84) End of year donations (2018)

No hospital stays over Christmas this year, but there's sickness everywhere in our house. J has been ill with a fever/cough/ear infection since the 21st. My wife picked up the same thing on the 26th. E has had a cold & runny nose that he hasn't been able to shake for about 5 weeks now. So far I've been lucky enough to avoid it all. For these reasons, I'm a little late posting about end of year donations, but there's still time. Feel the satisfaction of making a difference, while also getting a valuable year 2018 tax receipt.

Until 11:59 pm on December 31st, donations to SickKids, Ronald McDonald House, and the Leukemia & Lymphoma Society of Canada are being matched, so your donation is effectively doubled.

If you're planning on making any donations before the calendar rolls over, and you want to help kids, or kids with cancer, please consider donating to one of the following wonderful organizations:

Camps For Kids With Cancer

• Camp Ooch - https://www.ooch.org/camp/ways-to-give/ways-to-give
• Camp Trillium - https://donate.camptrillium.com/main/info

 Cancer Research/Advocacy Organizations

• Pediatric Oncology Group of Ontario (POGO) - http://pogon.convio.net/donate
• The Leukemia & Lymphoma Society Of Canada - https://llsc.donorportal.ca/Donation/Donation.aspx?F=801&T=GENER&L=en-CA&G=85&NFP=1&_ga=1.46601191.1718130023.1448403989
• Canadian Cancer Society - http://www.cancer.ca/en/donate/

Hospitals

• SickKids Foundation - https://secure.sickkidsfoundation.com/donate
• Scarborough Health Network Foundation - https://cause2give.unxvision.com/EDMWeb/DonationForm.aspx?FormID=408
• Children's Miracle Network - https://childrensmiraclenetwork.ca/donate

Wish Foundations

• Children's Wish Foundation - http://www.childrenswish.ca/donate/
• Make A Wish Canada - http://www.childrenswish.ca/donate/ 

Cancer Support Organizations

• Hearth Place - http://hearthplace.org/donate/
• Childhood Cancer Canada - https://www.childhoodcancer.ca/donate 
• Ontario Parents Advocating for Children with Cancer (OPACC) - https://www.canadahelps.org/en/charities/opacc-ontario-parents-advocating-for-children-with-cancer/
• Ronald McDonald House Canada - https://www.rmhccanada.ca/donation
• Ronald McDonald House Toronto - https://2060.thankyou4caring.org/donate

83) November rollup

I haven’t written anything in a while; it’s been a bit longer than 3 weeks, and I’m feeling badly for neglecting my blog. When you’re writing somewhat consistently, and by that I mean 1-2 posts every week-ish, it’s easy to stay in that routine. Once you stop, you end up in a rut, and it’s difficult to pick things up again. It hasn’t been a conscious decision to neglect this space though. I did have about a 7 day stretch where every night, I was falling asleep when I tried to put E to bed, so those were obviously non-writing nights. Lots of other little things: Christmas preparation, long commutes, etc. Just life getting in the way. There’s been a few events happening that I’ve wanted to write about, so (hopefully) without getting too long winded, here’s the November rollup, which summarizes the month.

On Sunday November 4th, my wife, my brother-in-law, my sister-in-law, E’s Godparents, and I took part in The Inside Ride to benefit Hearth Place. Our team came in 3^rd place for the amount of money raised with just over $1900 (the total has since grown to $2050). The grand total raised for Hearth Place at the event was over $17,600! It was a great experience, and much more of a challenge than what I had expected to pedal a stationary bike for 5 minutes. Or I’m just out of shape. Maybe a little bit of column A, a little bit of column B.

Early November also meant parent-teacher night at J’s school. J has been having some problems in JK, namely he doesn’t always act appropriately around his classmates, and has been doing a bit of hitting, biting, and teasing to name a few. We were let off the hook for parent-teacher night, but we were called in on November 12^th for a meeting with J’s teacher, his ECE, the principal, and a couple of other people who I can’t remember their job titles at this moment. The way I’m describing it probably sounds worse than it actually was. It was a meeting for everyone to get on the same page about J, and the next steps we can take to enable his success this year. I was quite nervous before the meeting, but it was a pleasant experience, and I felt okay coming out of it. Still though, it’s upsetting to know your child is acting out in school, and worrying when you drop him off, and don’t know what kind of day he is going to have.

In a previous post, I had mentioned that E, my wife, and I had gotten our flu shots on November 14^th. At the time, it was somewhat obvious that J was coming down with some sort of sickness, so we waited a bit to take him for his shot. Unbeknownst to us, pharmacies only give flu shots to Ontarians aged 5 and older, so we were out of luck, and had to book an appointment to go see our family doctor to get it done.

On Saturday November 17^th, we had a busy day. We met up with one of my wife’s friends from university in Toronto, and brought the boys with us. J was excited because we rode the GO train. We took both the boys out to a restaurant, which we’ve never done before, and it wasn’t a complete and total mistake. We rushed home to make it to one of the local Santa Claus parades that evening. We arrived a bit late, and missed the beginning, but the boys got to enjoy some floats, and wave as Santa went past. Checking social media for the first time that evening, I found a message from one of my cousins. I had to read it over 3 times in order for my brain to process the words. She had told me that her youngest son had been diagnosed with Wilms tumor the day before. Wilms tumor is a type of kidney cancer, and is one of the most common cancers in children. They would be leaving for London, Ontario on the Monday for their initial consult with the oncologist, and she was asking for advice. As best as I could, I did a brain-dump of anything that might be relevant, including where to stay (Ronald McDonald House), who to talk to for support, and whether they should bring their older son or leave him in the care of family. I started writing this blog in the hopes that some of my ramblings might help other parents whose children are cancer patients, so I’m glad to have provided a bit of guidance, and I’m happy that she reached out to me. I’ve been thinking about them quite a bit; I’m shaking my head, and I’m quite upset about this turn of events. I’m terribly sorry that they had to join this awful club of having a child with cancer. I want nothing but good health, and best wishes for them during their son’s treatment. If you’re reading this, I’m thinking about your family every day, and may strength be with you.

