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!

110) Thanksgiving (beter late than never)

I started writing the following post after dinner on Thanksgiving Day. I was interrupted by J, who wasn't falling asleep with my wife, and requested that I go upstairs to snuggle with him. Since then, I've had maybe 3 or 4 nights where I haven't passed out while putting one of the boys to bed, and I haven't been able to finish up. It's late, but it's posted now.

It’s the second Monday in October, so that means Canadian Thanksgiving. Or, as we like to call it here in Canada: Thanksgiving. It’s fairly similar to the Thanksgiving celebrated in America, but our Thanksgiving is on a Monday versus the American Thursday, and we have a 3-day weekend instead of the American 4-day weekend. It’s not a big travel weekend like it is in America, nor does it have one of the biggest shopping days of the year like in America. It’s a time to reflect, and be thankful for what you have.

I’m thankful for my wife. She carried & birthed our two boys, and we’re partners in the craziness of raising a family; I couldn’t do this without her.

I’m thankful for my two boys: J, and E. They have both caused us more than our fair share of worry, and anxiety (especially you, E), and there’s been days where I feel I can’t do it anymore, but their smiles, giggles, hugs, and snuggles make up for it. They have their faults, and they sometimes drive me batty, but I love unconditionally them, and I’d do anything to help to see them succeed in life.

I’m thankful for SickKids. It is truly a world-class children's hospital, and we are so lucky to have it here in our back yard. It’s not necessarily a place you think about having to go when you bring a child into the world, but if you do eventually need it, it’s great that it is there.

I’m thankful for the dedication, hard work, and compassion by the nurses, doctors, staff, and volunteers during the care E’s received during his leukemia treatment. These people encounter so many stories of heartbreak, of tragedy, and of triumph too, and they come to work ever day and deliver professional, compassionate care to children who were dealt a bad hand in life.

I’m thankful for POGO, the Pediatric Oncology Group of Ontario, and the satellite cancer clinics they have set up in various locations around the province. As much as I think SickKids is a wonderful hospital, we have been able to get many many many incidents of bloodwork, and chemo at our satellite clinic in Scarborough, saving us time, gas, and money by not having to travel to SickKids for every appointment.

I’m thankful for Alex, Lynn & Kirsty, the Child Life Specialist, RN, and Nurse Practitioner respectively at our satellite clinic in Scarborough. These three women are a great resource for anyone in the east end of the GTA who has to take their child in to be treated for cancer. They are wonderful, caring people, and they bring a ray of sunshine into the lives of families who have to go through one of the worst things imaginable.

I’m thankful for the support of strangers, friends, and family while we walk this difficult path. Monetary donations, gift cards, meals, and toys for the kids are just a few of the ways that people have helped out. Grandparents & family who have supported us with child care services, have enabled us to get to SickKids for early appointments, go to work, and get out of the house for a small break from the kids in order to keep some semblance of our sanity.

I’m thankful for Hearth Place in Oshawa, its staff, and all of the other childhood cancer families we have met along the way. Talking to other people who just “get” it has been great for reducing stress and worry. It’s nice to see familiar, smiling faces at our monthly parent support meeting, and to get updates on how their children are progressing & to compare notes on side effects such as nausea, vomiting, or rashes. It may not happen every month, but there is usually one parent/family at the meeting whose child is finished treatment. It’s heartening to see them come back, and to continue to support the community. Seeing other families who have been through treatment, and have come out the other side is like a beacon of light and hope in a long dark tunnel. It also may not happen every month, but there are new families who will show up. I don’t ever wish for other parents to join our club, but it’s also nice to meet new families who aren’t very far in treatment. It’s cathartic to share our experiences with them, and to provide support & hope to others new to childhood cancer.

I’m thankful for all of the great organizations out there who are supporting children, and families. There are too many to name them all, but a few such organizations are: Camp Ooch, Kids Up Front, Million Dollar Smiles, The Super Sophia Project, and Make-A-Wish Canada.

I’m thankful we live in Canada, with our universal health care. We’re out of pocket on some things such as medication, transportation to & from hospitals, lunches, etc., but it’s manageable. We’re not in a situation where we have to fight with private health insurance to cover basic costs of treatment, nor do we have to worry about having to sell, or lose the house because of astronomical medical bills.

I’m thankful for anyone who has ever donated, organized an event, or raised awareness of childhood cancer, and how it needs more funding for research so there can be new, more successful, and less harmful treatment options for these kids.

I tend to be a negative thinker, so it’s good to do an exercise like this once in a while. It can change your whole world view by being appreciative of what you have, and seeing things in the light of glass half full.

109) Mega mergers

Some big news today....Make-A-Wish Canada, and the Children’s Wish Foundation of Canada announced they were merging, and will be known as Make-A-Wish Canada. Their aim is to combine their organizations to leverage their resources with the goal of fulfilling every eligible child’s wish across the country.

