113) The Hospital, or There and Back, and There and Back Again

Wednesday was exhausting. It was E’s 3-month SickKids visit for a lumbar puncture. We also had him booked into the in-hospital dentist for a checkup, because chemo can do a number on your teeth.

My mom came down the night before, to help us get J to school in the morning. As usual, we weren’t up quite as early as planned, but traffic proved to be much worse than usual. We left the house at about 7:15am, and didn’t arrive at SickKids until about 9:15am, so 2 hours of traffic. En route, we received a text message from my mom. She couldn’t find J’s schoolbag. It turns out that me, in my infinite wisdom, had grabbed J’s schoolbag from the front door & placed it in the trunk. The trunk of the car that we were driving which was on the way to SickKids. So my mom had to scramble & get J to school, come back to the house, make him a lunch, and then go back to the school to drop it off in the office so that he’d have food for snack & lunch. Sorry ma!

This was the start of maintenance cycle 8, and doing a bit of quick math, E only has 3 more lumbar punctures before reaching end of treatment! Our morning routine at SickKids was pretty standard: port access, take blood sample, check height & weight, then off to meet with our oncologist. Our oncologist currently has a student working with her, and we saw the student first before the doctor came in. I’m bad with names, and/or the details were lost in a long busy day, but I believe her name was Julie, and she was great! I’m planning on contacting our oncologist to give her some great positive feedback on her student, because she had an amazing bedside manner, and you could tell that she was someone who is genuine & cares. I’m sure that she will have a successful career, and have an amazing bond with her patients & their families.

E’s counts were good, and we raised a few issues, such as the cold he’s had for 2 months, and how he’ll (almost daily) tell us that his toe hurts. Upon checking his ears, they noticed that his left ear was red, and they noticed some pus. So, in addition to the regular chemo prescriptions, we got another one for amoxicillin for his ear infection. Despite the runny nose & cough, it was determined it was okay to proceed with the lumbar puncture, but he ended up being last. I’m never certain how they sort things, we could have been last because we were so late, or we could have been last because of his cold, and they were worried about him contaminating the room for the other kids.

They took him in to the procedure room around 11:45am, and he was done & wheeled out to the recovery room a couple of minutes before noon. He was in a little bit of rough shape post-procedure, so they had to give him oxygen. I was worried, seeing him with the child-sized mask on his face, but none of the nurses or doctors seemed overly worried. His cold had made him cough, which was affecting his levels, so he needed a bit of O2 help. We were speaking with the anesthesiologist, and he said the result of needing oxygen wasn’t unexpected, so the team wasn’t surprised, and E wasn’t in any real danger.

E is notorious for waking early from his anaesthetics. This time proved no different, and he was up after only 5 minutes in the recovery room. When he was younger, we’d have to lie with him, or forcibly hold him down, because the kids need to lie flat for an hour after the procedure to ensure that the methotrexate distributes evenly in their spinal fluid. This was probably his best recovery ever. Despite waking reeeeaaaally early, he was content to lie flat, drink some milk, eat some Oreos, and watch YouTube.  

Multitasking: recovering, watching YouTube, and eating Oreos

After recovery, we picked up our appointment card, and headed to the service level for E’s dental appointment. It wasn’t scheduled until 3:20pm, and it was only about 1:15pm, but we checked in early in the hope that someone might not show up, or they might be able to take us early. Nope. So we waited. I ran upstairs to Shoppers Drug Mart to pick up his prescriptions, as well as some Tylenol & Advil for myself, but that only took about 15 minutes. The oncology team had only approved a checkup – no work or cleaning today – and when it was our turn, we were in the room for literally 5 minutes and then we were on our way.

We had forgotten the medication calendar, so we went back to the 8^th floor to find the oncology pharmacist so we could pick that up. After that, it was back to the main floor, then over to the elevator to the parking garage, and down to P4 to pack up and get going. Of course, because it was around 4:00pm, we were in rush hour traffic, and it took us another 2 hours to get home. En route, we had to message my mom to pick J up from after-school care, because they close at 6:00pm, and it became pretty apparent that we weren’t going to make it in time.

Tired, and finally arriving home, there was a nice dinner of roasted veggies and chicken in the oven. In the process of sitting down for dinner, my wife noticed that E was feeling warm. She took his temperature, and he read 38.2°C, which is over the fever temperature of 37.5°C, so this meant paging the on-call oncologist. Worst-case scenario, we’d be going back to the hospital. I was confident, defiant even: “There’s no way we’re going to a hospital tonight. They just did his bloodwork 10 hours ago, and they know he has an ear infection. He has a fever because of the ear, so we’re staying put, they’ll just tell us to get him started on the amoxicillin”.

