16) Exercise in positivity

We've been through quite a bit in the last 9 weeks since E's diagnosis. There's a lot going on including exhaustion, worry, heartache, stress, and E waking us up 2 - 3 times a night because he is generally restless from dusk to dawn. There is plenty of uncertainty and negativity in our lives right now, so I thought I would try a small exercise in positivity and list a few things about my boys that make me smile.

J:

1. how he waves, and yells goodbye to his friends when he's picked up from daycare
2. how he is starting to understand humour and gets a look of pride on his face when he's done or said something funny to make us laugh
3. how he always wants to help out whether we need it or not
4. how he loves to hug and kiss his little brother
5. how he spontaneously will hand a toy to E which makes us think that maybe he's starting to get the hang of this whole sharing thing
6. how he will use a big word in the proper context when we didn't even know he understood what it meant

E:

1. how he loves animals so much and lets out a little squeal and points when he spots one outside.
2. how he smiles and his whole face just beams and lights up the entire room
3. how he starts barking whenever he sees a dog
4. how he is just soaking up language when he'll try to parrot words we say to him
5. how he starts dancing when my wife has her boom-boom-boom radio stations playing
6. how he is so emotive with his little face

15) Stumble #3

In a previous post I had written about E coming down with a fever, and having to stay in the hospital for 2 nights. Stumble #1. A couple of days after that incident, we wound up in emerg in the wee hours of the morning because we were concerned about him having an intussusception. That was stumble #2. This is the story of stumble #3.

We were told at the beginning that there would be some stumbles along the way. Bloodwork would reveal counts that weren't quite right, and treatment would have to be delayed until levels balanced themselves out.

On Tuesday, we were sent in to check E's blood at our satellite hospital, Scarborough Centenary. It was a quick trip: park, blood drawn, leave. They called us later to say that E's results had come back and everything was fine. We could proceed to SickKids on Wednesday for our scheduled appointment, and the beginning of the Interim Maintenance 1 phase. SickKids will send you to your satellite hospital the day before beginning a new phase of treatment to save you a trip all the way downtown if bloodwork shows that one of the markers they watch is not at the correct level.

On Wednesday, we packed up for the drive to SickKids. 1 hour and 50 minutes after pulling out of our driveway, we were in the SickKids parking garage. We made our way up to the 8th floor and had more blood drawn. After blood, we had a brief sit in the waiting room of the Sears Cancer Clinic before we were called in to see our nurse and oncologist. Our nurse measured E's height and weight, and our oncologist talked to us about the Interim Maintenance 1 phase, examined E, and asked us if there were any concerns. Once that was done, we had another sit in the waiting room until we were called to have a dose of chemotherapy administered to our son. Instead of being called to the treatment room, we were called back to reception. Here, our oncologist told us that one of the markers they measure in E's blood (neutrophils) was fine yesterday, but by today had dropped to a level where it is not recommended to start him in the next phase. They suspect that he may have picked up a cold or some other virus.

I completely understand. I want E to be fully ready to start a phase of treatment. I don't want him to start anything if his counts are too low. But I do want things to progress. I want to know that E will be okay. I want our lives to return to some semblance of normalcy. I want to worry about regular parental worries rather than the results of his bloodwork, or how well his leukemia is responding to the chemotherapy. I want.... I suppose that I just feel frustrated. Frustrated that we wasted not one, but two trips to 2 separate hospitals only to be postponed. It's not anyone's fault, it's just one of those stumbles they told us about back at the beginning. E has a few days for his immune system to rev up, and we're going to try again next week to see if he's ready for Interim Maintenance 1. What else can you do but try and move forward?

14) Twins

Even our mothers couldn't tell us apart.

13) Brain of J

I started writing not long after coming home from our stay at SickKids with E. It felt therapeutic to be able put words down and to write about how the experience was making me feel. For the most part, the focus of my writing is about E, and myself. My wife, and eldest son, J are both referenced, but so far, they seem to be minor characters. E's condition doesn't just affect me, it affects the whole family. I thought I would take a moment to write about J, and reflect upon my thoughts and fears about how his 3.5 year old brain is processing his brother's leukemia diagnosis.

J knows that E is sick. We haven't come out and used the words "cancer", or "leukemia" to him, but we've explained to him that his brother is sick and we need to go to the hospital so that E can get special medicine so that he can get better. It is mentally and physically exhausting to care for E. I try to keep spirits up, and will act silly, or look like a fool just to make my kids laugh or smile. After a while, the insomnia, stress, worry, nighttime wake ups with E, hospital trips, etc. just drag you down. I find that on my bad days, I don't have as much patience for J and E that I would have before this ordeal. I just want for the both of them to have as normal and as happy childhoods as they possibly can. I worry that they'll grow up and harbour some sort of resentment or animosity toward me. I'm trying to find the strength. I'm trying to keep life normal for them. I'm trying to keep smiles on their little faces and laughter coming out of their little mouths. I'm trying, but this is unfamiliar territory and I don't know if I'm doing a good job. Ultimately, my biggest fear is that I'll fail them.