Back in the summer, the two main charities in Canada that advocate for childhood cancer, Coast to Coast Against cancer Foundation and Childhood cancer Canada announced their own merger. Their goal is to combine their efforts to create more positive outcomes for children, adolescents, and young adults who have been diagnosed with cancer.

Just last week, Camp Ooch, and Camp Trillium announced their own merger, “aimed at furthering their shared goal of reaching every child and family affected by childhood cancer across Ontario. They hope that a combined organization will enable them to better support families, have camps in more communities including 8 hospitals in Ontario, as well as bringing more families & kids to overnight camp.

I’m optimistic that this will do nothing but good for the childhood cancer community. If, by merging, they are able to combine their organizations to leverage their combined resources to do even more good, and help even more children and their families, then this is great news.

I was surprised by the first announcement involving Coast to Coast Against cancer merging with Childhood cancer Canada. I was floored by the announcement involving Camp Ooch, and Camp Trillium. And today, I’m blown away by Make-A-Wish Canada & Children’s Wish Foundation of Canada’s merger. In fact, if I woke up tomorrow with my head sewn to the carpet, I wouldn't be more surprised than I am now.

https://www.childhoodcancer.ca

https://coasttocoastagainstcancer.org/

https://ooch.org/

https://camptrillium.com/

https://www.childrenswish.ca/

https://makeawish.ca/

https://www.thepowerofonewish.ca/

108) Two thousand words

A quick, photo based post tonight. I tend to write more than posting pictures, but tonight I’m not feeling very write-y.

The first pic, I shamelessly stole from another parent we know from our satellite clinic, and also from Hearth Place. Her daughter is only 4 days older than E, and she was one of the first people we met that also had a toddler who was in treatment. The picture, and the caption are all hers, I take absolutely no credit for either of them, but it was too cute not to post. Our satellite clinic hosted a Pancakes & Pyjamas fundraiser last Wednesday. They were selling plates of pancakes for $5.00 to raise money for POGO, a group of pediatric oncologists who "champion childhood cancer care on behalf of the childhood cancer community".

....and one day two superheroes met....they became friends, and fought their battles together 💗

The second pic comes from J’s Terry Fox Run. He had it at school last week, and this year, he was running for a number of special little superheroes. Four children of the six named are still fighting, while the other two children have unfortunately, passed. Gone, but not forgotten. Loved, and missed dearly. We need to do better for these kids.

Terry Fox Run 2019

107) Ailments, allergies, and articulation

Nineteen days into September, and despite me wanting to write more for Childhood cancer Awareness Month, and leukemia Awareness Month, I’ve managed 3 posts. I started off strong with 3 posts in 3 days, but then life & family responsibilities bumped me out of my lane. There’s been a few night where I’ve been too exhausted to be able to gather my thoughts & organize them into some sort of written form. A good number though, have been from the boys. I’ve either been snuggling one of the boys to sleep, and I’ve inadvertently put myself to bed for the night as well, or E has had a random late afternoon nap, and he’s up with us in the family room.

We’ve already had a couple of cases of “teh sicks” creep into the house. The night of Tuesday September 17^th, both J & E had been put to bed. E started coughing, and wouldn’t you know it, it’s our old friend croup. I sanitized the cool mist humidifier, brought it into our room, and E slept with us that night. It seemed to help him after running for about half an hour. Still though, between the hacking & runny nose, they caused him 2 separate vomiting incidents in the night, and he didn’t want to sleep. Shortly after the second vomit, I heard J start a croup-y sounding cough in his room. Thankfully, he only coughed a little bit, and nothing more really came from it. My wife was really worried about E, but I wasn’t as concerned as she. I mistakenly thought the next morning was bloodwork day at our satellite clinic in Scarborough, but my brain was one week early. Still, we called, and E’s Nurse-Practitioner & RN from the clinic said to bring him in, and they would check him out. Everything ended up being okay physically and bloodwork wise. We were given a dose of dexamethasone to bring home to give to him that night if his coughing returned. An oral dose of dex is used to treat cases of croup, but dex also doubles as one of the drugs given to chemo patients on a regular basis. Parents of kids with leukemia don’t look forward to steroid week.

J has had 3 cases of mystery hives in the past 6 days. He’s quite the picky kid when it comes to food, and he has a limited range of things that he’ll eat. It’s almost made it more difficult to nail down the source. He had another case tonight, so we gave him a dose of Benadryl, and both of us snuggled him until the itching stopped, and he was able to fall asleep. We’ve been wracking our brains trying to remember what he’s had for meals & snacks since last Saturday. Really, the only thing that we can pin to all 3 incidents is apple. It’s weird, because he’s always loved apples, but has been asking for them less in the past month. It seems kind of odd for an allergy to seemingly come out of nowhere, especially with a food he has eaten many, many, many times before. But, I’m sure that stranger things have happened.

