98) Childhood

It’s been a while. There’s been quite a lot happening, but also not much happening, if that makes any sense.

I’m going to try an easy slide back into posting with a few different thoughts.

Sometimes I wonder how having a kid with a life threatening illness will affect the childhood of said child and their sibling. I don’t know if it will do anything long-term, only time will tell, but do I have a couple of observations for the present:

J is a master at spotting the blue H signs that signify a hospital. Almost anywhere we go, he’ll notice one and say “look, hospital!”. Somehow I don’t think he’d be so attuned to the signs if so much of our lives in the past year-and-a-half hadn’t been spent going to hospitals for bloodwork, and chemotherapy with his brother.

We have a toy medical kit at home. It was bought for J when he was younger, but now E will play with it as well. There’s a toy syringe in the kit, and you’d expect most kids to play with it by pretending to give themselves a shot in the arm. With E? No way. Everything he knows about syringes is that they’re filled with medicine, or medicine dissolved in liquids. Then the syringes are used to administer this medication orally. Naturally, when E is playing with the toy syringe from the toy medical kit, he’ll come up to us and stick it in our mouths, because that’s where syringes go, according to his experiences.

97) Cycle 5

Wednesday March 13^th, 2019. We travelled to SickKids for E’s scheduled 3-month lumbar puncture. This marked the end of Maintenance Cycle 4, and the beginning of Cycle 5. My mom had come down and stayed over. That meant we could leave early, and she could get help by getting J to March Break daycamp. The traffic into the downtown core was a bit lighter with many people off, or away for break, so the door-to-door trip only took us an hour. Much better than the usual 1.5 – 2 hour ones.

In hindsight, this story actually begins 4 weeks ago. We were at our satellite clinic for E’s monthly vincristine push & bloodwork. There was a problem with his port: our RN could flush saline into the port, but there was absolutely no blood return. He was able to get his vincristine push that day, but they had to do a finger poke to collect blood because they couldn’t get any out of the port.

Fast forward to 2 weeks ago. We were again at our satellite clinic, and our nurse practitioner & RN had asked us to bring E in with an EMLA patch. Instead of the usual finger poke when we go in just for bloodwork, they were going to try to access his port again to see if they could get blood return. It worked! Everything was good, or seemed to be....

Fast forward again to this week. At SickKids, E had his port accessed, but they couldn’t get any blood return, despite numerous saline flushes. We were told that this isn’t a problem, and this sometimes happens in maintenance. There can be a sheath blood clot around the end part of the tube that goes into E’s jugular vein. This sheath will open to allow saline, or chemo to be pushed, but it will draw up, and cover the end of the tube when they attempt to draw blood. It’s fairly common, especially in Maintenance when the port is not accessed as often. There’s a fairly easy solution though: they inject a drug called TPA, and let it sit for a while. TPA will dissolve the clot, allowing the port to function properly again. The only problem is that we were told that they would have to flush E’s port with TPA, and we’d have to wait 2 hours before checking to see if the clot had dissolved. If you check earlier, and it’s not dissolved, you have to start from the beginning again. So, we had an extra 2 hours added on to our day, waiting for E’s clot to dissolve.

The previous night, we had fed E solids a bit later than normal, because he needs to go under general anaesthesia for the lumbar puncture procedure. Patients can have solids up until midnight, milk, or juice up until 4am, and clear liquids until 8am. We fed E around 7:30pm, and I set an alarm to wake up to give him a bottle of milk at 3:30am. He didn’t just sleep-drink the bottle, he woke up. That had me awake, and also woke up my wife. Around 4:30am, I still wasn’t back to sleep, and J woke up, and was calling for me. I went to snuggle with him in his bed, but never went back to sleep. It was a fairly busy waiting room in 8D, and there were a few more kids than normal. Combined with a slightly busier than normal day, and the extra 2 hours we had to wait, E didn’t get his turn in Cujo’s Room for his procedure until 12:15pm. By this time he was so hungry, and I felt so badly for him. We brought a cooler with milk, and food for him to eat when he woke up from his procedure, and he was well aware that we had it, and he knew there was food inside. The poor little guy kept asking “eat, eat, eat”, or dragging the cooler out from underneath the stroller, and saying “open, open”. It broke my heart to see asking for food. We can’t explain why he can’t eat. He’s hungry, he wants food, he’s asking for food, we’re saying no, and he’s rightfully getting upset. Poor guy, he doesn’t understand.

