Yes, the title of this post is a nod to the sitcom Friends.
We were driving southbound on Nielson Road on our way to our satellite clinic for E's bloodwork. A flash of movement from the left hand side of my vision made me quickly step on the brakes. There's a plaza on the northeast corner of Nielson/Ellesmere that contains a few fast food outlets, a supermarket, and a dollar store. A man dashed out of the parking lot and ran onto Neilson Road into traffic. He's lucky that I saw him out of the corner of my eye, otherwise I probably would have hit him with the car. Right behind him, in pursuit, was an officer from the Toronto Police. Traffic came to a stop, the sketchy man ran to the other side of the road, then doubled back, running in between cars behind us. My initial thoughts were about whether I could help. Should I move the car to try and block this man? Should I get out, and try to help the officer? Once he was behind us, I quickly came to my senses. I didn't know what was going on. This man could be dangerous - he could have a knife, or a gun. Best to get out of there. The light Nielson/Ellesmere light was still green for me, so I went through the intersection, and turned into the hospital parking lot.
With the excitement for the morning over, it was time to get down to business, and get E's appointment underway. The appointment itself wasn't overly exciting. It was just bloodwork; no chemo that day, so his port didn't even need to be accessed. A quick checkup from our wonderful nurse-practitioner, and then a finger poke to get some blood by our equally wonderful RN.
Later in the day, we received a call from the satellite clinic to report that E's counts were up yet again. Particularly his white blood cells, and neutrophils. He was in the middle of fighting a cold, so that would partly explain the higher levels, but our nurse-practitioner said that SickKids would be calling with instructions about bumping up his dose of chemo again. A little bit later, the phone rang, and it was our contact-nurse from SickKids. She said that E's oncologist had looked at his results, and his weekly dose of methotrexate would be bumped up from 4 pills to 5 pills.
So that's it, that's where we are right now. Just trying to work out the right dose of chemo to keep E's levels from going too high, while also not overdosing him to the point of him being neutropenic.
2018-10-26
2018-10-22
76) Two word sentence
AboutKidsHealth.ca has an article about the neurocognitive effects of leukemia treatment on a child. Neurocognition includes "language, memory, concentration, and ability to grasp new concepts". For the past week or two, I've been worrying that E may have a neurocognitive delay, specifically in language.
E is a smart little guy. We can show him flash cards of numbers from 0 to 10, and he will correctly verbally identify all of them. He knows colours, knows some shapes, and he has a lot of words, but he hasn't been putting them together in short 2 or 3 word sentences. E has a cousin who is 3 months older than him. I know it's not reasonable to directly compare them because at that age, 3 months is significant in terms of development. I'm not sure that E is at the language level his cousin was at, when his cousin was 2-and-a-half, but he has been recently starting to tell us when he's hungry instead of us guessing.
Fast forward to earlier this evening when I was giving E his bath. He had every bottle of soap, shampoo, conditioner, and bubblebath in the tub with him. He was lifting them up, one-by-one, onto the side of the tub, and we were counting them together. Eventually the water started to get cool, so I had to fish him out of the tub against his will. He was thrashing & yelling, trying to get away from me, but I was talking to him, telling him that the water was cold, and we were going to go and get dry. Out of nowhere, he yells "NO DRY!". I repeated my phrasing to him several more times, and each time, he responded to me with a clear "NO DRY!".
He actually made a two word sentence! I know it was what he was thinking because his thrashing and squirming told me that he was not ready to leave his bath. Hopefully it's the start of a breakthrough, and the little sentences start to increase exponentially. Still, it should be something we bring up with his oncology team in case he needs a little bit of help to get where he needs to be.
E is a smart little guy. We can show him flash cards of numbers from 0 to 10, and he will correctly verbally identify all of them. He knows colours, knows some shapes, and he has a lot of words, but he hasn't been putting them together in short 2 or 3 word sentences. E has a cousin who is 3 months older than him. I know it's not reasonable to directly compare them because at that age, 3 months is significant in terms of development. I'm not sure that E is at the language level his cousin was at, when his cousin was 2-and-a-half, but he has been recently starting to tell us when he's hungry instead of us guessing.
