95) ?, Trinket, pink shirts, and snow

Currently, we’re looking squarely in the rearview mirror at steroid week. Unfortunately, it doesn’t feel like it’s over. It’s 9 days after E’s last steroid dose, and he’s still unusually difficult, overly scream-y, and experiencing sleep issues. He doesn’t want to go to sleep at night, and he wakes up so early. Just the other night, he didn’t fall asleep until around 11pm, and he was wide awake the next morning at 6am. We know his regular personality, and he’s acting so out of character. It’s frustrating, because we know who we’re seeing right now is not the real E. Is he still being affected by the steroids, or is it just a terrible twos thing? Am I overthinking again? Probably.

Today was a busy day. There was a snow event that dropped 10 – 15cm of snow on the ground for the GTA, and we had several appointments, so there was lots of running around. It really seems like we've had snow, freezing rain, rain, or a combination of all three every Wednesday since January. I'm done. Bring on spring.

Near whiteout in Scarborough

It was #PinkShirtDay today in support of anti-bullying initiatives, and we sent J off to school with a pink t-shirt over his long sleeve shirt. I also wore one too, and he was quite happy that we were “twins”.

Daddy and J in our twin shirts for #PinkShirtDay

Today was bloodwork day at the pediatric oncology clinic in Scarborough. Normally, E gets a finger poke, but today he was accessed through is port. At our previous appointment, E was accessed to give him vincristine, and also to take blood for a CBC. E was being miserly last time, and there was no blood return from his port, so our nurse practitioner & RN wanted to access him at the next appointment, which was today’s one. Things like this will occasionally happen in maintenance, since they are only accessed through their port once per month. This can cause a bit of clotting on the inside, and will sometimes prevent blood return. At the end of a port access session, the port is always flushed with saline, and locked with heparin, which is an anticoagulant. I guess the heparin from the last appointment did the job, because things worked this time. As always, the deal with the kids is as follows: they get chemo and/or have blood taken, and then they get access to the treasure chest, where they get to choose a toy. This was E’s toy selection today:

Nella The Princess Knight's unicorn, Trinket

In case you were wondering, yes, that is Nella The Princess Knight’s unicorn Trinket. And, no, I don’t care if my sons play with stereotypical “girl toys”. I laughed at E’s choice because just this morning, he ripped a page out of a colouring book that was a picture of Trinket. E got my attention, and said “horse”. I guess he was thinking about a horse, saw one, and wanted it. I love it!

Near the end of the day, we ended up at my in-laws’ house, and had dinner. My father-in-law baked a couple of loaves of cornbread that tasted amazing, and I ate too much of it. Okay, it was a mix of wheat & corn, but who’s counting.

One last thing before I wrap up this post, and it kind of blew my mind. E and I were playing with blocks. The blocks had various numbers, letters, and pictures on them. I noticed a block that had some symbols on it, including a “?”. I showed him the “?” and asked him what letter it was. He knows his letters, he knows his numbers up to 20, but we haven’t taught him symbols, and I was SURE he would be stumped. I was absolutely astounded when he replied “eckin mar” (question mark). I’m still scratching my head as to where he learned it.

94) Steroid week debrief

Steroid week has come and gone, but the effects still seem to be lingering. It was fairly typical with bouts of rage, extra crying, insatiable hunger, and a few sleepless nights. I sometimes find that the worst part of steroid week comes on the Monday when we finish, and lasts for a day or two afterward. E’s cravings this time around were fairly standard: milk, cookies, and chocolate.

Monday was Family Day here in Ontario, and we had my wife’s family over to celebrate my mother-in-law’s birthday. Five boy cousins, aged 2 to 7 were running around the house. They seemed extra loud & fighty than the usual dull roar when all 5 are together, and it had my anxiety tweaking the whole visit.

Tuesday was back to work, and our morning routine was interrupted by E vomiting all over himself while sitting in his high chair. Of course this made J laugh, and though we tried to explain that you don’t laugh when someone vomits or hurts themselves, he just wasn’t getting it. Tuesday was much too far away for him to still be feeling nauseous from his methotrexate. Monday night had normally been 1/2 a pill of 6MP, but just last week, SickKids instructed us to increase the dose to a full pill. I’m not sure if that had anything to do with the barfing. We know some other families in treatment whose kids vomit in the morning after the previous night’s 6MP dose, but it is extremely unusual for E. He’d also been drinking a bottle of milk, and had a few funny coughs before he brought up the contents of his stomach. Maybe it was one thing, maybe another, or maybe a combination. More likely, I’m overanalyzing it.

