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.

115) Club Med

I started writing a post a couple of days ago. I finished my first paragraph, and was halfway through my second when I went to save the document. My software crashed, and ate my work. I attempted a recovery, but all I was able to retrieve was a blank document. I thought about a do-over, but I was frustrated, and decided to abandon it instead of re-writing. My lost post was about our hospital stay from late November to early December. During our stay, I was fairly open and candid about what was happening, and I’ve debated re-hashing the story, especially having to do a re-write after having already starting. In the end, I thought back to one of the reasons why I started writing. I wanted to immortalize our, and E’s experiences. E is too young to remember most of this, and he’s obviously not going to write any of it down. In the end, even though many people who might read this are already aware that we were in the hospital for an extended stay, it is part of our story, and deserves to be recorded here.

Day 0: Thursday

I received a text from my wife on Thursday November 28^th in the afternoon. E had been dropped off at my in-laws’ house, she was leaving for work, and E had an elevated temperature. She asked if I could leave work should E’s temperature spike to a full blown fever. E was okay for the afternoon, but in the evening, his underarm temperature jumped to 37.9°C, so I alerted our satellite hospital we were on the way, grabbed some hospital-stay food, threw a couple of bags together, and drove to Scarborough Centenary. I was fairly sure we wouldn’t be staying, but I didn’t want to get out there and find myself up the proverbial creek should things go sideways. E was accessed, blood was drawn, and then I tried to contain him in the POGO room. A couple of hours later, our nurse came back with the results of the bloodwork. Anything below 0.5 for neutrophils is considered neutropenic, and neutropenia + fever = hospital admission. The nurse had a bit of a look on her face & told me that E’s neuts were 0.4, so we’d be staying. @#$! I carted our stuff into room 737, blissfully unaware that this would become our home for the next 8.5 days.

Day 1: Friday

E had bloodwork done early in the morning, and by about 8:30 – 9:00, we found out his neutrophils were still 0.4. At home, my wife got J ready, and delivered to school, and made arrangements with her mom to pick him up afterwards. She packed her own bag, and joined me at the hospital mid-morning. E is an energetic, and exhausting kid, so we decided that we were both going to stay at the hospital and take turns chasing him around because he never sits still. Nanny had a sleepover at our house with J, and we were able to do a video chat with him to say hello.

Day 2: Saturday

Daily bloodwork: neutrophils were still 0.4. At the time, we were hopeful that they’d jump up to or above 0.5 on Sunday morning, and they’d be able to discharge us. That morning, my wife returned to the house to grab some more clothes & food, and also to pick up J. While my wife was gone, E tugged a little too hard on the line from his IV to his port. The needle in the port didn’t come out, but it dislodged enough that the drip wasn’t going in properly. Instead, the saline was pooling under his skin, and some of it was leaking out the needle hole. I only discovered it because E’s shirt started getting wet in a circle around his port. I thought he might have spilled water on himself, but when I lifted his shirt, the dressing around his port was all soaked, and I quickly figured out what had happened. I carried him to the nurses station, and asked if someone would be able to re-access him. My wife returned after lunch, and we had both of the boys with us at the hospital on Saturday afternoon, and overnight. The pair of them were their usual matches-and-gasoline selves when they’re together, and were running around the floor chasing each-other, laughing, shrieking, and doing their bouncing-off-the-walls boy things. I was horrified, and was (unsuccessfully) trying to keep them calm, under control, and quiet. Luckily, there were very few other patients in the hospital at the time, and the nurses were happy to see the brothers up & about, and having fun.

Day 3: Sunday

Daily bloodwork: neutrophils dropped to 0.3. That was a bit of a punch to the gut, since Sunday was >48 hours, and we were hoping to be released if his neuts had have bumped to 0.5 or above. We had port access incident #2 on Sunday. I had picked up E to carry him back to our room for a diaper change. When I set him down on the bed, I noticed that his shirt was somehow covered in blood. Lifting up his shirt, I noticed that the cap on the end of the access line tubing had somehow came off, and blood was gushing out. There are little clips on the tubing to clamp off the flow & I though quickly enough to activate one, and that stopped the blood. We called the nurses in, and they checked him over. He didn’t need to be re-accessed, but they brought a spare cap for the end of his access line, and attached it, to permanently solve the blood issue. Also that day, one of our nephews was having a birthday party that afternoon. Due to the neutrophil counts dropping, we obviously weren’t going to make it to that, but we could still get J there. We asked for a day pass, which the on-call pediatrician reluctantly gave to us. We had to be back by 6 for E’s next antibiotic dose, so we packed up J, and E, and drove through a snowstorm to my in-laws’ house. We dropped off J, and they would take him to his cousin’s birthday party. We returned to our house to yet again grab a few more clothing items, and stopped at a grocery store to pick up some food to keep in the hospital room. Because of the snow & gross road conditions, J slept over at my in-laws’ house that night & my mother-in-law drove him to school the next morning.