Fast forward to earlier this evening when I was giving E his bath. He had every bottle of soap, shampoo, conditioner, and bubblebath in the tub with him. He was lifting them up, one-by-one, onto the side of the tub, and we were counting them together. Eventually the water started to get cool, so I had to fish him out of the tub against his will. He was thrashing & yelling, trying to get away from me, but I was talking to him, telling him that the water was cold, and we were going to go and get dry. Out of nowhere, he yells "NO DRY!". I repeated my phrasing to him several more times, and each time, he responded to me with a clear "NO DRY!".
He actually made a two word sentence! I know it was what he was thinking because his thrashing and squirming told me that he was not ready to leave his bath. Hopefully it's the start of a breakthrough, and the little sentences start to increase exponentially. Still, it should be something we bring up with his oncology team in case he needs a little bit of help to get where he needs to be.
75) Half-life
Today, E is 2-and-a-half. 30 months. Having been diagnosed at exactly 15 months of age, today is kind of like a cancer solstice for him. He's now spent equal parts of his life as a little boy, and as a little boy with leukemia. If I want to split hairs about it, he's actually had cancer for more than half his little life because he had it for an undetermined length of time before it was diagnosed.
But for all intents and purposes, nothing really changed in his, or our lives until July 22nd 2017 when we received that horrible news. Tomorrow will be 50% plus a day, officially more than half of his life. This is a fact he doesn't know, or understand, but I do. E's doctors say that he won't remember the earliest, worst parts. He will remember later hospital visits for bloodwork & a bit of chemo, because he will be 4-and-a-half when he reaches end of treatment. I know that for me, this is something I will never forget. I've cried, I've yelled, I've been a wretched miserable cow. I've lost sleep, I've been in states where all I want to do is sleep, and I've questioned the purpose & meaning of EVERYTHING. Today is not a milestone to be celebrated, but it feels significant, at least to me, and I believe that it deserves to be noted.
But for all intents and purposes, nothing really changed in his, or our lives until July 22nd 2017 when we received that horrible news. Tomorrow will be 50% plus a day, officially more than half of his life. This is a fact he doesn't know, or understand, but I do. E's doctors say that he won't remember the earliest, worst parts. He will remember later hospital visits for bloodwork & a bit of chemo, because he will be 4-and-a-half when he reaches end of treatment. I know that for me, this is something I will never forget. I've cried, I've yelled, I've been a wretched miserable cow. I've lost sleep, I've been in states where all I want to do is sleep, and I've questioned the purpose & meaning of EVERYTHING. Today is not a milestone to be celebrated, but it feels significant, at least to me, and I believe that it deserves to be noted.
2018-10-17
74) Apples & oranges
You shouldn’t compare apples & oranges. It’s not fair to the
apples, nor is it fair to the oranges.
People are unique
individuals, and everyone has their own personality, as well as likes
& dislikes. Despite knowing this as an absolute fact, I still
marvel at my two boys, and just how different they are from
each-other. When we’re at the park, J, who is 4, will want to climb
a ladder on the playstructure, but he always asks for my help. E, who
is only 2, requires hawk eyes on him all the time. He’ll see his
brother climb the ladder, and then he wants to do it. But no, E
doesn’t want your help. No, E wants to climb the big ladder all by
himself, regardless of whether he has the balance & co-ordination
to do it on his own. I know they are each their own person with their
own genetics, and their own personality, yet it still surprises me to
see their differences, and the way they’ll approach something.
I cried today for
the first time in a while.
Mom, if you’re
reading this, there’s nothing wrong with E, or J, or my wife, so
don’t worry. I wouldn’t say that any external influences are
currently weighing on me. It’s more internal struggles, and
swirling thoughts. Comparing apples & oranges if you will.