Tuesday night, February 19^th, he did not want to go to sleep at all. I took him to our family room, put on the TV, and tried to get him to lay with me on the couch, but to no avail. He was up playing with his toys, and watching television until well after 11pm. Finally, he made a number in his diaper, so I changed him, and only then he was ready to settle down. I was completely wiped out by that point in time, so it didn’t surprise me when I woke up the next morning and found the both of us still laying on the couch.

E had a lot of energy this week. Even after Wednesday’s dose of methotrexate. Usually that slows him down by a step or two for a couple of days, but it almost hasn’t seemed to phase him this week.

My wife went out to work today, so it meant that it was E, and me sitting around the house staring at each-other all day. If only. He was full of energy today, and you couldn’t keep him in a single room for longer than a few minutes at a time. He wanted to get into everything today: markers, toys, paper towel, pulling magnets & papers off the fridge, scattering flyers, etc. He pooped 4 times today before noon. I was expecting him to break his own personal record of 7, but he only did one more for a total of 5. Poor little guy though, his stool is all acidic from the methotrexate, and even though he was changed within minutes of having gone, his little bum is chapped, red, and sore looking. He was quite unhappy with me applying bum cream after poops 3, 4, 5, and after his bath. Normally, he’ll take a nap on a Friday because it seems to be the day that Wednesday’s methotrexate hits him the hardest. Not today though, he must still be riding a high from the steroids because he was not having it when we tried to nap. It worked out for the best though, because tonight was probably the first night in a week that he went to sleep at bedtime. I’m happy for this week to be over, because I’m exhausted.

93) A lot can change in a year

L: E in February 2018, R: E in February 2019

 

This morning, Google Photos notified me of a new "Rediscover this day" memory from last year. In February 2018, we were right in the middle of Delayed Intensification II, E was neutropenic, and his hair had fallen out for the second time. He looked so frail, so sick.

Contrast this with now, February 2019, where we are in the middle of Cycle IV of Long Term Maintenance. We're chugging along, he looks healthier, and he has hair. In fact, we've had to cut it about 3 or 4 times since it started growing back a little more than a year ago.

Delayed Intensification I and II are awful. They do a number on our children. They look unwell, they feel unwell, and there are a number of chemo drugs with some frightening potential side effects. From a parent/caregiver point of view: you're trapped in a form of isolation, and there are plenty of dark days and dark thoughts.

In the vein of my recent post about positivity vs. negativity, please let this picture be a beacon of hope for anyone who may be barely scraping by during DI. You'll come out the other side of this. Things will get better. You probably don't hear this enough, and there are definitely days when you don't feel it, but you are a rock star. You are doing a great job as a parent/caregiver. There's no instruction manual for how to go through something like this, so you're doing what you can to push through, to do for your child what needs to be done, and you need to be saluted for your efforts.

92) International Childhood cancer Day, negative/positive, and steroids

Today is February 15^th, 2019. It’s International Childhood cancer Day (http://www.internationalchildhoodcancerday.org/). It’s celebrated around the world every February 15^th, with the goal of “reducing childhood cancer mortality and the elimination of cancer-related pain and suffering.” In a previous post, I wrote about how one of my cousins had her son diagnosed with Wilms tumor at age 21 months. His picture popped up in my Twitter feed today as featured by Childhood cancer Canada.