The next morning, we brought both of the boys to the Oshawa Centre for a session at Build-A-Bear, as well as a story & picture with Santa. I’m not going to write too much more about this one, because it’s already up in this post: 82) Stories, and pictures, and bears - oh my!

Also in November, J brought home croup from school. Croup doesn’t really affect J the way it did when he was smaller. Back then, it meant middle-of-the-night stridor, and usually a trip to the emergency room. J was nice enough to share his germs with his brother, and on the evening of November 20^th, around 11pm, E started having stridor. He was flopping around, uncomfortable, and seemed alarmed that he was having some trouble breathing. We tried a couple of things at home first – cool mist humidifier, wrapping him in a blanket and taking him outside in the cold air - but it didn’t help. I paged the on-call oncologist, and afterward spoke with the nurses of 7-West at Scarborough Centenary to say that I was going to bring him in to be checked out. He was seen fairly quickly by the doctor, and he was given a dose of dex(amethasone) with a follow-up dose to be given 12 hours later. The croup cleared up, but came back somewhat on the morning of November 28^th. It just so happened that November 28^th was E’s day to start steroid week, so his regularly scheduled doses of chemo steroids cleared up the croup. Steroid week was a difficult time this month. E was quite grumpy, hungry, and his sleep was poor, and disturbed. The poor little guy has been battling a cold off and on ever since, and has a runny nose that just won’t seem to stop. The steroid effects have worn off now, but he’s still having sleeping troubles. It’s difficult to get him to fall asleep, it’s difficult to keep him asleep, and he often wakes up at 5:30am, and wants to get up and start his day.

On November 29^th we picked up J from school a little bit early, and drove to our satellite clinic at Scarborough Centenary for the annual POGO Christmas party. We had been invited last year, but we were unable to make it due to a conflict that could not be rescheduled, so this was our first year attending. It was a great time, especially for all of the kids! They had a number of games and activities set up around the room, there was pizza, and juice boxes, as well as cookies, and treats. Mr. & Mrs. Claus also made a grand appearance. We saw a number of people we know from clinic, or our parental support group, but it was impossible to say much of anything to them because we spent most of our time chasing the 4 year old, and the 2 year old around. The don’t really stand still. The room was full of kids being treated for cancer, their siblings, and even some alumni who have rung the bell, and successfully completed their treatment. It was simply wonderful to see the smiles on all of their faces. At the end of the party, all of the kids were given a gift when it was time to leave. Thank you to POGO, its volunteers, donors, Scarborough Centenary staff, and anyone involved in the planning and organization of this party. It really was a great event that was put together for these courageous kids!

Looking back, I’ve now written waaaaay more than I had intended, so I'm going to end things here.

82) Stories, and pictures, and bears - oh my!

Recently our family was able to participate in a special event organized by our regional cancer support centre, Hearth Place.

The event put together for children who have cancer, and their siblings. For children, having cancer can mean missing out on many typical childhood activities. Participation in sports, crowded places, public transit, and indoor shopping centres can often be a no-no. The recycled air, the crowds of people, and the presence of germs can potentially do a number on these kids, who are immunosuppressed as part of their treatment.

In order to minimize germ exposure, but still give these kids an opportunity to be kids, Hearth Place worked together with the Oshawa Centre to organize a special visit before the mall opened to the public. The kids were invited in early to make a bear at the Build-A-Bear Workshop, followed by a story, and a picture with Santa from MyHolidayMoments.

I would like to express my gratitude to Hearth Place, the Oshawa Centre for organizing this event. I'd also like to say thank you to  Build-A-Bear, MyHolidayMoments, and Santa Claus himself for participating! Both of my boys had smiles on their faces, except for when it was E's turn to have a picture with Santa. He was a little afraid, and didn't want to get near him. I think the biggest smile was on my face, just watching them participate. Santa assured me that both boys were on the nice list, so he mustn't have been checking in when J broke a lamp just 2 days prior.

E's bear, lovingly brought to life with assistance from J.

J watching the stuffing machine.

E listening to Santa read a story from a safe distance.

81) Odd traditions

Traditions can often be strange. For instance Christmas wouldn't be Christmas if we didn't bring a small evergreen tree (or reasonable facsimile) inside our homes, and treejazzle it with lights, ornaments, and baubles.

According to Wikipedia, Christmas trees could possibly be traced back to Roman times, when houses were decorated with evergreen wreaths for the feast of Saturnalia. Alternately, they may be traced back to the Vikings & Saxons, who worshiped trees. They would decorate barns & houses with evergreens at the New Year in order to scare away the devil. Yet another theory traces their origin to medieval plays held on December 24th, where a tree was decorated with apples to symbolize the tree with the forbidden fruit in the Garden of Eden. It's generally agreed that modern Christmas trees began in Latvia, Estonia, and Northern Germany during the Renaissance, when Lutherans would bring decorated trees into their homes. From there, is caught on, and eventually spread to other sects of Christianity. Regardless of where, why, and how it started, it is a little odd, especially when you think about it. You bring something that normally grows out of doors inside your house, and cover it in bling.

