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.