My cousin's son, in treatment for Wilms tumor popped up in my Twitter feed today

I’ve been thinking a bit lately about the content of this space. I feel as though my musings have been more negative than positive. It’s true that the experience of having a child with cancer can be extremely difficult, but it’s not all doom and gloom around my house. As with everything, I think the human psyche tends to focus more on the negatives than the positives, and I find I need to write more about the things that get me down. If I’m in a better headspace, I’m generally not writing about it. Instead, I tend to formulate, and post my cracked-world-view jokes to Facebook or Twitter. There’s good days, and bad days, it just so happens that my bad days fuelled by my son’s life threatening illness. E is a happy little guy. He has a smile that lights up the whole room, and an infectious little laugh. I will go far out of my way to act silly, or make myself look like an idiot just to hear him giggle. There’s a lot of stress, anxiety, and worry around our house, but there’s a lot of laughter too. In fact, yesterday was a great day for me, mental health wise. I was awake earlier than normal, the kids got ready in extra slow motion, I forgot my work badge & had to double back, and I was stuck in a traffic jam that resulted in a 1.5 hour drive into the office. Really, it had all of the ingredients for me to be angry, upset, or feeling off, but I felt great. There’s always that little nagging “my son has cancer” thought in the back of your mind, but I was in a good mood, and the day almost felt like a return to the pre-diagnosis days. The days aren’t always like this, so you have to try to enjoy them when the good moods hit.

On Wednesday February 13^th, we wrapped another mini-cycle. We had an appointment at the POGO clinic in Scarborough. It was bloodwork, and a vincristine push this time. He needed to be accessed through his port, and he ended up ripping not one, but two EMLA patches off before we left the house. Arriving at the hospital, they had to use a different numbing cream under an adhesive patch. E was accessed with no problems. The vincristine push happened with no problems. But, he was stingy and didn’t want to give up any blood out of his port, and he needed a couple of finger pokes to collect what was needed for a CBC. After lunch, we received a call from our RN that E’s counts were up again (surprise, surprise). Later, SickKids called to tell us that they were going to bump his 6MP from 1 pill five days a week & 1/2 a pill 2 days a week to 1 pill six days a week & 1/2 a pill 1 day a week. I think his bloodwork has been in the “normal” range only once in the past 6 or 7 months.

E, in need of a haircut, and admiring the fish on the pediatric floor where the POGO clinic is located

The start of a new mini-cycle also means the start of steroid week. He’s only 1.5 days into the 5 day ordeal, but he’s already showing symptoms of being cranky & irritable. It’s difficult so see him acting this way, especially when you know that it’s so NOT his personality. It’s frustrating, but you just need to remember that it’s not him, it’s the dexamethasone that’s making him out of sorts. He’s been extra hungry so far, but right now he seems to be craving milk. At 9:15am this morning, I had him sitting in his highchair because he wanted ice cream. I’m hoping steroid week goes easy on us this month.

91) January rollup

I’m hoping that this is the last of my “rollup” posts, and that I can get caught up, and start writing about more current events, rather than trying to recall what was happening in the previous month.

At his lumbar puncture in December, E had the most “normal” counts we’ve seen in 6 months of bloodwork. January tests brought levels that were higher than what his oncologists like to see.

Steroid week began the evening of Wednesday January 16^th, and wrapped up the morning of Monday January 21^st. It’s called steroid week, but it’s actually five days, even though sometimes it feels like a month. It was a slightly worse than average week for a course of steroids. E started out not too badly, but became progressively more cranky and irritable.

Probably his worst day was January 20^th. We travelled out to visit my brother, his wife, and my nephew P for his 5^th birthday. J had a great time playing, but E was all over the place. In an unfamiliar space, he wanted to explore everywhere, and our efforts to contain him were met with screams, tears, and tantrums.

Car crash. She wasn’t injured, buy my wife ended up being in a freak wrong-place-at-the-wrong-time car accident on Friday January 25^th. She was on her way to pick up J from aftercare, and she was first in line at a red light at the end of our street. She was headed east. There was a car facing north, making a left hand turn to go west, and there was another car travelling south. The car travelling south went through on an amber light, and I guess the left hand turn maker misjudged. The person making the left hit the front end of the person headed south. The person headed south spun around a few times, and smashed into my wife’s car, but because of the way they were spinning, they hit the passenger side. Her car was hit so hard, she was pushed back into the person's car behind her. Fire, police, ambulance were all called. As far as I know there were no major injuries to any of the involved parties, which is good. Even if someone is at fault for an accident, I don’t wish them any ill will, or harm. Since my wife was on her way to get J, she was excused from the scene to get our son. The tow truck driver graciously drove my wife to pick up my son, and gave them a lift home, all with the crashed car up on the lift. My wife then had to borrow my car to return to the scene to give her statement. Many thanks to DRPS, Ajax Fire, and Region of Durham Paramedic Services for their prompt, professional, and caring response to the situation. The tow truck driver said he thought the damage was mostly cosmetic, but our insurance thought otherwise, and assessed $12,000 in damage, and wrote the car off. Many thanks to my mother-in-law, and father-in-law for watching our little monsters so we could shop for a new car on the weekend on the weekend of February 2^nd & 3^rd. I’m happy that it is now behind us in the past, and I’m more happy that no one was severely injured or killed.