We recently put up our (artificial) tree when E was taking a nap. When he woke up, we brought him into the room, when he pointed, and exclaimed "tree!" He initially was quite interested in it, and pulled off a few ornaments. Lately, he's been better about leaving it alone. Yes, E, it's a tree. I'm not entirely sure why we do it, but it's been a tradition passed down through numerous generations, and now it's going to be a tradition of yours. Hopefully, it will be something you can pass down to your own kids, should you be able to, or choose to have them.

E, probably trying to figure out why there is a tree INSIDE the house.

80) Batkid

This post doesn't directly relate to E, but I thought I would share a good news story:

https://www.buzzfeednews.com/article/mbvd/batkid-cancer-free-remission

I'm sure a number of people will remember Miles Scott, a 5 year old boy being treated for leukemia. He's from San Francisco, and he used his Make-A-Wish wish to be Batkid for a day. Yesterday marked 5 years that Miles has been in remission, which means he is now considered cancer-free! A big congratulations to him and his family!

I remember watching the story with tears in my eyes, especially when it was reported that about fifteen-thousand people came out, and lined the streets to show their support, when organizers had only expected a few hundred! In 2013, Neither of my two boys had been born yet, but my wife was pregnant with our first. I specifically remember remember thinking about that little boy, and his family. I expanded that thought to all families who have kids with cancer, and just how unfair & difficult it must be. At that time, I had no idea that I would be going through the same thing with my youngest (not-born-until 2016) son in less than four years.

79) I am a flu fighter

It's a little bit later than normal this year, but today I went out, and got my flu shot.

Flu shot injection site.

Please go out and get your flu shot. Flu season is starting to gear up, and the flu shot is really your best defence against getting sick. Yes, the flu shot may not be 100% effective, but if you get your shot and catch the flu, the length and severity of your symptoms can be reduced. You are also not just protecting yourself, you are helping to protect the young, the elderly, pregnant women, the sick, and people who may be immunosuppressed, such as cancer patients. The more people who get their flu shots, the more difficult it is for the virus to spread due to herd immunity.

So please, go and get your flu shot. It really doesn't take much, and here in Ontario the flu shot is free - you just need your health card. It's available at your doctor's office and most pharmacies. Be a flu fighter, and you might just save someone's life.


Find a flu clinic near you:

http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/flu-grippe/clinic-clinique-eng.php


Flu facts:

https://www.ontario.ca/page/flu-facts

https://www.canada.ca/en/public-health/services/diseases/flu-influenza.html

https://www.forjudeforeveryone.com

78) Anniversaries & All Hallows' Eve

Happy belated 8th anniversary to my wife. The traditional 8th anniversary gift is bronze/pottery, while the modern 8th anniversary gift is lace/linen. Realistically, the 8th anniversary gift is "let's discuss our 4 year-old's classroom behaviours that warranted a call home from his teacher today".

Halloween fell on a Wednesday this year, and it was also the day we took E to our satellite clinic for bloodwork & chemo. He received a push of vincristine at the hospital, and later received his 5 dissolved-in-water methotrexate pills when we had returned home. Chemo on Halloween is definitely a trick, not a treat. We took him to the hospital dressed in his monkey costume, and everyone there loved it. We took him out trick-or-treating that night, but we only went to 4 or 5 houses with him. He's difficult because he wants to run everywhere. He doesn't yet understand what he's supposed to be doing, and he was rolling on the ground, which was soaked from the day's rain.

Still on Halloween, but mid-afternoon, we received a phone call with his blood results. His counts weren't so high anymore, and the neutrophils & white blood cells were closer to, and within normal ranges. The high counts have been dogging us for a few months now, and we've been a bit worried about it. We brought it up during October's parent support group meeting at Hearth Place. A few of the other parents told us that their kids had also had high counts during maintenance, and that it wasn't something to be overly concerned about. It's a reassuring to hear other parents' opinions & experiences, but it's also a relief to see the counts closer to where they should be.

Foggy, rainy Toronto on Halloween 2018. Looking northwest from the 7th floor at Scarborough Centenary.

E the monkey playing in the POGO room on Halloween while waiting for his chemo.

77) The One Where I Amost Ran Over A Man Who Was Being Chased By The Toronto Police

Yes, the title of this post is a nod to the sitcom Friends.

We were driving southbound on Nielson Road on our way to our satellite clinic for E's bloodwork. A flash of movement from the left hand side of my vision made me quickly step on the brakes. There's a plaza on the northeast corner of Nielson/Ellesmere that contains a few fast food outlets, a supermarket, and a dollar store. A man dashed out of the parking lot and ran onto Neilson Road into traffic. He's lucky that I saw him out of the corner of my eye, otherwise I probably would have hit him with the car. Right behind him, in pursuit, was an officer from the Toronto Police. Traffic came to a stop, the sketchy man ran to the other side of the road, then doubled back, running in between cars behind us. My initial thoughts were about whether I could help. Should I move the car to try and block this man? Should I get out, and try to help the officer? Once he was behind us, I quickly came to my senses. I didn't know what was going on. This man could be dangerous - he could have a knife, or a gun. Best to get out of there. The light Nielson/Ellesmere light was still green for me, so I went through the intersection, and turned into the hospital parking lot.