I feel like I’m a
mess these days. I feel half-functional, and that I’m just barely
scraping by. I’m pessimistic by nature, but I feel as though I’ve
been taking that to new highs (lows?) lately. One of the lines in my
Twitter bio reads “searching for the dark cloud to every silver
lining”. I wrote that half-jokingly, and I wrote it long before E
was diagnosed with leukemia.
Then I start to
think about our situation, and while it’s definitely not ideal, it
could actually be much worse. E has B-type ALL, the most common, and
treatable form of childhood leukemia. He has an excellent prognosis.
From this, my thoughts turn to darker places. There are other parents
whose children may not have as good of a prognosis as our little E.
There are other parents who probably wish that all their child had
was B-type ALL.
Thus begins the
self-loathing. How can I feel so down, and dysfunctional when I
should be feeling lucky to be in this situation? It could be so much
worse, and here I am feeling like a dumpster fire of a human being.
Apples &
oranges. Everything I’m feeling is based on grief. All of the
things I feel like I’ve lost because of my son’s cancer
diagnosis. I’ve seen a lot of articles about grief lately. I
haven’t searched them out, they’ve just come to me from various
sources or feeds. Grieving doesn’t necessarily require death. No,
you can grieve over plenty of things in life: a failed relationship,
a missed opportunity, a stalled career, a sick child, and more.
I’m grieving the
life that I feel we could have had, if cancer hadn’t reared its
ugly head. I’m grieving, and my feelings are valid. Just as valid
as the grief of a parent of a child who doesn’t have that excellent
prognosis. Different yes, but still valid. Apples & oranges. I’m
not being fair to myself to compare the two.
That’s may be true, but
why do I still feel like a bag of shit?
2018-10-07
73) It's been a hard day's night (and day)
Wednesday October 3rd, 2018. We had not even woken up to begin the process of traveling to SickKids, and it was already a difficult day. The previous evening, I had fallen asleep with J after having read him his bedtime stories. My wife woke me up, so I got up for some water & to brush my teeth. Then I had problems falling back asleep, and was awake until almost midnight. An alarm went off at 2:15, and I crawled out of bed to get milk for E, because his procedure needed him to start fasting at 3am. Drinking his milk, E woke up and wouldn't go back to sleep. Naturally, he ended up in our bed. Shortly thereafter, J woke up and was calling out for me. I went to his room to lie down with him, but he said he wanted his mom. Instead of waking my wife, I carried him over to our room.
So there we were, 2 adults, and 2 kids sleeping in a queen size bed. At 5am, I was awoken by the sounds of a vomiting 4 year old. J had been picked up early from school the previous day, because he was feeling unwell. It looked like whatever bug he picked up was legit. He wouldn't be going to school that day. Luckily, my mother-in-law had spent the night to help us get J off to kindergarten so we could leave early. She would have to stay to take care of him.
We were out the door around 6:30am, and arrived at SickKids around 7:30am. It was a fairly uneventful trip. We went through the usual motions of registering, medical questions, height & weight, accessing E's port, bloodwork, and visiting the oncology team. Then, we just had to sit and wait to be called into Cujo's Room for the lumbar puncture. We were told that E would be going second that day.
The procedure for the child called first seemed to take longer than normal, and I could feel my anxiety starting to crank up while we tried to keep E still, and entertained until it was his turn. Then E's procedure seemed to be taking longer than normal. We watched while a hospital staff member walked down the hall, entered Cujo's Room, stayed a few minutes, then left. Before he walked away, he looked at us and said "don't worry, your son is fine". We looked at each-other, and wondered what that was about.