His procedure seemed to take a bit longer than normal, and we found out that the anaesthetic didn’t work on him so well. They gave him his dose, whatever it was, and he was out, but not completely out. He was still moving, and twitching, so they had to give him more. They told us they gave him 120mL, which is a fair bit for someone with a mass of ~15kg. It still wasn’t working, so they had to add in an adjunct anaesthetic to completely put him under. They tell us that sometimes patients will build up a bit of a tolerance to anaesthesia if they are put under a lot. This is probably his 15^th or 16^th time under general anaesthetics in less than 2 years, so that’s fairly frequent. I wonder though, how much of his mood might have had an effect on it? He was hungry and agitated, so perhaps that had an effect, and caused his body to have a greater tolerance?

The biggest fireworks of the day were save for the recovery room. Right around 12:30pm, the door to Cujo’s Room opened, and they wheeled him out on a stretcher. We got a smile and a thumbs-up from the staff inside, which is their usual signal for things went well, and everything is fine. We followed the team wheeling him into slot B in the recovery room, where they analyze and monitor his vitals. We started getting the sense that something was wrong. One of the team members said something about “he had colour in his face before the procedure”, then they promptly gave him a mask with oxygen. At the same time, another nurse was hooking up a pulse/blood oxygen sensor on his toe. We saw his pulse on the monitor, and then we saw the pulse go flat. My wife and I looked at each-other for what seemed like minutes. I don’t remember whether I thought it in my head, or whether I asked her aloud, but “what is going on?” was first and forefront in my thoughts. My wife managed to croak “is everything okay, is he alright?”, and the nurses told us that all was fine. I started to feel a panic attack coming on, and I looked around the room for a chair that I would be able to use to sit down. I could feel the blood draining from my head, and my vision started to fade a little. I spoke to myself in my head. I reassured myself that the nurses weren’t at all panicked. No one had called a code blue, and no on was yelling for a doctor, or to start some emergency protocol. I slightly cooled my panic to the point where I probably wasn’t going to pass out. At this time, the nurses had brought in another monitor, and were busy hooking up the sensor, and the cable to it. Still nothing on the second monitor, which bumped my stress levels a bit. They were much closer to E than we were, so they could see he was breathing, but we were further away, and couldn’t really tell what was going on. The original monitor was rebooted, the cable & sensor were tossed, and new ones were brought in and hooked up. At last, there was a pulse on the monitor, and things were reading as they should. Nothing was actually wrong with E, our anxiety and panic had been brought on by a technical problem with the equipment, and/or a sensor and cable failure.

E woke up only half an hour after his procedure was done. They’re supposed to lie flat for an hour so that the methotrexate injected into the spinal fluid had a chance to disperse evenly, and also so the patient doesn’t get a headache. Normally, E wakes early, is still coming out of the anaesthetic, is in a bad mood, and needs to be held down until the hour is up. The other day, for the first time ever, he woke up happy, and was content to lie on his back, eat cookies, drink milk, and watch YouTube.

After the hour was up, E had a quick vincristine push, and we were ready to go. I had to buy a new parking pass, and we had to pick up a couple of prescriptions before we left the hospital, so we weren’t on the road until about 2:20pm. Home around 3:30pm, and my mom was nice enough to have a dinner all planned out for us, thanks!

All in all, an exhausting, and stressful day, especially when you’ve been awake since 3:30am. Viva la Cycle 5, and the start of steroid week....

96) The cancer alphabet

E is infatuated with the alphabet. When he's awake, he's watching ABC songs on YouTube, he's singing the alphabet, or he's saying letters. The other day, he was sitting in his highchair, and saying letters followed by the name of something that starts with that letter. A apple, B ball, and so on....

It inspired me to create the cancer alphabet. It's part humour, and part "why the hell did you do this to my family?". The cancer alphabet is similar to the Roman alphabet, but it only has six letters. I'm going to get this made into a shirt.

The cancer alphabet

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.