With the excitement for the morning over, it was time to get down to business, and get E's appointment underway. The appointment itself wasn't overly exciting. It was just bloodwork; no chemo that day, so his port didn't even need to be accessed. A quick checkup from our wonderful nurse-practitioner, and then a finger poke to get some blood by our equally wonderful RN.

Later in the day, we received a call from the satellite clinic to report that E's counts were up yet again. Particularly his white blood cells, and neutrophils. He was in the middle of fighting a cold, so that would partly explain the higher levels, but our nurse-practitioner said that SickKids would be calling with instructions about bumping up his dose of chemo again. A little bit later, the phone rang, and it was our contact-nurse from SickKids. She said that E's oncologist had looked at his results, and his weekly dose of methotrexate would be bumped up from 4 pills to 5 pills.

So that's it, that's where we are right now. Just trying to work out the right dose of chemo to keep E's levels from going too high, while also not overdosing him to the point of him being neutropenic.

76) Two word sentence

AboutKidsHealth.ca has an article about the neurocognitive effects of leukemia treatment on a child. Neurocognition includes "language, memory, concentration, and ability to grasp new concepts". For the past week or two, I've been worrying that E may have a neurocognitive delay, specifically in language.

E is a smart little guy. We can show him flash cards of numbers from 0 to 10, and he will correctly verbally identify all of them. He knows colours, knows some shapes, and he has a lot of words, but he hasn't been putting them together in short 2 or 3 word sentences. E has a cousin who is 3 months older than him. I know it's not reasonable to directly compare them because at that age, 3 months is significant in terms of development. I'm not sure that E is at the language level his cousin was at, when his cousin was 2-and-a-half, but he has been recently starting to tell us when he's hungry instead of us guessing.

Fast forward to earlier this evening when I was giving E his bath. He had every bottle of soap, shampoo, conditioner, and bubblebath in the tub with him. He was lifting them up, one-by-one, onto the side of the tub, and we were counting them together. Eventually the water started to get cool, so I had to fish him out of the tub against his will. He was thrashing & yelling, trying to get away from me, but I was talking to him, telling him that the water was cold, and we were going to go and get dry. Out of nowhere, he yells "NO DRY!". I repeated my phrasing to him several more times, and each time, he responded to me with a clear "NO DRY!".

He actually made a two word sentence! I know it was what he was thinking because his thrashing and squirming told me that he was not ready to leave his bath. Hopefully it's the start of a breakthrough, and the little sentences start to increase exponentially. Still, it should be something we bring up with his oncology team in case he needs a little bit of help to get where he needs to be.

75) Half-life

Today, E is 2-and-a-half. 30 months. Having been diagnosed at exactly 15 months of age, today is kind of like a cancer solstice for him. He's now spent equal parts of his life as a little boy, and as a little boy with leukemia. If I want to split hairs about it, he's actually had cancer for more than half his little life because he had it for an undetermined length of time before it was diagnosed.

But for all intents and purposes, nothing really changed in his, or our lives until July 22nd 2017 when we received that horrible news. Tomorrow will be 50% plus a day, officially more than half of his life. This is a fact he doesn't know, or understand, but I do. E's doctors say that he won't remember the earliest, worst parts. He will remember later hospital visits for bloodwork & a bit of chemo, because he will be 4-and-a-half when he reaches end of treatment. I know that for me, this is something I will never forget. I've cried, I've yelled, I've been a wretched miserable cow. I've lost sleep, I've been in states where all I want to do is sleep, and I've questioned the purpose & meaning of EVERYTHING. Today is not a milestone to be celebrated, but it feels significant, at least to me, and I believe that it deserves to be noted.

74) Apples & oranges

You shouldn’t compare apples & oranges. It’s not fair to the apples, nor is it fair to the oranges.

People are unique individuals, and everyone has their own personality, as well as likes & dislikes. Despite knowing this as an absolute fact, I still marvel at my two boys, and just how different they are from each-other. When we’re at the park, J, who is 4, will want to climb a ladder on the playstructure, but he always asks for my help. E, who is only 2, requires hawk eyes on him all the time. He’ll see his brother climb the ladder, and then he wants to do it. But no, E doesn’t want your help. No, E wants to climb the big ladder all by himself, regardless of whether he has the balance & co-ordination to do it on his own. I know they are each their own person with their own genetics, and their own personality, yet it still surprises me to see their differences, and the way they’ll approach something.

I cried today for the first time in a while.

Mom, if you’re reading this, there’s nothing wrong with E, or J, or my wife, so don’t worry. I wouldn’t say that any external influences are currently weighing on me. It’s more internal struggles, and swirling thoughts. Comparing apples & oranges if you will.

I feel like I’m a mess these days. I feel half-functional, and that I’m just barely scraping by. I’m pessimistic by nature, but I feel as though I’ve been taking that to new highs (lows?) lately. One of the lines in my Twitter bio reads “searching for the dark cloud to every silver lining”. I wrote that half-jokingly, and I wrote it long before E was diagnosed with leukemia.

Then I start to think about our situation, and while it’s definitely not ideal, it could actually be much worse. E has B-type ALL, the most common, and treatable form of childhood leukemia. He has an excellent prognosis. From this, my thoughts turn to darker places. There are other parents whose children may not have as good of a prognosis as our little E. There are other parents who probably wish that all their child had was B-type ALL.