I really feel for J during this ordeal. He's at an age where he probably understands more than what we think he does, but he's also at an age where he doesn't have the vocabulary to effectively communicate his thoughts, fears, and stresses. During our initial 9 day stay at SickKids, J was cared for alternately by both sets of grandparents. He missed a whole week of daycare. During the induction phase, we had two weekly trips to SickKids. A couple of times, we needed to get my mother-in-law to pick him up from daycare because we wouldn't be back in time. During this month's consolidation phase, we had three weeks in a row where E was required to have a lumbar puncture, which required us to be at SickKids for 8:30 AM. 8:30 in the morning doesn't seem too bad, but it is very tricky when 1) you have a 3.5 year old to drop off at daycare and the earliest you can drop him off is at 6:30 AM, and 2) your route takes you on highway 401 and the Don Valley Parkway, both notorious traffic hellholes. Something had to give, so we asked family for help. My mother, my mother-in-law, and my visiting-from-BC sister were able to help us out by sleeping over to care for J in the morning, and to get him to daycare. You can only imagine how heartbreaking it was to return from the first scheduled lumbar puncture and hear J say "mommy, you left me" in reference to our early morning exit before he was awake. He seemed to be regressing in some of his behaviours, and he was also trying to sleep in our bed most nights, something he hadn't done in several months. We guessed that he wanted to sleep in our bed so that he would notice us wake up and go with us.

J is a great kid, but he does have some behavioural issues. Similar to myself, he seems to have issues with anxiety and stress. Daycare can be difficult for him, particularly when we drop him off, and during playtime. He seems to have issues when other kids invade what he considers his personal space, and he becomes overly possessive of toys. In both instances he'll physically lash out at the other kids, or scream, or both. At the time of E's diagnosis, we initially thought we may want or have to pull J out of daycare in order to minimize germ exposure to his immunocompromized brother. Staff at SickKids encouraged us to keep J's life and routines as normal as possible, and to keep him in daycare if he was already enrolled. He's been at his daycare for a little more than 2 years, and we love the facility and staff. It may be difficult for him at times, but overall, we feel that attendance and socialization with other children are beneficial to him. There's been a number of recent changes for him at daycare, which I worry is exacerbating some of his behaviours. J is a boy of routine, and he doesn't like it when life deviates from his normal. He has a new teacher in his class, and a number of friends recently graduated and started attending junior kindergarten. On top of that, a new crop of kids has arrived, and I think he feels a little out of sorts due to things being fluid rather than solid. One good thing for him has been his best friend, a little girl, whom I not going to give an initial of her name to respect her and her family's privacy. They have been friends since the beginning, back when he started in the toddler room as 18 month old. They play together every day, and he is very protective of her. Sadly, just yesterday we found out that she will be leaving J's daycare at the end of September. He doesn't know that she is leaving yet, and it breaks my heart to think of him being there without his best friend. I worry if he will understand what it means. Will he think that she's sick or on vacation? Will he start looking or asking for her when she's been gone for a couple of weeks? Will he be sad and upset when he realizes that she's not coming back? Or will the memory of her just fade away until it's as if they had never met? I just want him to be happy, but I also want to protect him from unnecessary hardship. I realize that you cannot control everything in life, and you can't shield your children from each and every encounter they may have with discomfort and adversity in their lives. With our family's recent struggles with E's leukemia, and all of the changes and upheavals in J's routine, his best friend leaving daycare was a life lesson that I had hoped could have been left for another time.

12) Adaptation

They say that there's no guarantees in life, and I guess that's true, but I never imagined that I would be the father of a child with cancer. Nothing ever really prepares you to hear that your child has a prognosis, even if that prognosis is a good one.

We spent 9 days at SickKids and had a revolving door of doctors & nurses coming in and out of our room during our stay. Needles, bloodwork, and checks of vitals were done on E at all hours. Meals were usually based on "I should probably eat something", rather than "I'm hungry". Sleep was a rarity, and when it did come, it happened in fits & spurts, and was usually light. Since I have given up regular coffee, the initial few weeks after E's diagnosis were powered by sheer adrenaline. When our 9 days in the hospital came to an end, I was more nervous bringing E home as a cancer patient than I was bringing him home as a newborn. We returned home and spent a night all together as a family under one roof. I woke up the next morning and remarked to my wife that I felt like no time had passed since we were all together. If felt like the last 9 days had been a collective bad dream, but then reality set in.

Upon returning home, I find that some of the most difficult things to do are mundane tasks. For example, I remember my first trip to the grocery store. I recall navigating the aisles when all I could think of was my son. The words cancer and leukemia were rattling around in my head. Walking around the store felt like an out of body experience, like I was watching myself but not actually there. I became aware of all the other shoppers going about their errands. For them, nothing had changed; for me, everything had changed. I had all of this stress, anxiety, and upset bubbling up inside of me, and here I was in the grocery store, buying food to eat, with no one aware of the upheaval that had happened in my life. At the checkout, I felt hollow when replying "Good thanks, how are you?" to a cashier's inquiry of "Hi, how are you today?". How could I be okay right now? How would I ever be able to be okay again? But the "Hi, how are you today?" is just a social nicety. It's polite to ask, but no one really wants to hear the truth if the truth is less than happy.