E is getting ridiculous with his words, and speaking in sentences. I’d previously written about how he was language-delayed, likely due to the chemo. It does happen in younger kids who are diagnosed with cancer, along with a whole other host of side-effects, long-term effects, and late effects that I won’t get into in this post. I wouldn’t say that he’s caught up, but he’s progressing in leaps and bounds. Previously, you’d hear 1 or 2 words, and he wasn’t very interactive. Now, he’s regularly speaking in 4, 5, and sometimes 6 word sentences. He’ll give you yes or no answers about whether he wants something, when previously it was no response & a guess by mommy or daddy. He gets ideas in his head, and has no problem conveying them to you, like asking me to come upstairs & put on a TV show he likes. Just in the past week, a few times he’s said to me: “daddy, feel yucky”. I was a little dubious about whether this was actually true, because he’s quite the parrot these days, and we sometimes ask him if he feels yucky after we give him certain chemo medications. I tested it out the other day; he said “daddy, feel yucky”. I then asked him if he could show me where he feels yucky, and he took his hands and touched his tummy. I asked him if he felt yucky in his tummy, and got a “yeah” response. So, we gave him some anti-nausea medication known as ondansetron, which I still think sounds like the name of a Tranformer.

As a caregiver, I can’t express how wonderful it is that E can finally articulate some of his needs, and how he feels. I don’t want to compare cancer in little kids vs. cancer in big kids. There’s different challenges to each, and it’s just not fair to try and say x is more difficult than y. E was diagnosed at 15 months. For 2 years, we’ve had to try and read his body language, listen to his cries, and even just guess at how we think he’s feeling because he can’t communicate it to us. That being said, E won’t even remember most of his treatment, and I haven’t had to have him ask me about his mortality, a question that would likely be raised by older children.

106) August lumbar puncture

Last night, I wrote that August had been the first calendar month where I hadn’t written a post. I was wrong. Previously, in June, I had gone an entire month without posting something. I had been writing in June, but what I had written is unfinished, and sits in my drafts. I’ll try to finish it and post it sometime. It’s not really timely anymore, but I’ll probably finish it for posterity.

On Wednesday August 28^th, we travelled to SickKids for E’s 3-month lumbar puncture. I continue to sleep rather poorly, which makes getting up in the morning extra difficult. As usual, we weren’t up as early as we had liked to be, so we were on the road later than I had wanted. Being the last week of August, and the week before Labour Day, the traffic wasn’t too busy. We left at maybe 7:45, took the 401 & the DVP, and made it to SickKids by about 8:45. We made a beeline for the parking level P4 (the lowest, and least busy parking level), and we were up to the 8^th floor a bit before 9.

We signed in at the desk, and were taken immediately to the intake room, where E had his weight & height measured, as well as his blood pressure taken. We answered the usual barrage of questions about when he last ate, if he has a fever, his last bowel movement, and if he has a cough, etc. After that we were sent to the recovery room, where E had his port accessed. He was distracted by Rusty Rivets on Treehouse, and he was really good about it this time. Lately, port accesses have involved me putting in something similar to a wrestling immobilizer hold while my wife tries to distract him, and a nurse tries to access him. Like I had said, he was really good about it, they got some blood out of his port to send to the lab, and we were then directed to visit the orange pod to see the oncology team. We were put in a room, and while we didn’t have to wait too long, we had to keep E distracted. He was quite amused by the sink that turns on with hot and cold foot pedals. There also happened to be a doctor’s reflex hammer in the room, and he got a kick out of tapping me on the knee with it. An oncologist we’d never spoken with before came in the room to do a quick exam on E, and to ask us about any questions or concerns. After that, we shuffled back to the waiting room until it was our turn for the lumbar puncture.

If you know E, you know he rarely sits still for long. It’s a children’s hospital, so the waiting room is full of toys. He played with some toys for all of about 5, maybe 10 minutes, but then the urge to run away & explore proved too much, and he was off. My wife and I take turns watching & following him around when he does this. One of us needs to stay with him, and one of us needs to stay in the waiting room to listen to see if we’re called. My wife followed him first & I stayed put, and when he eventually wandered back to the room we switched jobs. E was called for his lumbar puncture procedure around 11:20. We did our usual routine of me carrying him into the room with my wife following. Normally, he wants nothing to do with it; he squirms, kicks, and thrashes to try and get out of my arms while the anesthesiologist does his or her job of dosing him with the medication that puts him under. This time however, he was calm, and just snuggled me while the anesthesiologist connected to his port to deliver the drug. In 10 – 15 seconds he was out, and I placed him down on the gurney where the procedure takes place. My wife & I left to go outside to sit on the bench, and poof, in what seemed like no time at all, the door opened & the wheeled sleeping E out of the procedure room, flashing smiles & thumbs up to let us know that everything went okay.