Nope.

The oncologist called, and I gave her all of the information about the day: his good counts, the ear infection, the lumbar puncture, etc. She told me that unfortunately, we’d have to return to the hospital, because things can change quickly, especially in cancer patients. The good news though, we’d only have to go as far as our satellite clinic at Scarborough Centenary, so we gave the 7^th floor pediatric unit a ring to let them know we were coming in. We gobbled up our dinner, packed an overnight bag just in case we had to stay, arranged for my mom to stay a 2^nd night to be with J, and then hopped in the car to make the drive.

We arrived at the hospital around 7:30pm, and were surprised to see that there was another family in POGO waiting room, also in with a fever. We had to wait a bit, but the nurses saw us, accessed E’s port (for the 2^nd time that day), drew blood, and then attached him to a drip on an IV pole. Have I mentioned how fun it is having a 3 year old attached to an IV pole? They have no concept of, and don’t care that the line from that pole is attached to them, and they can rip it out, or knock over the pole if they aren’t careful. There were a few times he almost cause a crash, but he had also had a long day, and before long, he was content to snuggle & watch YouTube. A while later, we saw the pediatrician, and we answered her questions as best as we could. It took quite a while for the blood results to come back, and though they ended up being fine, the pediatrician wanted to add some antibiotics to his drip before discharging us. By about 11:00pm, I was feeling sick from being exhausted, so I had a little off-and-on snooze on the couch. I woke up around 12:30am and the antibiotics were done. We helped to hold E while the nurse de-accessed his port and applied a band-aid. Shortly after, we were in the car, and on our way home, around 1:00am. We crawled into bed around 1:30am. Surprisingly, it took me a little bit to fall asleep, but I was out before 2:00am. J, not normally an early riser, had me up the next morning around 5:45am, so I’d managed about 4 hours of sleep. I wasn’t feeling great, I couldn’t think straight, and I didn’t think I would have been any help, so I took Thursday as a sick day.

A completely exhausting day, but that’s our story of visiting 2 hospitals in the span of 24 hours. Hopefully it won’t be repeated very soon, if ever.

112) Unfocused thoughts

I had been feeling somewhat better for a while, but I’ve had an excess amount of anxiety for the past couple of weeks. I feel like my attention and thoughts are unfocused, like a flat stone skipping across the surface of the water. I’ve wanted to write, but I only seem to think of a small amount of material before my brain moves on to something else. It shouldn’t matter how much, or how little I post, but lately it seems my output would be a number of posts, each only about 3 or 4 sentences long.

It’s Snow-vembrrrr here in Southern Onterrible. On Remembrance Day, the snow started falling, and we ended up with a little more than 10cm on the ground. Not too much, but it broke a record for that day, and it’s early for this part of the country. It also got pretty cold – last night it went down to -17°C. Not as cold as other parts of the country get, but again, colder than normal for this part of the country at this time of the year. Had to shovel, had to clean cars, and my washer fluid froze a bit because I hadn’t yet put the winter one in. A good long 1.5 hour sit on the 401 on the way home can do wonders for warming up the engine & thawing things out.

E’s had a cold for almost 8 weeks now. The poor little guy. He can’t catch a break. His nose has been constantly running, but luckily, no fevers. He’s dealing with a bit of a rash or eczema on his forehead, and we also think in his hair. It’s chemo related, and not too bad, but it’s noticeable, and it seems to bother him because we’ll see him scratching at it. For now, we’re treating it with a calming, moisturizing lotion recommended to us by our RN & nurse practitioner. He’s been so tired lately. Recently, he fell asleep at 4:30pm, and he’s had numerous nights of going to bed at 6:30pm. He’s had a cough for a while, but over the last several days, it’s developed into more of a wet sounding cough. I’ve been worried about it. I’m often worrying about pneumonia, because it is a somewhat common occurrence in cancer patients. We took him into clinic today, and his counts were fine, and his lungs sound clear. The lab seemed to have misplaced his blood sample today, because it was about 2.5 hours waiting for the results to come back. Usually it’s about 30 – 60 minutes. My wife & I were both starting to worry that they had found something, or there was going to be bad news which required them to test things more in-depth. All was fine though.