It's remarkable how quickly we can adapt to various situations. A short 6 weeks later, and I can now wear my "Good thanks, how are you" mask in public without feelings of guilt that my words are betraying my inner thoughts. I'm not happy about it, but I no longer feel like I'm betraying my son by maintaining a calm disposition. Early on, we were told that we would have to find strength. We would need strength to support E, but also strength to make his and J's lives as normal as possible. And I try. It's incredibly difficult, draining, and exhausting, but I do my best to act silly, and to keep my boys smiling and giggling. A fly on the wall observing our family for short periods may never guess the hell that we have been through. But it's always there. Always scratching at the back of your mind, waiting for the dark & tired times to bring uncertainty and undermine your thoughts. Fvck you leukemia.

11) Yellow submarine

We're now in phase II of chemotherapy, known as consolidation. Phase II for E involves 3 weeks of lumbar punctures, followed by a week of rest, followed by one more lumbar puncture.

We were at SickKids today, back in Cujo's Kids for the procedure. The day got off to a slow start. My wife was up with E at 4:20 AM this morning. I got to sleep in until about 5 AM since I was the driver, but I overslept & my wife had to wake me up. This was our first trip to SickKids in regular rush hour, and it was about what I had expected. Up until today, all trips had been in summer rush hour, which is significantly lighter than what you see from September to June.

Before going into Cujo's Kids, oncology patients get to choose a toy from a treasure box, and this is what E picked out all on his own:

Anyone who knows me, knows that I absolutely adore The Beatles. The Beatles had long been broken up when I was born, but they're a band whose music has always spoken to me. I was quite proud when E chose a Hot Wheels Yellow Submarine! My wife asked me if I wanted to keep it in the packaging as a collector's item. I shook my head, ripped it open, and handed the die-cast sub to E so that he could play. I carried him into the room and held him while the anesthesiologist put E under, then I left him in the good care of the doctors to get his lumbar puncture.

For the second week in a row, the wake-up from the anesthetic was not good. Last week, he cried and screamed. This week, he screamed and cried, and also woke up earlier than he did last week. Patients are supposed to remain lying flat for an hour after the lumbar puncture procedure so that the chemotherapy drug injected into the spinal fluid can disperse properly. He woke up after only 28 minutes, so holding a 16 month old down for 32 minutes while they're bawling and upset is quite the task. Bravo to my wife for climbing onto the stretcher with him to try and calm him down.

10) Bathtime

I have a couple of other posts half-written in my head. I know what I want to say, but they're more about things that happened earlier on, or are more technical in terms of informational content. Lately, I've been thinking a bit more about the here and now, and I've been less inclined to write about the other older things.

Tonight was the first night in a little over 6 weeks that E didn't scream his head off in the bath.

E was always a little guy who loved the bath. He would splash, or play with his bath toys, or just enjoy the warm water.

Something changed after his leukemia diagnosis, and those 9 days in the hospital. I'm not sure whether it was being poked and prodded by needles and nurses, or whether the chemotherapy made his little bum burn, and the bathwater exacerbated the pain. All I know is that after we brought him home from SickKids, he wasn't our little E who loved the water anymore.

Tonight, he was back to his happy, smiling, splashing little self, and it was wonderful to see that side of him again.

9) Goddamn superheroes

One of my first social media posts (a Tweet) after E's diagnosis read:

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

I also quoted it in an earlier post on this blog.

The nine days spent at SickKids were difficult. Not just from the point of view of wrapping your head around the fact that your child has cancer, but also from seeing countless other children in the hospital receiving various forms of treatment. Up on the 8th floor, all the patients you see are either hematology/oncology patients, or burn unit patients. In our section, hematology/oncology, E was one of the younger ones there, but I do recall seeing (and shedding some tears) a baby who couldn't have been more than 2 months old. Most of our time was spent in our room, but when the both of us were at the hospital, we would trade off taking breaks to get out. This helped us keep our sanity, and gave us a chance to get a bit of food even though neither of us felt overly hungry in that initial period. My heart would break on these daily excursions because you would inevitably see children hooked up to IVs or being strolled around in wheelchairs, afflicted by various illnesses or maladies.

I remarked to my wife that the staff, nurses, and doctors must be some extra special people to come in to work on a daily basis and see the things that they see. It's great that a hospital such as SickKids exists, but it's a shame that it HAS to exist in the first place. Later on during our stay, we were chatting with one of our nurses. I was telling her how I have the utmost respect for her profession, having 12 hour shifts, having to switch from day to night, and having to see all these poor babies, kids, teenagers, and families at their absolute worst. She turned the thought around on me and said she is driven by the strength and resolve she sees in so many patients and families, and said that helping us and hearing our story was inspirational. It's......I'm not even sure what is the right word to go here, maybe heartwarming? It's heartwarming to hear that someone finds your story inspirational, when on the inside, you feel like you're using chewing gum and dental floss to barely hold things together.

Goddamn superheroes I tell you.