125) I screwed it up

October 6th is E’s EOT date, so we have less than 4 months to go. We’re in the proverbial home stretch, and I did my first big medication screwup this week. We’ve missed a couple of doses – it happens, but this was something different. E receives his methotrexate on Wednesday, and gets 4 x 2.5mg pills for a total dose of 10mg. Normally, we pick up our prescriptions from the pharmacy at SickKids. At our last visit, I forgot to ask for a refill of this particular medication, so we got a prescription from E’s nurse practitioner, and filled it at a pharmacy near home. Unbeknownst to me, they gave us 10mg instead of the 2.5mg ones. On Wednesday, when it was time for his methotrexate, I dosed him with 4 x 10mg pills. Since the pills were the larger dose, I should have only just used one.

The 10mg pills were the exact same size & shape as the 2.5mg ones, so there wasn’t a visual cue that something was different. There were only 4 pills in the bottle & that didn't strike me as strange because pharmacies are restricting the amount of pills that are given out due to COVID. The pharmacy we picked up the pills from was the same chain, and should have had access to E’s medication history. They should have attached a visible note, or given a verbal message at pickup to let us know that the dosage had changed. I accept some of the blame, because I did not look at the dosage on the bottle before administering them to him, but when you’ve been doing something for the 2+ years we’ve been in maintenance, you start to go on autopilot a little bit.

So, this Friday morning, when I randomly had the epiphany that I’d over-dosed my son on Wednesday, I called E’s nurse practitioner at our satellite clinic. She called the oncology department at SickKids, and called me back a little bit later. They said not to worry; early on in treatment their methotrexate doses are much much higher than what he accidentally received this week. The most likely thing that will happen is that his counts will plunge. They said to watch for abnormal behaviours, vomiting, diarrhea, or bleeding. We are to bring him in for an unscheduled CBC next week to check his blood. He's seemed absolutely fine so far, I haven't noticed any side effects or changes, but I feel terrible. I feel like an idiot, and a moron. I'm both angry, and disappointed with myself. I feel like I let him down, because I'm the adult, and I'm supposed to make sure things like this don't happen.

124) Threes

Today was a bloodwork day for E. We received a phone call from E’s nurse practitioner yesterday, and apparently, today was going to be a busy day, so all appointments were being scheduled rather than their regular informal show up whenever you like policy.

They still have a one-parent-per-patient policy in place, and I drew the short straw, so we packed up, and left the house a bit before 10 am, arriving at the hospital a few minutes before our 10:30 am appointment time.

There are plexiglass booths through the main doors, where you are asked why you’re at the hospital today, and if you have any cough or fever. I was handed a mask & a sticker, and I was on my way to the 7^th floor.

On 7, we were ushered straight into the clinic room. E’s nurse practitioner, registered nurse, and child life specialist were all there today. Because of the one-parent-per-patient policy, I hadn’t seen any of them since early March. My wife took E to his satellite appointment in April, and I took E to his May appointment, but it was a lumbar puncture at SickKids. It’s always nice to see those three ladies.

E was given a once-over by his nurse practitioner, and then we were ready for port access. Well, upon taking off his shirt, we discovered that, surprise, he wasn’t wearing an EMLA patch. He was wearing one at home, and I dug around in his shirt to see if it had gotten stuck to the fabric. Nope. We asked him about it and he said “I took it off”. We asked him where it was, he said “at home”. Sure enough, the next time I was on my phone, a message had come in from my wife saying that she had found the EMLA patch on the floor at the house. They have a fast-acting numbing cream, and that was applied in place of the EMLA patch, but it set us back 15-20 minutes while we waited for it to do its work.

The previous two times E needed bloodwork done, we had problems with his port. He’s almost always required a saline flush before there was blood return. At both his April & May appointments, he needed a clot buster called tissue plasminogen activator (TPA) before we could get blood return, so I had a feeling going in that something like this might happen again. Yup. After he was accessed, his port must have been flushed 6 times, and there was nothing coming back. Around 11:40 am, they administered the TPA, and we were moved over to an empty room to wait it out.