After what felt like hours, the door opened, and E was wheeled out of Cujo's Room on his recovery bed. The recovery beds are full-sized adult beds, and I always marvel at how tiny he looks when he comes out of his procedure. The nurses told us that the oncologist fellow doing the procedure had problems accessing the spinal fluid with the needle, and that they had to stop and call a more senior staff member after 3 failed punctures. There was a total of 5 punctures in his back, and that he might be a little extra sore because of it. While a bit upset, I wasn't angry about this. Junior team members deserve the opportunity to learn and practice procedure, otherwise they will never advance. It wasn't done on purpose, or with malice - I don't think any oncologist in history has woken up in the morning thinking "let's seen how many unnecessary lumbar puncture pokes I can dole out today...". Younger/junior staff are the future, and they need opportunities to both succeed, and fail so that they can learn, and grow as professionals.
In the recovery room, the nurses measured E's vitals, and the anesthesiologist seemed happy with what they were saying, so that's my cue to relax. My wife sat with E, and I ran downstairs to grab a bite of lunch. I brought my food back upstairs while E slept so that my wife could run down and grab some food for herself. I briefly set my food down to snap a pic of unconscious E. I had literally just sent the pic to our family group chat to let them know the procedure had gone well, when E woke up, and woke up screaming. Having added the text "sleeping peacefully after his lumbar puncture", I think I put the whammy on myself.
He was NOT happy when he woke up. He usually wakes up a bit early, but NEVER after 15 minutes. Usually, he might wake up after 45 or 50 minutes, but never this early. E has to lie flat for an hour afterward, so that 1) he doesn't get a massive headache, and 2) the methotrexate is dispersed evenly throughout his spinal fluid, and the fluid surrounding his brain. He was still heavily under the effects of the general anesthesia, and he was not happy about it. Screaming, and crying; he was inconsolable, and nothing we tried calmed him down. He didn't want milk, he didn't want to eat. He didn't want to watch any of his favourites on YouTube. Everything we tried to give to him was swatted away by his angry little hands. Individually, we took turns lying down with him on the recovery bed, but to no avail. Finally, the solution was to sit in a chair, and hold him down while trying to soothe him. Unwillingly, E lay flat our laps until the hour was complete, and he was able to sit up again. It was exhausting both mentally, and physically. Also, as the hour ticked slowly to a close, the effects of the anesthesia started to wear off, and we could see our little E again. He became less angry, he wanted to watch YouTube, he accepted his milk, and he wanted his cookie.
He was given the same anesthetic that he received during the previous lumbar puncture. The only thing different this time was that he was also given gas. The anesthesiologist was puzzled, because the gas usually makes them sleep longer. He suggested we state "no gas" at our next procedure.
Returning home, we found that J was feeling a bit better, and that my mother-in-law had very graciously made soup. We had a healthy ready-to-eat dinner solution, and I wouldn't have to cook that night.
It had been a hard night, and day with sleeping problems, being up in the night to give milk, a vomiting 4 year old, and the upset over E waking early from his anesthesia. But, the day wasn't done with me yet. My mother called the house around 6pm with some news. My great aunt, who's had a health decline in the past couple of weeks was in the hospital. The doctors had determined that she had cancer, and that it had spread literally everywhere in her body. I'm having a lot of difficulties processing this right now, especially given that E is in treatment for leukemia. Two days later, on Friday October 5th, I received another call that she had passed away. Love you, miss you, and rest in peace, Auntie J.
So there we were, 2 adults, and 2 kids sleeping in a queen size bed. At 5am, I was awoken by the sounds of a vomiting 4 year old. J had been picked up early from school the previous day, because he was feeling unwell. It looked like whatever bug he picked up was legit. He wouldn't be going to school that day. Luckily, my mother-in-law had spent the night to help us get J off to kindergarten so we could leave early. She would have to stay to take care of him.