Thus begins the self-loathing. How can I feel so down, and dysfunctional when I should be feeling lucky to be in this situation? It could be so much worse, and here I am feeling like a dumpster fire of a human being.

Apples & oranges. Everything I’m feeling is based on grief. All of the things I feel like I’ve lost because of my son’s cancer diagnosis. I’ve seen a lot of articles about grief lately. I haven’t searched them out, they’ve just come to me from various sources or feeds. Grieving doesn’t necessarily require death. No, you can grieve over plenty of things in life: a failed relationship, a missed opportunity, a stalled career, a sick child, and more.

I’m grieving the life that I feel we could have had, if cancer hadn’t reared its ugly head. I’m grieving, and my feelings are valid. Just as valid as the grief of a parent of a child who doesn’t have that excellent prognosis. Different yes, but still valid. Apples & oranges. I’m not being fair to myself to compare the two.

That’s may be true, but why do I still feel like a bag of shit?

73) It's been a hard day's night (and day)

Wednesday October 3rd, 2018. We had not even woken up to begin the process of traveling to SickKids, and it was already a difficult day. The previous evening, I had fallen asleep with J after having read him his bedtime stories. My wife woke me up, so I got up for some water & to brush my teeth. Then I had problems falling back asleep, and was awake until almost midnight. An alarm went off at 2:15, and I crawled out of bed to get milk for E, because his procedure needed him to start fasting at 3am. Drinking his milk, E woke up and wouldn't go back to sleep. Naturally, he ended up in our bed. Shortly thereafter, J woke up and was calling out for me. I went to his room to lie down with him, but he said he wanted his mom. Instead of waking my wife, I carried him over to our room.

So there we were, 2 adults, and 2 kids sleeping in a queen size bed. At 5am, I was awoken by the sounds of a vomiting 4 year old. J had been picked up early from school the previous day, because he was feeling unwell. It looked like whatever bug he picked up was legit. He wouldn't be going to school that day. Luckily, my mother-in-law had spent the night to help us get J off to kindergarten so we could leave early. She would have to stay to take care of him.

We were out the door around 6:30am, and arrived at SickKids around 7:30am. It was a fairly uneventful trip. We went through the usual motions of registering, medical questions, height & weight, accessing E's port, bloodwork, and visiting the oncology team. Then, we just had to sit and wait to be called into Cujo's Room for the lumbar puncture. We were told that E would be going second that day.

Playing, and looking out the 8th floor window at SickKids while waiting to be called for his lumbar puncture

The procedure for the child called first seemed to take longer than normal, and I could feel my anxiety starting to crank up while we tried to keep E still, and entertained until it was his turn. Then E's procedure seemed to be taking longer than normal. We watched while a hospital staff member walked down the hall, entered Cujo's Room, stayed a few minutes, then left. Before he walked away, he looked at us and said "don't worry, your son is fine". We looked at each-other, and wondered what that was about.

After what felt like hours, the door opened, and E was wheeled out of Cujo's Room on his recovery bed. The recovery beds are full-sized adult beds, and I always marvel at how tiny he looks when he comes out of his procedure. The nurses told us that the oncologist fellow doing the procedure had problems accessing the spinal fluid with the needle, and that they had to stop and call a more senior staff member after 3 failed punctures. There was a total of 5 punctures in his back, and that he might be a little extra sore because of it. While a bit upset, I wasn't angry about this. Junior team members deserve the opportunity to learn and practice procedure, otherwise they will never advance. It wasn't done on purpose, or with malice - I don't think any oncologist in history has woken up in the morning thinking "let's seen how many unnecessary lumbar puncture pokes I can dole out today...". Younger/junior staff are the future, and they need opportunities to both succeed, and fail so that they can learn, and grow as professionals.

In the recovery room, the nurses measured E's vitals, and the anesthesiologist seemed happy with what they were saying, so that's my cue to relax. My wife sat with E, and I ran downstairs to grab a bite of lunch. I brought my food back upstairs while E slept so that my wife could run down and grab some food for herself. I briefly set my food down to snap a pic of unconscious E. I had literally just sent the pic to our family group chat to let them know the procedure had gone well, when E woke up, and woke up screaming. Having added the text "sleeping peacefully after his lumbar puncture", I think I put the whammy on myself.

He was NOT happy when he woke up. He usually wakes up a bit early, but NEVER after 15 minutes. Usually, he might wake up after 45 or 50 minutes, but never this early. E has to lie flat for an hour afterward, so that 1) he doesn't get a massive headache, and 2) the methotrexate is dispersed evenly throughout his spinal fluid, and the fluid surrounding his brain.  He was still heavily under the effects of the general anesthesia, and he was not happy about it. Screaming, and crying; he was inconsolable, and nothing we tried calmed him down. He didn't want milk, he didn't want to eat. He didn't want to watch any of his favourites on YouTube. Everything we tried to give to him was swatted away by his angry little hands. Individually, we took turns lying down with him on the recovery bed, but to no avail. Finally, the solution was to sit in a chair, and hold him down while trying to soothe him. Unwillingly, E lay flat our laps until the hour was complete, and he was able to sit up again. It was exhausting both mentally, and physically. Also, as the hour ticked slowly to a close, the effects of the anesthesia started to wear off, and we could see our little E again. He became less angry, he wanted to watch YouTube, he accepted his milk, and he wanted his cookie.

He was given the same anesthetic that he received during the previous lumbar puncture. The only thing different this time was that he was also given gas. The anesthesiologist was puzzled, because the gas usually makes them sleep longer. He suggested we state "no gas" at our next procedure.