Fast forward to two hours later, we were brought back to the clinic, and it was again attempted to get blood return from E’s port. The TPA sort of worked. The plunger was easier to push in on the flush, but when trying to draw blood back out, it came out in only a trickle. It was better than before, when there was zero blood return, but it didn’t work anything like it should. There was enough in the vial to do the rest of the blood tests & it was finally time to go.

Getting back to the car, there were a couple of dents in the back bumper, and it looks as though someone hit it when trying to back out of a spot. No sorry note, no contact info, they hit it and drove away. Things like that are difficult for me because of the nature of my personality. I tend to get stuck thinking on something, and have problems shrugging it off. With everything going on it the world at the moment with pandemics & social injustice, this really isn’t that important. There are bigger fish to fry.

123) Solo mission

It’s done and finished. The solo mission I went on with E to SickKids was yesterday, and it went well. SickKids currently has restrictions in place so that only one caregiver may accompany a child to an appointment. For the first time ever, I'd be headed there by myself.

We left the house about 7:20am, and made it to SickKids by about 8:00am. There were vehicles on the road, but traffic was not an issue. I’ve heard that many hospitals have opened their gates, and are allowing free parking. This is very much NOT the case with SickKids. There is a security guard posted outside the entrance to the parking garage, and you need to state your business of why you need to go underground to park. After we found a spot on the lowest level, we rode the elevator to main floor, and hung a right. Immediately, you are presented with the following scene:

The screening station, before the atrium

At the screening station, they ask you a number of questions about the health of your child, and you, the caregiver. They mark it off on a form, which you must present at the registration desk where you have your appointment.

Our COVID-19 screening form

After receiving a mask, and putting it on, you were allowed to enter the hospital. E wasn’t given a mask. I think it was because of his age. Even if they gave him one, there is no way I would have been able to keep it on his face. Going through the screening station, there is a physical distancing line you must wait in before getting in the elevator:

The physical distancing line with 2m space stickers on the floor

They’re allowing a maximum of 3 people on an elevator at one time. It wasn’t busy when we arrived. There wasn’t anyone in the line, and the security guard stationed at the elevator banks waved us through to the first door that opened. We pushed the button for the 8^th floor, and took a ride up.

We checked in at the registration desk, then went in to the waiting room for our turn to be called.

E, and me, waiting in the playroom

We didn’t have to wait too long, and we were called to the vitals room. After measuring height, weight, pulse, temperature, and answering some questions, we were off to the next room for E’s port to be accessed.

Unfortunately, his port wasn’t co-operating, and there was no blood return. They had to inject a chemical called TPA into his port, and this is used to dissolve the clot which is likely preventing blood from being drawn. It takes at least an hour to work, so they sent us to the phlobotomy room so that they could collect 2 small vials of E’s blood via a finger poke in order to do a CBC before his lumbar puncture procedure.

After that, it was off to visit our team. We didn’t see E’s oncologist this time, but it was another oncologist that we’ve seen before. She did a brief check up, and chatted with me about how we were doing, and if we had any health concerns about E.

When that was done, it had been about an hour since the TPA was injected, so we went back to the recovery room to check on how his port was doing. The TPA had done its job, and while slow, there was blood return. We returned to the playroom/waiting room to wait our turn. It wasn’t too busy, and only 5 kids were having procedures done. I believe we were the 3^rd ones called, right around 11:00am. By this time E was pretty hungry, since he needs to fast before this procedure. He was crying for milk, and cookies for about the last half an hour until it was our turn. He’s still too young to understand why I’m not giving him any food, and it breaks my heart.

E picked out a Thomas The Tank Engine mini figure out of the treasure box before we went in to the room. I carried him in, the way I always do, but that day he said to me “no daddy, I don’t want to go into that room”, and he tried to grab the doorjamb on the way. A few quick identity & safety checks later, and the anaesthetic was being injected through E’s port, he went limp in my arms, and I helped lay him down on the stretcher before I left.

I waited outside, and the lumbar puncture was QUICK. By that time, I was hungry, and thankful to be able to eat without eating in front of my fasting child. I had packed a lunch because I didn’t want to deal with extra interaction with people by buying my food. I wolfed down my sandwich, and hadn’t even finished my piece of fruit before the door opened, and they wheeled a sleeping E into the recovery room.

