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.

118) Yet another hospital visit

I wrote most of this on Wednesday January 8^th, but I was unable to completely finish. Today is Friday the 10th, and I’m going to do an edit of what I started, and finish it up so that it hopefully feels cohesive.

I’m going to start out by saying E is fine, but on Tuesday January 7^th, he woke up at 4:30am with a fever. Even before taking his temperature, I KNEW that we were going to be making yet another trip to the hospital. When we did grab the thermometer, it read 38.2°C. My wife made the call to our satellite, and they suggested calling SickKids, because we were supposed to be going there the very next day. She paged an oncologist, and they said yes, we should come to SickKids. She graciously let me sleep a bit more because I’d be driving, and she packed up some things we’d need. J woke up while my wife was packing, and our debate was whether to bring him with us, or wait a bit until before-care opened so we could drop him off.

The decision was made to drop J off at before-care, have him go to school, and then get family to pick him up at the end of the day. We dropped him off, and we were on our way. Google Maps said the best route was the 401/DVP, and while it was slow, it wasn’t as bad as I was expecting.

When we’re at our satellite hospital, we go directly to the pediatric floor into the POGO clinic, and the nurses will access him, draw blood, and do whatever other things are required. At SickKids, it’s a little different. You go in through the emergency department. If there’s a line, you just skip it, and tell the triage nurse that your son is an oncology patient, and that we called ahead to say we’re on our way. They’ll put you in an area away from the potential sicknesses & germs to do height/weight/temperature, etcetera. Once you’re out of the waiting room, the Emergency Department at SickKids (if you’ve had the good fortune of never having to go there), is made up of a bunch of private rooms. Each room is maybe 10x10, has a bed, a couple of chairs, a TV, and medical equipment. They have sliding glass doors so you can minimize noise levels to other patients, and a curtain you can draw for privacy. We were put in room 7.

E was accessed, had blood drawn, temperature taken, etc. etc. etc. We briefed our nurse about his condition, his medications, what’s been happening over the past several weeks, what part of treatment he’s in, and a number of other questions they asked of us.

Blood results took a bit longer to come back that what we had expected, but it didn’t show too much of a change from Monday, when we had been at our satellite clinic. White counts & neutrophils were slightly down, hemoglobin remained steady, and his platelets were up a bit. His fever had gotten up to 38.9°C, he was given Tylenol for it, and within an hour it was down to 37.9°C. Still high, but much better. Our emergency team told us they were liaising with the oncology team to see whether we’d be admitted.

Around 1:30pm, an oncology Fellow arrived at our room to examine E. He was happy with everything he saw, and said that we would not be admitted, and that we could go home. Before we were able to leave, he wanted an Influenza A swab done on E. He tested negative for Influenza A, but interestingly, the results from nose swab they use to affirm or deny the diagnosis can be done in 5 to 8 minutes. The SickKids ER must have been understaffed, overvisited, or both that day. Don’t get me wrong, I love nurses, and I have so much respect for their jobs, and what they do to care for total strangers. They are the lifeblood of our medical system, and our hospitals, and clinics would completely fall apart without them. I was however, getting a little irritated and anxious that a nose swab and de-accessing E’s port took two hours. From when we were told we could leave a bit after 1:30pm, we weren’t able to leave until a bit after 3:30pm, putting us right in the thick of GTA rush hour traffic. Also, before leaving, we were told that E’s bone marrow aspirate scheduled for the next day would be postponed to a date and time TBA.

It was a slow, almost 2 hour drive home. My wife had her mother pick up J from school, because you can never be certain that you’ll make it in time. Leaving SickKids, Waze said we’d be at home by 5:25pm, but we didn’t roll into the driveway until about 5:50pm. We actually would have had time to pick up J, but we would have just barely made it.

We scrounged up some dinner for ourselves, and the kids. After, I took E, my wife took J, and we put the kids to bed. I made it down to the couch, and I was hoping to unwind a bit & watch something, but I faded, and passed out. It was a long, exhausting day.

117) Good news, everyone!