Two weeks ago, I sprung for some steelies & winter tires for my car. I had an oil change done as well. About a day after the oil change, I noticed a greasy/hot metal smell coming off the engine. I was worried, but I looked on Google & spoke to a few people who are knowledgeable about cars, and attributed it to some spilled oil during the change. It would burn off after a couple of days. The smell didn’t go completely away, but it diminished significantly, so I was in the clear. Or so I thought... Last week, while driving J to his playgroup in north Oshawa, a few electronic things in my car started randomly turning off. The car lurched a couple of times, and then the engine died. I coasted to the side of the road, pulling far onto the shoulder, and called a tow. $750 in repair bills later, I found out that what I was smelling was my alternator frying itself. I also needed a new battery, but the it was covered under warranty. That made it a little less painful.

A while back, E figured out how to undo the seatbelt in his highchair & climb out, so meals are a bit more difficult having a 3 year old perpetual motion machine in the house. The stroller is made by the same company as the highchair, so if we take him anywhere, he can get out and go on a toddler rampage. Until about 3 weeks ago, I was bringing him with me when I went grocery shopping. No more. I don’t know how he does it, but he can Houdini himself out of the shopping cart when the seatbelt is on tight enough so he shouldn’t be able to move. Then he’ll be running up & down the aisles, putting everything in the cart, trying to run away from me, or throwing himself on the floor in a tantrum when he doesn’t want to listen. Taking him out to visit is no better. When it’s time to leave he’ll shriek a glass-shattering scream, throw himself on the ground, or pull your hair/scratch your face/headbutt when you try to pick him up. These are probably fairly common toddler things, but they pile up. Especially with being under chronic stress.

With the early snow/cold, I haven’t had a chance to get my wife’s snow tires on her car. I’m thinking about that, and wanting to get it done. It’s probably going to be a wait now to get it in, because I haven’t been able to in the past couple of weeks. Not enough time in the day.

We also got E’s flu shot done today at the POGO clinic, after we found out the counts in his bloodwork were good. I went out to a local pharmacy after we got home, and had mine done. My wife is planning on getting hers tomorrow, and we’ll get J done on Friday or on the weekend.

If you don’t have a medical condition which prevents you from getting a flu shot, go out and get one. Please. You might think that you don’t need one, that you’re young & healthy, and can fight off germs. The flu is a serious illness, and if you have a weapon to protect yourself from it, you might as well use it. Plus, you’re contributing to herd immunity to help protect the vulnerable population of people with compromised immune systems, like my son. If you develop immunity, you won’t catch it, and more importantly, you won’t pass it on to someone else.

I don’t write about it much, if at all, but work has me worried a bit lately. Not the actual work, but potential changes down the road. Someone is trying to impose a change management system where we’d spending more time doing paperwork & red tape stuff than actually helping the client. I spoke to my boss about it, he agrees with me, assures me that it’s a ways off from being implemented, and insists management will not let it be implemented as it is currently proposed. It has me wondering what the point of everything is if administrative tasks inhibit my ability to provide service to the client. I mean, these people who approve the changes have no idea about what they’re approving, nor do they have any idea about what I actually do.

Our next SickKids visit is quickly approaching. I always feel a bit on edge before going. Whether it’s holding E, & trying to soothe him while he’s frightened as the medical team is about to administer his anaesthetic, waiting outside during the 5 – 10 minute procedure that seems to take forever, or trying to calm him down when he wakes up early. SickKids day gives you quite a bit to think about.

Halloween came & went for another year. I don’t know what it is, but I wasn’t feeling it this year. I love Halloween, but this year, I don’t know. The boys had fun at least.

Things have been a bit better for the past couple of weeks, but for a while in October, little E was feeling a lot of nausea & had numerous vomit sessions. He’ll tell us now “I feel sick”, or “tummy feel yucky”, and when he says that, we can give him ondansetron for the nausea. It’s difficult to see the nausea combined with his cough & stuffy nose. That combination was particularly bad 3 – 4 weeks ago when he’d start coughing to the point of making himself sick. This would mostly occur in the middle of the night, or right about the time we would wake up, and E would be asleep, or half-asleep. For the most part we could tell & we’d whip him into the bathroom to put him in the tub. It’s an awful feeling to rub your cancer patient son’s back to try and comfort him while he brings up bile.