He stayed asleep for about 45 minutes, which I think is a new record for him. There was one time he was awake after 5 minutes, but he usually only sleeps between 10 and 20 minutes before he wakes up. He was hungry when he woke up, and the first thing he wanted was milk. After that, he wanted cookies. Oreos are usually his post-lumbar puncture food of choice, so he got his treat.

When his hour of lying flat was done, we walked back to the orange pod, where E’s team is so that we could pick up our appointment card for next time. His next procedure is in July, and it should also be his last one! We took the elevator back down to the main floor, walked to the SickKids Shoppers Drug Mart to pick up his new prescriptions for chemo, and then took the parking garage elevator to get back to the car. The drive home was uneventful, and I think I can honestly say that this was the first time I have ever driven on the northbound DVP where I did not encounter any traffic slowdowns or stoppages.

122) Full of it

If, 10 years ago, we had a conversation where you told me that when 2020 rolled around that a) I’d have a son who’s in treatment for leukemia, b) the world would be in the midst of a pandemic from a virus that’s related to SARS, and c) I’d be out on my front porch on an April afternoon, sanitizing my groceries because of a), and b), I’d have laughed and said that while you have a strange, vivid imagination, you’re full of shit.

Well. Here we are.

It’s been almost two months since I’ve written anything for this space. This COVID19 pandemic, and the lead up to it has caused me an immense amount of stress. I’m keeping this entry short and sweet, but I’m going to try to get back in the habit of writing more frequently.

121) Physically exhausted, and emotionally drained

We had a trip in to SickKids for E’s third last lumbar puncture this week. My mom came out the night before to help us out by getting J to school in the morning. As usual, we didn’t leave as early as I had hoped, and it took about 90 minutes for the approximately 45km trip.

Having left the house without a coffee, I was looking forward to grabbing one at the hospital. Leaving the parking garage elevator, I was dismayed to see the Starbucks line spiraling out of control. We were already behind schedule, so the coffee would have to wait.

We registered, then hit the playroom in 8D for a while. We were called to do E’s check in, and he was excellent about doing his height and weight. He was however, difficult when it came time for the nurses to listen to his chest & check his temperature.

After that, we were off across the hall to the recovery room. It’s not actually used as a recovery room until about 10:15am after the first procedure is done, but it’s also where E has his port accessed after we arrive. He was brave, and didn’t even flinch when they poked him with the needle. He was wearing a numbing patch on the access site, and was distracted by YouTube, but it didn’t even bother him. We ran into a problem though, when the nurses couldn’t get any blood return from his port. The team made a decision to inject tPA (tissue plasminogen activator), a protein that helps to break down blood clots, into his port. The tPA would have to sit for at least an hour before testing to see if it would work.

We were then told to report to the phlebotomy room for a finger poke to collect a small about of blood for a CBC, and E wasn’t very happy when that happened. I can’t really blame him though.

After the finger poke, we reported in at the orange pod, and were put in a room to wait to see E’s oncologist. I stepped out for a needed bathroom break, and on the way, I noticed that OPACC had set up their (free) coffee station. I picked up a cup of coffee, and was talked into having a breakfast sandwich as well. OPACC (Ontario Parents Advocating for Children with cancer) is a registered charity whose vision is to “be the leading voice and expert resource for families and organizations navigating the childhood cancer journey”. They have in-hospital parent liaison programs, community-based parent support groups, and advocate on the behalf of parents and families at the provincial level. Recently, OPACC had a bit of a setback when their expected levels of funding didn’t come through: https://mailchi.mp/fc530165ee3b/ssigx6bqnp-971335 If you’re planning on making any donations in 2020, please think of OPACC, and donate to them here: https://www.canadahelps.org/en/charities/opacc-ontario-parents-advocating-for-children-with-cancer/

After my little aside about OPACC, I’ll jump back to our meeting with E’s oncologist. E was HUNGRY by this time, and he was not happy. I get it. He’s 3. He’s been fasting for ~13 hours at this point. He knows we have food (and Oreo cookies). He wants the food, but we’re telling him no, and he can’t understand why we’re not letting him eat. We made it through the appointment with E’s oncologist, and we left for the playroom to try and distract him for a bit. Shortly after, E’s oncologist came to find us to say that his bloodwork came back fine, and that she was going to do a slight bump on his 6MP, and methotrexate. He was still receiving a half-dose after his parvovirus-driven low blood counts forced E to be on a chemo hold for almost 3 weeks. He’s not back to his previous levels of chemo, but they’ve been bumped up a bit.