We survived the weekend. I think my wife and kept an extra-watchful eye on E, checking for new bruises, whether old ones were fading, checking his temperature, and mulling over his energy levels.

He didn’t run a fever at all over the weekend, and we noticed only a couple of new bruises pop up. A few of the pre-existing bruises on his legs began to shrink, and lighten up. As well, the purple circles under his eyes stopped looking so dark, and large. As for his energy, he is still tired, but he spent a good chunk of the weekend playing, chasing & fighting with his brother, so he was a bit more back to his usual self.

Today was the trip into our satellite clinic for bloodwork. We had to put an EMLA patch on him this morning. Today, E’s port was accessed to take blood in case his levels had gone down. He was left accessed from after the blood was taken until we received the results in case he needed a transfusion.

The lab must have taken about 2 hours to get the results back to us, and I was starting to panic, thinking that something might have been wrong, or that they found something, but no, they were just slow today. Both his hemoglobin, and platelet counts are up, and his white cell counts (including neutrophils) are at a good level. Despite being up, his hemoglobin & platelets aren’t where they should be, but there’s a current upward trend. We’re still on a chemo hold from the oncology team at SickKids, and we’ll be there in a couple of days for E’s bone marrow aspirate.

So, good news for now...we just need to keep holding our breaths, and treading water until he receives the full checkup at SickKids.

116) Club Med Reloaded

On New Year’s Day, E came down with a fever. He hadn’t been himself for all of the day. He woke up crying, and was extra cranky – not his usual self. By 2:00pm, he had started to feel a bit warm, but he didn’t have a fever. He was also exhausted, and I took him upstairs for a nap, which he never does anymore. We could tell that he was a bit run down, with extra bruises on his legs, dark purple circles under his eyes, and a pale to yellowish tinge on his skin. We let him sleep a couple of hours, and woke him around 4:00pm. Getting up from his nap, he was HOT. I had a feeling that we’d be making a trip to our satellite hospital. Putting the thermometer under his arm, I saw the numbers race past 36 into the 37s, and finally stop at 38.2°C. Yup. A hospital trip. What a way to kick off the new year.

My wife called her mother, and made arrangements for he to come over to watch J. We threw together some food, as well as some clothes for ourselves & E. Upon learning that we had to take his brother to the hospital, J immediately told us that he didn’t want us to go. He really missed us & his brother when we went in for the 8.5 day stint from late November to early December. After telling him sorry, that he couldn’t go with us, and that he’d have to stay with Nanny, he proceeded to tell us that he had a fever too, and that he also needed to go to the hospital. My heart sank.

At the hospital, it was the usual access E’s port, draw blood, send it to the lab, and wait. After a bit, the on-call pediatrician came in to speak with us. She told us that E’s neutrophil counts were at 1.5, and were fine. I celebrated prematurely. She then said that his hemoglobin counts were at 50, and his platelets were at 25. Normal hemoglobin numbers are between 110 and 160 for children, and normal platelet numbers are between 150 and 400 for children. Hemoglobin is transfused when the numbers drop below 75, and platelets are transfused if the numbers drop below 40. The low hemoglobin explained the tiredness and the crankiness, while the low platelets explained the bruises we’d seen show up on his legs, as well as the little bits of blood with his runny nose. My wife and I had both increasingly grown more concerned over him on the 30th-31st-1st, and she said that we were going to take him in for bloodwork on the 2^nd, when the satellite clinic re-opened. Well, the fever forced our hand, and we went in.

Blood was ordered, and overnight, as he slept, E was transfused with hemoglobin over the course of several hours. Around 6:30am, they started the platelet transfusion, and that one took less than an hour.

