our infant son, E, had problems swallowing. Puréed foods were okay, but anything with a bit of texture, or lumps caused him to gag and sometimes vomit. Our family doctor referred us to a pediatrician. We visited the pediatrician at the end of June, and she referred us to another specialist who ran a pediatric chewing and swallowing clinic at a nearby hospital. On July 21st, we visited the pediatric specialist who thought E looked a little pale and suspected that he might be anemic, so he ordered some blood work. We also mentioned E's colouring. For a little while, we had noticed that E was starting to have a slight yellow tinge to his skin, but we attributed the colour to the sweet potato, squash, and carrots that he usually had mixed in with his lunches and dinners, so we didn't think too much of it. Before we left the clinic, we stopped at the lab with a requisition and got some blood work done.

The next morning, July 22nd, a Saturday, our pediatrician and the pediatric specialist both called our house before 9:00 AM, telling us that there had been some anomalies found in E's blood work, and that we should get to SickKids right away for further testing. Our pediatrician was the first to call, and I remember her talking about blasts in the blood, but when pressed, she would not outright say what she thought it might be. Knowing that blasts usually means cancer, I started to experience the dizziness, and muffled hearing that comes on when I'm having a panic attack, so I finished the conversation sitting on the floor.

At that point in time, my wife and I were both anxiety ridden messes, so I called my parents who live about an hour's drive away to ask if they could come out so my mom could watch our older son J, and so my dad could drive us to SickKids. Waiting for my parents was agony, and in the meantime, we received a second phone call, this one from the pediatric specialist. My wife took that call, and he was a little more open with us than the pediatrician was. He did not tell us what it was with absolute certainty, but he said in cases like this, it could be cancer, and that we needed to get to SickKids right away for further testing. I started crying, and my wife suggested that I leave the room so as to not upset our older son, J. While composing myself in our room, I overheard J asking my wife "what's wrong with daddy?", to which she replied "oh, it's okay, he's just not feeling well".

My parents arrived, and my mom stayed with J My father, my wife, E, and I set out for SickKids. We turned onto Elm St. to get to the parking garage, and I recall thinking to myself that this was a real life nightmare on Elm St. In the ER, we were fast tracked, but first went to a room so a nurse could weigh E, and get some other vitals. We then proceeded to registration, and were then led down a hallway to an observation room where we would wait to see the doctor. We were put into room 15, and I remember thinking it was good luck because E was exactly 15 months old that very day. Surely being exactly 15 months old and being put in room 15 was a sign that there had been something wrong with the initial test, and that everything was going to work out fine, right? We had a revolving door of doctors and nurses come into the room. They were asking us a number of questions such as "is there a family history of cancer?", and "has he had a persistent fever that would not go away?". More blood work was done, and we sat there waiting.

A few hours later, a doctor, with 3 or 4 of his colleagues, entered our room to break the news to us that our little man had cancer. I remember getting a quick hug from my dad, then hugging my wife. The both of us held each other and cried. I recall sobbing "What the fuck? What the fuck?" over and over.

Shock. Horror. Numb. Broken. Devastated. This came out of nowhere. He seemed to be a normal, happy kid. Sure, his skin was a little bit yellow as of late, but that must have been due the carotenoids from all the squash, sweet potatoes, and carrots he loves to eat. Sure, he had been a little bit more fussy in the past 3 weeks, but must have been due to the fact he was cutting all four of his incisor teeth at the same time. Who wouldn't be a bit extra grumpy? He had boundless energy, was always on the go, we hadn't seen a persistent fever, and no one in either of our families had leukemia or any other blood disorders.

A wonderful social worker came in to speak to us, and he brought a few toys for E. He assured us that childhood leukemia is not our fault. It wasn't something that we did, or something that we didn't do. They're not sure how, or even why it happens in some individuals, but it seem to just be random and a case of shit luck. An oncologist stopped by to examine E, and speak to us. I believe E's prognosis and course of treatment was discussed, but due to the shock of the diagnosis, I only recall bits and flashes of what transpired.

Not long after speaking with the oncologist, a different oncologist arrived with transport, and took us up to the 8th floor where we would be spending the next number of days.

1) The worst day of my life

"Your son has leukemia."

I don't even remember if that was the exact phrase used by the doctor, who, flanked by 3 or 4 of his colleagues broke the news to us in the emergency room at Sick Kids. After those words, everything was a blur, and time seemed to stand still for the next 10 days.