Returning home, we found that J was feeling a bit better, and that my mother-in-law had very graciously made soup. We had a healthy ready-to-eat dinner solution, and I wouldn't have to cook that night.

It had been a hard night, and day with sleeping problems, being up in the night to give milk, a vomiting 4 year old, and the upset over E waking early from his anesthesia. But, the day wasn't done with me yet. My mother called the house around 6pm with some news. My great aunt, who's had a health decline in the past couple of weeks was in the hospital. The doctors had determined that she had cancer, and that it had spread literally everywhere in her body. I'm having a lot of difficulties processing this right now, especially given that E is in treatment for leukemia. Two days later, on Friday October 5th, I received another call that she had passed away. Love you, miss you, and rest in peace, Auntie J.

72) Flu fighters

I've never been an anti-vaxxer. Vaccines save lives. Full stop. I will admit that in the past, I haven't always gotten the flu shot. I'd tell myself things such as: "I'm young", "I'm healthy", "I practice good handwashing & hygiene", "I don't need it". Well, I've reformed my ways, and for at least the past 5 years, I've rolled up my sleeve to get vaccinated come October. I've been thinking about writing about this subject for some time, but wanted to wait until it was closer to the time when flu shots are available. I've also doubled, and tripled down on the importance of getting the flu shot, particularly after E's leukemia diagnosis, and also after reading about an Ontario woman's heartbreaking flu story.

While you, and I may be young, healthy, and in the lower risk group when it comes to influenza, not everyone is. Babies, children under 5, adults over 65, pregnant women, people with underlying health conditions such as heart disease, or diabetes, and immunosuppressed people such as cancer patients are all most at risk of complications from the flu. You're not necessarily getting the flu shot to protect yourself, you're getting it to protect the most vulnerable segment of our society. Think of getting the flu shot as the ultimate form of altruism. We're basically using the principles of herd immunity to protect the most at-risk segment of the population from infection.

Admittedly, the flu shot is not 100% effective, but research shows that even partial immunity can reduce the length & severity of symptoms should you contract the flu. The flu shot contains inactive strains of the flu that researchers believe will be circulating in a particular year. Because these viruses are effectively dead, you will never get the flu from the flu shot. It does take about 2 weeks for your immunity to build after having received your vaccinations, and in those 2 weeks you are still vulnerable, so ensure to get your flu shot early!

If you do get the flu, drink lots of fluids & get plenty of rest. Avoid caffeine, alcohol, and tobacco products. Gargle with salt water, and use a saline spray on stuffy noses. Most importantly, if you have the flu, STAY HOME. Being the hero that continues to soldier on to work will only accomplish one thing: passing on the infection. Given that you are contagious before you show any symptoms, anyone you've infected will continue to pass along the flu. Then those people will pass it on to someone else, who passes it on to someone else, etc. until someone from an at-risk segment of the population is infected, and ends up in the hospital or worse.

Part of the reason I'm writing this is selfishness. With E being a leukemia patient, he falls into the high risk category for potential complications from the flu. Another part of the reason I'm writing this is selflessness. The older I get, the more I feel that it is our duty to society. We owe it to ourselves, as well as our fellow citizens to vaccinate against the flu in order to best protect everyone. In Ontario, it's still a bit early, and flu shots are not yet available, but it's not too early to start the conversation. This fall, one by one, we can all be flu fighters if we get vaccinated, and get vaccinated early. The life you may be saving could be my son's.


Find a flu clinic near you:

http://www.healthycanadians.gc.ca/diseases-conditions-maladies-affections/disease-maladie/flu-grippe/clinic-clinique-eng.php


Flu facts:

https://www.ontario.ca/page/flu-facts

https://www.canada.ca/en/public-health/services/diseases/flu-influenza.html

https://www.forjudeforeveryone.com

71) Fire!

Today is bloodwork day. Or it was supposed to be. We were minutes away from leaving the house to drive to the satellite clinic when the phone rang. My wife answered, and it was E's nurse practitioner who told us not to come today. There was a fire in the hospital on the 3rd floor, and management was advising the public to avoid all non-urgent visits. So, we've been rescheduled.

70) Medication adjustment

The very first oncologist we met after E's diagnosis explained leukemia, and the course of treatment. I mostly remember his words, and they went something like this:

"With a leukemia diagnosis, something has gone wrong with the bone marrow. Instead of making regular cells, the process has become defective, and the result is an overabundance of blasts. The course of chemotherapy reboots the system, and keeps it artificially low for a couple of years in order to fix the defect so that the bone marrow starts producing cells normally again."

Over the course of treatment, the patient will receive copious amounts of blood tests. It's important to monitor the state of different types of cells in the blood, because you want to ensure that levels for things such as white blood cells, neutrophils, platelets, etc. are in the Goldilocks zone - not too high, and not too low. Counts that are too low increase the chances of bleeding or bruising, and increase the risk of infection. Counts that are too high increase the chances of relapse.

E is currently in the maintenance phase, and he has bloodwork done every 2 weeks. The last 3 times, his neutrophil counts have been slightly higher than normal. SickKids makes a medication adjustment when they observe 3 consecutive higher results, and now that's what happened to us. When last week's results came back, and the neutrophils were again up, we received a message from our satellite clinic to increase his 6MP. He used to get half a tablet 4 nights a week, and a full tablet 3 nights a week. He now receives half a tablet only 3 nights a week, and a full tablet 4 nights a week.