Day 4: Monday

Daily bloodwork: neutrophils dropped to 0.1. Our regular oncology team returned, and promptly told us that if they had have been working on the weekend, they would have sent us home Sunday. E’s fever had been gone since late Thursday night, and 0.3 neuts weren’t terrible, especially when weighing isolating yourselves at home, versus all the germs E could possibly pick up in the hospital, including from the shared toys. Now that we were at 0.1 neuts, we definitely wouldn’t be going anywhere. Arrrrgh. While chasing E around, I noticed there was quite a large conglomeration of nurses around the nursing station. Two weeks ago, when we had to take a trip in to the satellite hospital for fever, after having had been at SickKids during the day, there was a really nice & pregnant nurse who had been taking care of us. It turns out she had her baby over the weekend, and she was bringing him up to the pediatric floor for an appointment. It was nice to be able to bump into her to pass along our congratulations.

Day 5: Tuesday

Daily bloodwork: neuts held steady at 0.1. Other counts were dropping as well, and his hemoglobin was down to a level where the standard procedure is to give a transfusion. Blood was ordered, and a few hours later, some O- arrived on the floor, E was hooked back up to the IV, and he received the transfusion. By the time it was finished, you could notice a difference in him. E had been quite pale the past few days, and now you could see colour back in his face. He ended up having a small reaction to the transfusion; he had some small hives appear in various places on his body. It’s not an uncommon occurrence, and E was prescribed Benadryl every 12 hours. Tuesday was also the day that we received a Love Box from The Super Sophia Project. There were cars, crayons, paints, and a few other nice goodies inside. E let out a shriek of excitement when he saw the cars. He was so excited!

Day 6: Wednesday

Daily bloodwork: neuts held steady at 0.1. By this time, the days are turning into a blur, and the frustration is creeping in. I really don’t remember much about Wednesday, other than I went back to the house to bring home dirty laundry, and to pick up clean clothes & some more food. At this point, E had been on antibiotics for 6 days, and his stools were basically liquid. His poor little bum was so chapped & red, and he was soiling through his diaper to his pants almost every time he went. Job #1 at home was to get as many clean pants for E as I could possibly find. My mother-in-law was still staying at our house with J, taking care of him, and getting him to/from school. Wednesday was the last day she was able to help, so after that, we had to call in the cavalry.

Day 7: Thursday

Daily bloodwork: neuts still held steady at 0.1. Another day where we wouldn’t be getting out, though every day, our nurse practitioner was advocating for us to go home to our oncologist at SickKids. We heard that we would likely be discharged the next day, a Friday. Our oncologist wanted one more day of bloodwork, and she was actually more concerned to see which way E’s hemoglobin was trending after Tuesday’s blood transfusion. My mom came out on the GO train; I picked her up at Guildwood, and she came back to the hospital for a quick visit before driving my car home so she could pick up J from school.

Day 8: Friday

Daily bloodwork: neuts still held steady at 0.1, but our oncologist was satisfied with E’s hemoglobin levels, so we were going to be discharged in the afternoon! Finally! Our oncologist had also said that E’s immunoglobulin levels were low. This could be the reason why he’d had a cold hanging on since the middle of September, and why his netutrophils cratered at 0.1. It wasn’t a rush, we didn’t have to do it that day, but they wanted to give him an infusion of immunoglobulin, also known as IVIG. Immunoglobulin itself is not blood, but it is a blood product, and there is a small chance of having a reaction to it. We decided to proceed with the IVIG despite the small risk, because it would be a boost to his immune system, and also because Christmas was on the horizon. We’d just had 8 days in the hospital, and we didn’t want a repeat of 2017 when we spent Christmas in the hospital. Because of the risk of a reaction, vitals are taken before IVIG is started. It begins at a low rate, with more vitals being taken about 10 minutes later. Assuming everything is okay, the rate of flow is increased in steps until it is at full flow. Everything went okay with E, and the flow was stepped up to max. His vitals were checked on the max setting, and he was fine. About 5 – 10 minutes after the check of his vitals is when things started to to sideway. E stood up, hunched over, and started grunting like he had to poop, or his tummy hurt. Shortly after, he started shaking uncontrollably. I ran to get our nurse practitioner who stopped the infusion, gave him a steroid, Tylenol, Benadryl, and oxygen. E was having a bad reaction to the IVIG at full flow, and this caused his temperature to spike, and his heartrate to jump to 180. The shaking was a by-product of the fever. Normal resting heartrate for a 3 year old should be around 120. I wasn’t overly impressed with the on-call pediatrician, who took his sweet time coming down to our room from the ACU (acute care unit). He didn’t even check E over, he just stepped into the room and told us that the reaction was because he couldn’t handle the IVIG at full flow. He said re-start it at a lower rate, let him finish up, and then he left. Uhhhhhh, @#$! you – there’s no way E was getting any more IVIG that day after that sort of reaction. Our nurse practitioner & RN agreed with our sentiments 100%. E had gotten about 75% of his dose, it would provide a boost to his immune system, and they both thought it was best to shut it down. They had to fill out some paperwork, an incident report I think, and we also found out that no, after the reaction, we wouldn’t be going home that night. We would also be transferred to a room just down the hall in the ACU for the night. E was hooked up to a monitor to check his pulse, heart rate, respiration rate, and oxygen levels. By around 7:30, his fever was pretty much gone, and he was asking to get out of bed because he wanted to run around and play.