While he was sleeping in the recovery room, my wife and I alternated running to the ground floor to grab ourselves some food. E usually wakes up screaming & trying to get up after 20 minutes, while we have to try and calm him and keep him laying flat for the remainder of the hour so that the vincristine that was injected into the spinal fluid can disperse evenly and do its job. This time, E ended up sleeping for about 40 minutes, and woke up in a good mood. Because he had to fast for the procedure, he was hungry and was eager for the milk and cookies we had brought for him. In 2 years of lumbar punctures, this was the first time that he had woken up in a relaxed state. It was such a relief to see him that way, and to not have him inconsolably upset.

Before we left, we filled our prescriptions for more dexamethasone (steroid), 6MP, and methotrexate. Little James, whom I had written about last night was in the hospital that day with his mom. We made contact with her, and were able to bring up a bagel so she could have a bit of food and not have to leave her son’s side. We spoke to her in the hallway for a couple of minutes before we were on our way to go home. Seeing the little guy and his mom stirred a number of emotions in me. It was difficult to see how quickly his condition had deteriorated, when just 2.5 weeks earlier he had been finishing his baseball season, and going to Camp Ooch. I’m neither embarrassed, nor too “manly” to admit that I cried during a good chunk of the drive from SickKids to our house.

We arrived home to find my mother, who had come down to help get J off to summer daycare, weeding our garden. She chopped a bunch of peppers, onions, & mushrooms, and we had a really nice dinner of fajitas. I dropped her off at the GO Train, came home, and then fell asleep with J after having read him a bedtime story. The end to a long, tiring, emotional day.

105) Strangers into friends

I sit down this evening to write with a heavy heart.

Today is Labour Day in Canada, and it unofficially marks the end of summer. Most parents are trying to get back into routines, and are preparing for their children to go back to school tomorrow. A family we know from our clinic and parental support group had their son succumb to relapsed neuroblastoma this morning, and instead of back to school, they’re preparing for their child to be buried.

Today has been rough. I’ve been crying off and on all day today. I’m having problems coming to terms with the unfairness of the situation. A family has lost their little boy to this awful fucking shitface asshole of a disease named cancer. He did nothing to deserve this, and now all of his budding lifetime potential is gone. He was only 5 for fuck’s sake. Now is the part where I attempt to explain how I’m not trying to be selfish by writing about my grief over another parent’s loss.

One of the things I see crop up in some of the online leukemia support groups reads: “Childhood cancer makes friends into strangers, and strangers into friends”. Through our journey, I identify more with the latter than with the former. Some people have friends or family turn toxic after a childhood cancer diagnosis, while others are ghosted by their so-called-friends. Like I said, I wouldn’t say that has been our experience, but everyone’s experiences are different. I do identify with the “strangers into friends” part of the statement.

Until you get to know me, I’m a shy, introverted person. Around people I don’t know, I’m usually quiet, reserved, and hesitant to strike up conversation. With other parents of a child with cancer, whether we meet them at clinic, or through our parental support group, I find myself just openly, and easily chatting with them. I perceive a kinship, an understanding. When I meet another parent of a child with cancer, it’s like two dogs meeting in a park. There’s a recognition there. You know that you’re both in that same awful club, and many of your experiences, worries, hopes, and fears line up – you don’t have to explain, they just get it. I consider these people friends, even though we may not know them well, or even much at all outside of our connection with childhood cancer. I’ve written about a similar topic before, but I would be there to help out ANY of these people if they were stuck, or in some sort of situation. I root for their kids; I rise when they’re doing well, and I stumble when they have a setback. Any of them would be welcome in my home to share a meal, or a cup of coffee.

Having said all that, I don’t think I’m projecting my “what if this happens to E?” feelings onto this situation. I don’t think I’m experiencing collective grief either. We know this family – we don’t know them really well – but I’m genuinely upset that this has happened, and there’s nothing that medical science could have done to save him. Neuroblastoma is a cancer that occurs in types of nerve tissue. It is unfortunately, a more aggressive cancer when found in children older that 1.5 years. It’s also one of the types where intensive treatment does not always result in a favourable prognosis, especially in the high-risk group.

This is where the underfunding of childhood cancer research really fails our children. What if there was more funding, and more scientists and doctors were studying it? Maybe we’d be closer to a cure, or at the very least, have higher treatment success rates.

Rest in peace little James, I will always remember your courage, your smile, and your positive outlook on life. You deserved better. All children with childhood cancer deserve better. It’s up to us to try to get politicians and organizations to properly fund childhood cancer research, because right now, we’re failing these children.