We were out the door around 6:30am, and arrived at SickKids around 7:30am. It was a fairly uneventful trip. We went through the usual motions of registering, medical questions, height & weight, accessing E's port, bloodwork, and visiting the oncology team. Then, we just had to sit and wait to be called into Cujo's Room for the lumbar puncture. We were told that E would be going second that day.
 | |
| Playing, and looking out the 8th floor window at SickKids while waiting to be called for his lumbar puncture |
The procedure for the child called first seemed to take longer than normal, and I could feel my anxiety starting to crank up while we tried to keep E still, and entertained until it was his turn. Then E's procedure seemed to be taking longer than normal. We watched while a hospital staff member walked down the hall, entered Cujo's Room, stayed a few minutes, then left. Before he walked away, he looked at us and said "don't worry, your son is fine". We looked at each-other, and wondered what that was about.
After what felt like hours, the door opened, and E was wheeled out of Cujo's Room on his recovery bed. The recovery beds are full-sized adult beds, and I always marvel at how tiny he looks when he comes out of his procedure. The nurses told us that the oncologist fellow doing the procedure had problems accessing the spinal fluid with the needle, and that they had to stop and call a more senior staff member after 3 failed punctures. There was a total of 5 punctures in his back, and that he might be a little extra sore because of it. While a bit upset, I wasn't angry about this. Junior team members deserve the opportunity to learn and practice procedure, otherwise they will never advance. It wasn't done on purpose, or with malice - I don't think any oncologist in history has woken up in the morning thinking "let's seen how many unnecessary lumbar puncture pokes I can dole out today...". Younger/junior staff are the future, and they need opportunities to both succeed, and fail so that they can learn, and grow as professionals.
In the recovery room, the nurses measured E's vitals, and the anesthesiologist seemed happy with what they were saying, so that's my cue to relax. My wife sat with E, and I ran downstairs to grab a bite of lunch. I brought my food back upstairs while E slept so that my wife could run down and grab some food for herself. I briefly set my food down to snap a pic of unconscious E. I had literally just sent the pic to our family group chat to let them know the procedure had gone well, when E woke up, and woke up screaming. Having added the text "sleeping peacefully after his lumbar puncture", I think I put the whammy on myself.
He was NOT happy when he woke up. He usually wakes up a bit early, but NEVER after 15 minutes. Usually, he might wake up after 45 or 50 minutes, but never this early. E has to lie flat for an hour afterward, so that 1) he doesn't get a massive headache, and 2) the methotrexate is dispersed evenly throughout his spinal fluid, and the fluid surrounding his brain. He was still heavily under the effects of the general anesthesia, and he was not happy about it. Screaming, and crying; he was inconsolable, and nothing we tried calmed him down. He didn't want milk, he didn't want to eat. He didn't want to watch any of his favourites on YouTube. Everything we tried to give to him was swatted away by his angry little hands. Individually, we took turns lying down with him on the recovery bed, but to no avail. Finally, the solution was to sit in a chair, and hold him down while trying to soothe him. Unwillingly, E lay flat our laps until the hour was complete, and he was able to sit up again. It was exhausting both mentally, and physically. Also, as the hour ticked slowly to a close, the effects of the anesthesia started to wear off, and we could see our little E again. He became less angry, he wanted to watch YouTube, he accepted his milk, and he wanted his cookie.
He was given the same anesthetic that he received during the previous lumbar puncture. The only thing different this time was that he was also given gas. The anesthesiologist was puzzled, because the gas usually makes them sleep longer. He suggested we state "no gas" at our next procedure.
Returning home, we found that J was feeling a bit better, and that my mother-in-law had very graciously made soup. We had a healthy ready-to-eat dinner solution, and I wouldn't have to cook that night.
It had been a hard night, and day with sleeping problems, being up in the night to give milk, a vomiting 4 year old, and the upset over E waking early from his anesthesia. But, the day wasn't done with me yet. My mother called the house around 6pm with some news. My great aunt, who's had a health decline in the past couple of weeks was in the hospital. The doctors had determined that she had cancer, and that it had spread literally everywhere in her body. I'm having a lot of difficulties processing this right now, especially given that E is in treatment for leukemia. Two days later, on Friday October 5th, I received another call that she had passed away. Love you, miss you, and rest in peace, Auntie J.
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