Day 9: Saturday

Daily bloodwork: neuts actually jumped to 0.2! Saturday morning, J had a birthday party for one of his classmates to attend. Since we had not been discharged on Friday as planned, I asked my mom if she was able to take J, because he had really wanted to go, and I didn’t want to cancel last minute. On Friday, after all of the excitement (excrement?) with E’s adverse reaction to the IVIG, SickKids had sent instructions to discharge us once E was considered stable. At around 9:30am, the pediatrician had cleared him, and we were ready to go! An hour later, after about 3 trips of carrying our stuff to the car, we signed the discharge papers, and we were on our way. We were home a bit after 11:00am, and my mom & J returned from the birthday party around 12:30pm. J was quite happy to see us, and his brother home. J was acting off for most of the afternoon, and by bedtime he felt warm & had a fever. He was feverish on Sunday, as well as on Monday, so he was kept home from school. A few days later, J started breaking out in spots, and we realized that it was Fifth disease, also known as Slapcheek. My wife came down with it too, and so did E, but his fever did not return, so we didn’t need to go back to the hospital. I must have had it as a kid because I didn’t catch it, and I seem to have immunity. My mom stayed Saturday afternoon, cooked a nice stew for us for dinner, and stayed overnight until Sunday. On Sunday, my dad drove out to pick her up, but they also stayed to watch the boys for a while. This let us go out for a little break, to have lunch, and to also get caught up on some Christmas shopping since we had lost some time and had fallen behind schedule due to our hospital stay.

Epilogue

I’d like to acknowledge, and offer thanks to our families for all of their help during this hospital stay. Without their help taking care of Jonah, those 8.5 days would have been exponentially more difficult. The nurses, our oncology team, hospital staff, and doctors did a wonderful job of caring for us. Thank you to everyone on the pediatric floor of Scarborough Centenary! I’d like to acknowledge The Super Sophia Project (https://www.thesupersophiaproject.ca/) for the Love Box that E received. They put together packages, known as Love Boxes, which are given to children who have a hospital stay. They rely on donors & volunteers for items, and sorting. They are working on becoming an accredited charity, but they’re worth of a donation of time, items, or money if you’re looking to support a great cause. As an aside, Sophia was diagnosed with leukemia at age 2, completed treatment at age 4, and is now a 5 year survivor. I’d also like to express my gratitude toward Ronald McDonald House. There’s not an actual house at Scarborough Centenary, but they have a room which is staffed mostly by volunteers. In this room, you can get food, coffee or tea, snacks, or use it as a respite area if you need a bit of downtime to decompress. They have also have sleep & shower facilities. We didn’t use the sleep/nap rooms, but we did take advantage of the shower facilities. From personal experience, let me tell you how much better a simple shower can make you feel, after you’ve been confined to a hospital for days on end. If you’re looking to make some end-of-year donations, Ronald McDonald House is a great organization which is directly helping parents and families of hospitalized children. Donate at https://www.rmhctoronto.ca/How-to-Help/Donate-Now.aspx. Lastly, a big thank you to anyone, and everyone who offered support, words of encouragement, or just lent a sympathetic ear. It was a difficult, trying experience, and I’m crossing my fingers for smooth sailing until EOT.