The next day, January 2^nd 2020, bloodwork showed that E’s numbers had jumped, but they weren’t great enough to be discharged. He would need another transfusion of hemoglobin, and then we’d have to stay one more night so that our nurse practitioner & oncology team could see that the numbers were still trending upward. We were also told that the team wanted a bit more investigation into what was going on. Two hospitalizations within a month of each-other during the maintenance phase is not unheard of, but it doesn’t happen very often. A couple of more blood tests were to be done to check E’s liver function, as well as his bone marrow function. They also wanted to do an ultrasound to check for an enlarged liver, or spleen. There were a few options of what could be happening:

i) too much chemo is suppressing hemoglobin and platelet production by the bone marrow

ii) the liver, and/or spleen aren’t functioning properly, and are breaking down hemoglobin & platelets

iii) ongoing virus

It turned out that one of the tests showed that E’s marrow wasn’t making a whole lot of hemoglobin & platelets, so it was suspected that he’s just not tolerating his current dose of chemo. The team still wanted to go ahead with the ultrasound of his abdomen, just to rule that out, even though the other test showed that his liver was functioning properly. This is the part where, chronic stress, overtiredness, and anxiety combine to take a toll on you. I had convinced myself that the team was suspecting that E might have had a solid tumour in his abdomen. I “knew” that they were telling us that they wanted to check for an enlarged liver so as not to scare us, when in reality, they were looking for a malignant mass. My mind was racing, I had problems focusing, and even though I slept that night, I woke up feeling as though I had been run over by a truck.

That whole day (January 2nd), E just sat in bed and was content to watch cartoons on TV, or on YouTube. If you’ve ever met E, you’ll know how out-of-character that is for him. The kid barely sits still, and will only stay in one spot when he’s sleeping or in a car seat. When the 2^nd transfusion of hemoglobin was done by later in the afternoon, you could see that there was more colour in his face. He started acting more like himself again, and the day spent in bed came back to bite us when he decided he wanted to get up and play. He was up and running from about 8:00pm to 10:30pm, when we took him back to our room and told him that the playroom was closed, and that it was bedtime.

We woke up the next morning (January 3rd), and we weren’t allowed to feed E, because they were going to do the ultrasound, and they needed him to fast. Someone from hospital transport came up to our room just before 9:00am. We followed transport downstairs to imaging, and assumed that they were ready for us. Nope. Take a seat in the waiting room. We waited 50 minutes before we were called for E’s appointment. 50 minutes of a hungry, crying, unhappy 3 year old in an adult waiting room with nothing to amuse him. 50 minutes we sat there trying to keep him happy, and for 50 minutes he kept asking us for milk & food. You can’t explain to a 3 year old why they can’t have food when they’re hungry. Finally it was our turn, and it was all over in about 5 minutes. After, we went to leave, and the ultrasound tech told us that we had to again wait for hospital transport to bring us back to our room. I stepped into the waiting room for all of about 2 minutes, until I said FUCK THIS, and took my son back upstairs to his room because the kid was hungry, and he hadn’t eaten in over 12 hours.

The ultrasound came back clear, showing no enlarged liver. Not a thing was hinted, or even mentioned about a tumour, or looking for a tumour, so I could finally stop holding my breath from the worst-case-scenario that was self-inflicted by my own thoughts.

That day’s bloodwork had shown that E’s hemoglobin was continuing to climb, but that his platelets had slipped a bit. Everything was still in the okay zone, so no more transfusions were required. We were told that we would be discharged, but that they wanted to see us back on Monday for followup bloodwork. We were also told that SickKids wants to see us one day next week so they can do a bone marrow aspirate (BMA) on E. Normally this type of test is only done when the doctors are trying to diagnose leukemia, or to confirm a relapse. Our nurse practitioner passed along the message from the SickKids oncology team, and very emphatically said that we’re not to worry, and they don’t think it’s a relapse. They want some of his marrow to test for viruses which might explain his ongoing low counts, and this type of test can only be done at SickKids. I’m trying to stay calm, I’m trying to stay grounded. But worrying is what I do best. My brain is making up worst-case-scenarios and is trying to run with them. I don’t dis-believe what we were told – I don’t think they’re secretly checking for something without trying to worry us. If it were a potentially serious issue, they would tell us to get to the hospital NOW. They don’t mess around with those sort of things. But it’s difficult to not worry, and to not think about those what-if scenarios. I’m not it a great headspace right now, and I unfortunately don’t think that’s going to change until we have the results from the bone marrow aspirate.