My wife & son J being dropped off by the tow truck.

90) World cancer Day

February 4^th. Today is World cancer Day. In fact, it falls on February 4^th every year. From https://www.worldcancerday.org:

Each year on 4 February, World Cancer Day empowers all of us across the world to show support, raise our collective voice, take personal action and press our governments to do more. World Cancer Day is the only day on the global health calendar where we can all unite and rally under the one banner of cancer in a positive and inspiring way.

This year’s theme is #IAmAndIWill. It’s a theme of empowerment to reduce the impact of cancer for yourself, loved ones, and the world.

They have a create feature where you can make a customized poster to share on social media. https://www.worldcancerday.org/custom-poster

I’ve seen World cancer Day mentioned quite a bit today, on both Facebook, and Twitter. That’s good, it seems like the message is getting out.

I did however, see one post which felt like a punch to the sternum:

SickKids Hospital tweeted the above message earlier this afternoon. I quickly noticed the dates mentioned in the tweet, and had a couple of minutes where I broke down, and almost lost it. E’s diagnosis date was July 22^nd, 2017. I felt as though a heavy weight had been dropped on top of me. It took me until the Interim Maintenance II phase to grasp the reality, severity, and the seriousness of what had happened to our family. But today. Today was the first time that I had ever really thought of my son as a statistic. I’m not angry, or upset, nor do I feel dehumanized or reduced to just a number in any way. I just feel an overarching sadness that our little E is but one tick of 130 leukemia diagnoses at SickKids from April 2017 to March 2018. And behind all of those other numbers are families whose lives have been shattered and upended by just about the worst thing that can happen to your child.

89) Girls and boys

I recently had a conversation with J which made me a little bit sad. He was talking about something, and added a comment about “but I don’t play with that, because that’s a girl’s toy”. I feigned innocence and asked him if there were really different toys for boys and girls. I rattled off a list of different toys, and he correctly labelled them as a “boy’s toy”, or a “girl’s toy” if we’re following traditional gender stereotypes.

Apparently, there are even different TV programs for boys and girls too! I asked him about a number of shows, and he again told me whether they were for boys or for girls. Some of the shows he used to watch when he was a bit younger are now labelled as “girls’ shows”, and he said he doesn’t want to watch them anymore.

Raising him so far, we’ve never told him to not play with a toy, or to not watch a show because it’s only for girls. I’m totally fine if he wants to play with dolls, or if he wants to watch a stereotypical girls’ show like Shimmer & Shine. Kids are kids, and I don’t feel it’s my job to tell him that he can’t do something just because it doesn’t conform to traditional gender roles.

Admittedly, having two boys, we do tend to have more stereotypical boys’ toys such as cars, but they are toys that J, and E have gravitated toward naturally. From the time J was about 16 months old up until a bit after 24 months, he used to scream with delight, and do a little dance whenever Trucktown was on. E did almost the exact same thing, but with him, it was Paw Patrol, and Blaze & The Monster Machines. They showed an interest in cars, so we bought them die-cast cars. If they had of showed the same interest in My Little Pony, I would have bought them pony figures. If it was Barbie, then it would have been dolls.

I guess my point is that he’s learning, and realizing that there are gender differences. I’m a bit sad because someone, probably peers at school, are influencing him to think that it’s socially unacceptable for him to play with certain toys, or watch certain shows because “they’re for girls”. I don’t want him to be ostracized for being different, and I’m trying to teach him to value & celebrate everyone’s differences, because everyone is not the same and that is fine. On the other hand, I don’t necessarily want him to conform just for the sake of conformity. It’s perfectly find to colour within the lines, but there’s also nothing wrong with colouring outside of them. It’s a delicate balancing act.