114) Go bag

Early on after E was diagnosed, I can remember one of our doctors telling us about fevers. In cancer patients, having a fever is a big deal. It requires immediate attention from a medical professional: temperature check, blood pressure check, heart rate, blood oxygenation, and of course bloodwork. Cancer patients receive the VIP treatment and don’t have to sit around waiting in emergency rooms – they get to skip the line. I’m not sure of the procedure for adults, but for E, if we’re going to our satellite clinic, we call ahead to let them know we’re coming, and then head directly to the pediatric floor, where one of the nurses will access E through his port to get a blood sample. The sample goes to the lab, where laboratory things are done to it, and the results come back 1 – 2 hours later. If the neutrophil levels are below 0.5, we get admitted. If the levels are above 0.5, we get discharged. In addition to being accessed & having bloodwork, there’s a visit and assessment with an on-call pediatrician. A hospital visit is needed if 1) the child’s temperature is greater than or equal to 37.5°C and less than 37.8°C for an hour in duration, or 2) the child’s temperature is greater than 37.8°C in a single reading. The doctor told us that if E meets either of these conditions, we need to be prepared to drop whatever we’re doing, and get him to a hospital. The doctor agreed with my suggestion of having a prepacked “go bag”, containing a number of things you might need for an overnight, or short hospital stay.

Once I decided to change my idea of a journal into a blog, I thought it might be good to post the items we keep in our go bag, and some rationale behind their inclusion. That post has been sitting in my brain for a while, but there was usually always something more pressing, or immediate to write about. Well, it’s time. In addition to this post, I think I’ll give the go bag list its own separate page, accessible from the main page to be more easily accessible should other parents in a similar situation read it, and find it useful. Keep in mind that E was diagnosed at age 15 months, and is now 3.5 years. You’ll obviously want to switch things up a bit if your child is older or younger.

E’s Go Bag

• 2 or 3 pairs each, of shirts, pants, pyjamas, and socks: for basic day & night clothing needs
• diapers: no explanation required
• wipes: cleaning dirty bums, faces, or hands
• diaper rash cream: you & your child will appreciate this if you’re on a course of antibiotics that causes diarrhea. NOTE: you can also ask the nurses for magic bum cream which sticks better than just zinc oxide cream. If the nurses are unfamiliar with that term, it’s equal parts zinc oxide cream, Penaten cream, and petroleum jelly.
• toothbrush: oral hygiene
• toothpaste: see above

Parent’s Go Bag

• 2 or 3 pairs each, of shirts, underwear, and socks: for your basic clothing needs
• a pair of pants: a spare, in addition to the pair you’re probably wearing
• a pair of sleep pants, and a sleep shirt: don’t sleep naked at the hospital
• slippers/crocs: have a pair of comfortable indoor footwear. Hospitals can be cool, and floors can be cold so keep your feet warm & cozy.
• toothpaste: morning breath be gone!
• toothbrush: oral hygiene
• floss: see above
• toothpicks: ditto
• deodourant: who wants to stink?
• hand lotion: it can be very dry in hospitals. Especially with handwashing & hand sanitizer. You’ll appreciate it when your hands start to get chapped.
• lip balm: see above
• acetaminophen and/or ibuprofen: you’ll be glad you have it if you come down with a pounding headache.
• paperback novel: if your phone dies, or if you run out of data/have no wi-fi, keep a book on hand to stave away boredom.
• reusable water bottle: save the environment while at the hospital too! Fill up your reusable bottles from water coolers, fountains, taps, or filling stations.

Food and Snacks Go Bag

• a box of instant oatmeal: an easy breakfast. It’s easy to find a bowl, spoon, and hot water in a hospital.
• 2 or 3 boxes of granola bars, protein bars, or fibre bars: they’re prepackaged, last a long time, and are good for a snack or boost of energy.
• 2 or 3 packages of instant noodles: add hot water, and you have a quick meal.
• 2 or 3 packages of Kraft Dinner Easy Mac: see above
• 5 or 6 fruit pouches: easy snack for your child that doesn’t need refridgeration.
• Lipton Cup-A-Soup: ditto
• green tea: black tea is more commonly found in hospitals, if there’s a family pantry room, or Ronald McDonald room. If you’re a green tea drinker, bring some with you.
• instant coffee: I’ve never actually had this one in our go bag, but it might be useful for some, if your hospital doesn’t have a coffee shop, or if the coffee shop has limited hours.

Last Minute Grabs on the Way Out the Door

• apples/bananas/oranges: grab a few of these to keep on hand for a healthy snack
• vitamins/medication: if you take daily vitamins or medication, don’t leave these at home
• phone: keep in touch with your loved ones.
• phone charger: keep your phone filled with juice.