A playroom doll with its own port (or PICC line)

Maybe 15 or 20 minutes after that, it was 11am, and time to report back to the recovery room to see if the tPA clot buster had worked. Nope. Back to the playroom, and they’d check again at around noon.

Around 11:15am, someone from the lumbar puncture team came in to see us. They wanted to go ahead with the LP, and not wait on his port which may or may not be unclogged at the next check. The plan was to give E gas to render him unconscious, put an IV line in a vein on his hand, then administer the stronger anaesthetic through the IV line so they could do the procedure. E was still hungry, so going ahead with this would mean an earlier wakeup, and thus earlier food for him. It sounded like a good plan, so my wife and I agreed.

What we didn’t anticipate was how much he didn’t want the gas. I usually carry him in to the procedure room, and I almost always feel his body tense up when we enter the room. He’s unconscious for the needle going into his spine part, so he likely doesn’t worry & anticipate that. I do think he probably remembers feeling frightened, and the weird feeling from the anaesthetic before everything fades to black. A little different this time: I placed him down on the gurney while he was still awake, and then they tried to administer the gas. He started thrashing, screaming, crying, and turning his head away from the mask. I was trying to both hold his head still, and tell him that everything was okay & that daddy is right here. It was pretty awful. It’s a jumble of memories, but I recall him crying while repeating “no no no”, and asking for help with “daddy daddy daddy”. He’s scared out of his mind, and I’m holding him down, complicit in the plan. I couldn’t even get in as close as I had wanted to try and comfort him because of the gas pouring out of the poorly sealed mask. The last thing I wanted was for me to accidentally breathe too much of it in, and then find myself unconscious on the floor. Finally, he stopped most of his struggling, but he still wasn’t quite out. He was still fighting to remain awake, and his unfocused eyes were rolling, and scanning the room. I didn’t notice at the time, but my wife told me later that 3 of the nurses had jumped in to help hold him down when he was struggling.

My wife and I exited the procedure room, to wait in the hall until the time when the door would open, and they would wheel E into the recovery room. My wife and I discussed how awful that had been, and how we hoped there were no more problems with his port access on his remaining two lumbar punctures. The procedure took a bit longer than normal, I’m guessing due to the smaller gauge of the IV access. I sat there holding my breath, numb, and feeling dead inside until they transported him out and into the recovery room. It never gets any easier, having to hold your child while anaesthetic knocks them out. This time was extra difficult.

A pic of the IV in E's hand, taken moments before he woke up

The procedure was finished at about 11:45am, and he only slept for about 15 minutes. His port was tested for blood return around noon, but it was still clogged. The nurses administered a second dose of clot buster. He woke up shortly after that. He woke up in a happy mood, but was hungry. He wanted Oreos, and he mowed through three of them, paused for a bit of milk, and then mowed through the remaining two. He wanted more cookies, but we hadn’t packed more, so I elevatored down to the main floor to grab myself a bite of lunch while picking up more cookies for E.

He was really good about staying flat on his back for the remainder of the required hour. He was administered his dose of vincristine through the IV in his hand, and that’s the first time he’s had that done since day 10 of induction, before he had his port, way back at the beginning. 1:00pm rolled around, and it was time for check #3 for blood return, and this time it worked! The nurse took the extra blood that was needed to do the blood chemistry tests, then finished everything up and de-accessed him.

From there, all we had to do was pick up E’s prescriptions, buy a new parking pass, and then we were on our way home. I was physically exhausted, and emotionally drained, but I felt a sliver of satisfaction that the day was over, and we should only have to do this 2 more times.

120) Oh, you mean people like my son?