Am I worried about this development? I don't think so, not overly. I don't believe either SickKids, or his nurse practitioner are worried about the climbing counts. He's 2. He's growing. Eventually, medications are going to have to be increased to account for the change in his body mass.

I'm not doing cartwheels that we have to increase the dose of a medication that is toxic to the point where we have to handle it wearing a mask & gloves, but I'm relieved that the likely cause of the increase is a growth thing, and not a leukemia thing.

69) The tacklebox

We have a tacklebox:

It's not for fishing, but it is important. Anywhere we take E, the tacklebox goes with us too. As you can see, it's packed with pretty much all of his medications, and a number of other things:

It has EMLA patches to apply to his port. They numb the skin so that it's less painful when he's accessed with the needle. It has a couple of chemo drugs: 6-MP (mercaptopurine), and methotrexate. It has an anti-nausea medication called ondansetron which is given in conjunction with his doses of methotrexate. It has a pill cutter, and tweezers because E gets half a pill of 6-MP some nights, and a full pill on others. It has cotrimoxazole (Septra), an antibiotic given as a preventative measure against a form of pneumonia to which cancer patients are susceptible. There's a pill crusher to grind the aforementioned Septra pills into dust so we can mix it into puréed fruit or applesauce. There's acetaminophen (Tylenol) in case E is in any pain, such as the jaw pain side-effect he usually experiences from the bi-weekly doses of vincristine. It has to be acetaminophen, since cancer patients need to avoid ibuprofen. There's a couple of thermometers to test for fever in case he feels warm, a few clean, empty syringes for administering doses of medications, and drug information printouts that contain important information about dosages, instructions, and possible side-effects.

The tacklebox & lock were given to us by SickKids because of J. SickKids wants to minimize the chances of a sibling getting in to, and accidentally doing damage to themselves by ingesting these toxic drugs. It's always kept locked, until we need it.

68) Regularly scheduled bloodwork

We took E to the satellite hospital the other day for an appointment to do some regularly scheduled bloodwork.

We saw a mom & little girl who we know that were admitted for fever. :( They're in a difficult stage of treatment, so I hope her counts come up, her cultures come back negative, and that her fever breaks without having to spend too many days in hospital.

We helped E to paint a rock that will be going in a special rock garden at the hospital. All of the rocks in this garden will have been painted by children who are being treated for cancer.

E's bloodwork was fairly uneventful. They pricked his finger, and took the blood as opposed to accessing him through his port. We had him distracted with YouTube, so he was fairly co-operative.

The results were fine, but for the 2nd time in a row, his neutrophil counts were a bit higher than normal. We haven't heard anything from SickKids yet, but our nurse practitioner told us that they may want to bump up a couple of the dosages of his chemo meds.

According to https://www.AboutKidsHealth.ca, the goal of the Maintenance phase is "to consolidate and maintain remission....Blood work is important because doctors need to make sure that the amount of your child’s white blood cells (neutrophils) are not too high or too low. If they are too low, then the chemotherapy is killing too many marrow cells, making your child neutropenic and at risk for developing an infection. If the amount of neutrophils are too high, then the therapy is not killing enough hidden leukemia cells."

67) Lost and found

We took the kids out shopping the other night. We needed a few groceries, and J needed a few new clothes for kindergarten in September, so we went to Superstore. When it was time to leave, it was teeming rain outside. I had to make a dash for the car, and did my best to get the kids, my wife, and the groceries in the car without getting too drenched.

After having returned home, the kids were bathed, and put in their pajamas. My wife took J into his room for some stories, and I snuggled with E in our bed until he fell asleep. One small issue though: the location of E's soother. Yes, he's 2, and yes, he still has a soother. He has Goddamn leukemia, so don't try to lecture me on how we should take it away from him. It's small, it provides him comfort, and to be honest, I'm going to let him keep it until he's ready to be rid of it on his own. Anyway, the soother, we couldn't find it. We found a spare, and he happily took that, but I was bothered that his regular one was missing.

Where was the soother? The last place I remembered seeing it was at Superstore. Then the mess of the rain while we were trying to leave. He probably threw it on the floor while we cashed out, or when we were watching the rain at the entrance. Ugggh, it was probably lost.

After getting E to sleep, I hunted around the house for it, in case E came in the door and put it somewhere. I went out to the car, and looked around his car seat, and on the floor. I opened the trunk, and checked the stroller. Nothing. I was upset that it was missing, and started to have some swirling, stuck thoughts. All I could think about was the soother, and where it might have been lost. I searched my memory, trying to recall when I had last seen him with it, but I couldn't come up with anything.

Anyone who is still reading this far into my post is probably wondering why I'm so attached to a soother, and why I'm feeling upset that it's gone. Soothers are cheap - you can buy them for a few bucks at many stores. Well, it's not the soother I was upset about, it was the soother clip. He's had it since he was a baby, and it has an outer space scene with rocket ships & planets. Soothers have come, and gone, worn out, and been replaced, but the one constant has been the soother clip. I think in part because he's had it so long is the reason I have an emotional attachment to the soother clip. I've seen E with it for most of his life, and it's an item that traces back to before he had cancer. To have it suddenly be gone was upsetting to me.

We ended up finding it the next day; E had put it on a chair in the living room, and it was in a difficult-to-see spot.

