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.

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!