Coronavirus. It’s here in the GTA, specifically Toronto. It was only a matter of when, not if. At least that’s my opinion.

I believe there is quite a bit of trepidation over this amongst the general populous. For me (and likely for other parents of children with cancer), this brings up more than just concern. To be honest, I’m feeling quite a bit of angst, worry, and dread. Our kids are immunosuppressed, and aren’t able to fight off germs the way a healthy person can. I do realize they’re saying the likelihood of infection is low, but it’s

The other morning, before it was confirmed that a patient in Toronto had tested positive for coronavirus, I was listening to the radio while driving to work. The news came on, and the top story was, of course, the viral outbreak. I think that was the morning that a patient in Chicago was confirmed as infected. The announcer was stating the facts so far and spoke to the audience saying “there’s cause for concern, but there’s no need to panic. In almost all of the cases that had resulted in loss of life, the patient had been old, had an underlying health condition, or was immunosuppressed”.

Oh, you mean people like my son? Thanks, you just made me feel worse.

119) A light at the end of the tunnel

I don’t even remember the order of things anymore. I had to go and dig through some group messages to remember what happened on what day. Here’s the best assembly of events from my foggy memory & what’s on my phone.

January 10^th was a Friday. We were back at our satellite clinic for bloodwork that day. His hemoglobin counts, and platelets were okay that day, but his neutrophils had dropped. SickKids told us that chemo was still on hold, and that they’d want to see us on the Wednesday of the following week. E was fine at the clinic, but after returning home, he started to develop a bright red rash particularly on his cheeks, but also over his body. Despite this rash, he did not develop a fever with it.

January 15^th, a Wednesday was our scheduled visit to SickKids to meet with E’s oncology team. The rash from 5 days ago had faded, and was no longer presented any visual symptoms. Unlike a lumbar puncture, we didn’t have to be there early early, so we took J to school, and then made our way downtown. Getting out of the car on the P4 level, we just happened to step into a code red, which means fire. All of the building elevators, including the ones to the parking garage were held. Getting impatient, I made the executive decision to take the stairs. My wife & E walked up the stairs under their own power, and I folded the stroller & lugged it up to the main level. By this time, the atrium elevators were again working, and we were whisked up to the 8^th floor. We signed in & then went to the phlebotomy room with E, where, instead of being accessed through his port, had blood drawn through a vein. We didn’t have too much time to chase E around the waiting room before we were called to see the oncologist. By this time, the initial blood results were back. Hemoglobin & platelets were about the same, and his neutrophils were slightly down. Our oncologist re-iterated that she didn’t think that E had relapsed, but she did want us at our satellite clinic on January 21^st for bloodwork. If, by that time, E’s counts hadn’t fully recovered, we’d be back at SickKids the following day (January 22^nd) so E could get a BMA done alongside a lumbar puncture.

On Tuesday January 21^st, we went to our satellite clinic. Before anything was started, we were told that one of the viral tests of E’s blood from SickKids had come back, and he had tested positive for parvovirus. One of the variants of parvovirus, B19, is commonly known as slapcheek, slapped cheek, and Fifth disease. This parvovirus diagnosis would explain the red cheeks & rash from 10 days ago. Blood was drawn, and E got to rummage through the treasure chest. The oncology clinics have a box of toys, games, books, etc. that the kids can choose from after having blood drawn, received chemo, or some other procedure. It’s nice that they get to choose a little reward each time, for their bravery. Receiving partial results from our nurse practitioner, (hemoglobin & platelets in the normal range) we went home to wait. SickKids called around 4:00pm, with the rest of the results, and the news that E’s counts had made a complete recovery. There was no need to drive downtown for a bone marrow aspirate the next day! The chemo hold was over, and we were to start him on a half-dose of his 6MP, and a quarter-dose of his methotrexate. His lumbar puncture would revert to his regularly scheduled date in February.

Almost immediately, I felt that a 200 pound weight had been lifted off my back. The stress and anxiety from this stretch of E being unwell doesn’t stop on a dime, but it should start to taper off over the next little while. It’s been an awful start to 2020, but hopefully we’re getting the garbage out of the way first, and the rest of the year will be better.