I had an... umm... interesting? encounter this past weekend. I took J to his gymnastics class. During said class, he somehow managed to knee himself in the face, so he had a bruise under his eye. Already feeling anxious that people are going to be thinking the worst when they see me with a 5y/o who has a bruise on his face, I took him to a doughnut shop for a treat when the class was done. Long story short, some bible thumper tried to recruit me into his church? cult?, and followed us out to the car to give me his card. I’m sure he was harmless & there was no nefarious intentions, but it was weird. No thanks.

Earlier this year, there were some changes to E’s leukemia treatment protocol. I wrote about it before, but it basically boils down to getting vincristine & steroids once every twelve weeks instead of once every four weeks. I am half-waiting for the other proverbial shoe to drop, which is the extra year of treatment. Many hospitals are dropping the third year of treatment for boys. Girls do ~2.5 years of treatment, boys do ~3.5 years because past studies have shown that leukemia can hide in the testes, so they do an extra year to make sure they got it all. Now, the thinking is that the research which supported an extra year for boys was flawed & hospitals have been dropping the third year of treatment. It would be good in a way that he wouldn’t be getting more drugs that may be doing who-knows-what to him now, or setting him up for late & long term effects down the line. We’re past the 2.5 year mark, so if a decision is made, they could potentially call us one day & tell us to stop the meds, E is done treatment. There’s a whole bunch of thoughts/feelings about that: are they correct?, why change the rules in the middle of the game?, are you sure this won’t affect his outcome? Again, good if he has to take less drugs. Bad because it makes me worry. This last thought might be a bit selfish, but it would be anticlimactic. The whole counting-down-until-the-last-chemo-dose-and-hospital-visit would be taken away from us. Poof, you’re done. I feel like I might be a bad person for thinking that.

We recently got the ball rolling for E’s wish. He’ll get a wish from Make-A-Wish Canada, we won’t have to choose between two options, because Make-A-Wish Canada and The Children’s Wish Foundation Of Canada are merging into a single organization: Make-A-Wish Canada. I’ll ask him about what he wants for his wish, and he answers. 99 time out of 100 his reply is “Ummmm...dream come true”.

That’s a good place to end it, goodnight!

111) Hallow-e’en

We continued a 5-year tradition & brought the boys to my in-laws’ house for a night of trick-or-treating with their cousins. One family couldn’t make it last night, so there was just J, E, and their older cousin, C.

Even though he’s 3.5, this was pretty much E’s first Halloween. On his first Halloween at 6 months, we dressed him up, but we didn’t take him out. At 1.5 years, he’d only been diagnosed with leukemia 3 months prior, so we dressed him up, but did not take him out. Last year, at 2.5, we dressed him up, and decided to take him out, but he only made it to 1 house. He didn’t understand what was going on, he didn’t want to go up to the door, he didn’t want to hold my hand, and he didn’t want to stay with the group. When we stopped him from running away, he threw a tantrum, lay down on the wet ground, and proceeded to roll around. That was a wrap on his trick-or-treating in 2018.

This year though was different. We hyped it up to him, we told him he’d get chocolate, and candy, and he was excited about dressing up as Cookie Monster. He went up to the first house, followed his older brother & cousin, and we helped him learn his “trick-or-treat”, “thank you”, and “Happy Halloween” phrases & when to use them. He was grinning ear-to-ear walking up the street with the two older boys. They eventually got ahead of us, but that was okay because they were with my sister-in-law & her husband.

E as Cookie Monster

After having been out for about 10 minutes, we were walking down the sidewalk between houses, and out of nowhere, E exclaimed “Wow! Halloween fun!” He was really good about staying with us, holding our hands, walking up and down the walkways, and minding his manners. About halfway through our route, he started to want to grab his own candy from the bowls, and he also started to insist on closing people’s doors for them. That was it from a behaviour point of view, and most people just chucked, or smiled while I was apologising.

J as Spider-Man

The whole day had been a complete washout with heavy doupours, but for about an hour, starting at about 6:45, the rain stopped. He did really well, did a fairly big route, and he wanted to keep going, but at that time, it started to spit with rain again. We got him back to nanny & papa’s house, and I went out to catch up with J. Not long after, the rain picked up to a heavy drizzle, and we decided to call it a night with the older boys. With everyone now back at nanny & papa’s house we had a quick sort through the candy, followed by a mini-gorge of sugar. After that, we packed up, and drove home. Both boys were exhausted, fell asleep in the car on the drive, and stayed asleep while I transferred them up to their beds.

Happy Hallow-e’en, everyone!