I'm not sure whether it's an anxiety thing, if I have undiagnosed OCD, or if it's something else altogether, but every now and then, I have thoughts that get stuck. I feel like these thoughts consume me, and take most of my focus, until the issue can be resolved. To make matters worse, it's often over something small, and not overly significant, such as "I need to find my [blank]", or "I can't find the kids' toy [blank] that completes the set". Sometimes it's about a bigger life issue, and that just makes me completely miserable. Once in a while it can be a good thing: if I'm trying to solve a problem, or fix something, I'll focus on the issue until I find a solution. Even if it may take a couple of days.

66) Not the post I set out to write

This evening, I wanted to write. This evening, I tried to write. This evening, I failed to write.

I became ensnared with fixing a couple of technical issues, and now it's getting too late to think clearly about my post. The initial websites-not-loading problem was resolved with computer/router/modem reboots fairly quickly. Then, I somehow managed to notice that a specific key on my keyboard wasn't working. I didn't need to use that key, but it really bothered me that it wasn't working. I could have left it well enough alone, but I didn't. I tumbled down the rabbit hole because I felt compelled to fix it.

Perhaps it's because I'm a perfectionist. Perhaps it's because I'm obsessive compulsive when it comes to certain things. Perhaps it's a bit of column A, and a bit of column B. Regardless, I needed to fix the problem, and I wasn't going to stop until it was resolved. I felt like I needed to beat it; I needed to win.

I'm not going to get into boring technical details about the different avenues I tried, but I did end up fixing the problem. I'm feeling satisfied that I found a solution, but slightly irked that the cost of finding it was writing about my desired topic.

I guess that's life though: choosing one thing at the expense of another. And looking at my screen, and seeing a few paragraphs, I realize that I didn't fail. I did actually write something, it just wasn't the post I initially set out to write. Which may be the other lesson: choosing a different path can still get to your intended destination, you might just have different scenery along the way.

65) Hungry hungry hippo

Another steroid week has come, and gone. E took his last dose of dexomethasone for this month on Monday morning, and we've slowly been seeing his personality re-emerge from the cloud of steroids. We're still early on in Maintenance, but we've seen a different E on each of the last 3 steroid weeks:

1. In June, it was like he was on a placebo because there were seemingly no side-effects. No anger, no meltdowns, no increased appetite. It was both strange, and a pleasant surprise.
2. In July, it was crazy intense toddler roid-rage.
3. This month, August, there was a bit of the rage, but all he wanted to do was eat.

I've seen previous courses of steroids that have generally increased his appetite. With previous courses, his portion sizes had increased, and the spacing between meals had shrunk. This time though, was something else. He wanted to eat nonstop, and it was more sweets he wanted this go around. Cookies, chocolate, graham crackers, yogurt, fruit, and more - he ate it all. And just when he finished, he'd be saying "more", or "eat", and trying to get up into his highchair. He's really solid now, and noticeably heavier when you go to lift him. I swear he must have put on 5 pounds in a week. Now that we're 4 days on from dex, his appetite is returning to more normal levels, but he still seems to be eating a bit more than normal. It'll be interesting to see which E we get during steroid week next month.

64) July/August catch-up

It's been almost a month, and I've yet to write an update about E's lumbar puncture procedure from July. I figure it's about time, before my memories become foggier.

E is in Maintenance. That means his lumbar punctures, and therefore trips to SickKids are a bit more spaced out. We now go every 3 months, as opposed to having them once a month in frontline treatment.

If you recall, I had previously written about a phone call from E's oncologist to alert us to the fact that they had found some blasts in E's blood after a lumbar puncture procedure. Everything worked out in the end though. Sometimes, when the bone marrow is healing itself after chemotherapy, it emits blast cells. Not all blasts end up as leukemia cells though, some are just immature cells that are still developing. This is what E's oncologists figure had happened back in February. Due to illness, E's March lumbar puncture had to be pushed back, and we ended up having to wait 6 weeks instead of the usual 4, for the next procedure to test for the blasts. It was quite a stressful month-and-a-half of waiting, but we eventually got the all clear.

E's oncologists have told us that the first phase of Maintenance is the phase with the highest chance of relapse. As you successfully progress through maintenance, that chance of relapse decreases. Naturally then, between that tidbit of information, and the previous scare involving blasts, I had been quite nervous, worried, and apprehensive about the July lumbar puncture, given that it had been 12 weeks since the last procedure.

July 11th arrived, and my mother-in-law had slept over the night previous to help with getting J off to daycare. We were out the door before J was awake, and the trip downtown was better than I was anticipating. It was a light day for lumbar punctures, and there was only about 5 kids in total. We went through all of the pre-procedural steps: checking in, getting E's port accessed, height & weight, taking blood, and a visit with the oncology team. After that, it's just a case of sitting, and waiting for E's turn.

Right as we were called, there was a group of people around the nurses' station. At its centre was a boy who may have been about 8. It was apparently his last day of treatment, because they were bringing out the bell, and they were preparing to do the end of treatment ceremony. I congratulated the family as we walked past them to Cujo's Room for the lumbar puncture. Waiting to bring E in to the procedure room, we were able to witness the ceremony. The boy rang the bell, and afterward, he smashed a whip cream pie in his dad's face. I clapped when the group broke out into applause, and my eyes welled up with happiness for that family. I was also thinking about how far we've come from E's diagnosis, and how much further we still have to go before E has his turn to ring the bell.

E's lumbar puncture was uneventful. As usual, it went well with no problems. He slept for most of the hour post-procedure where he is supposed to lie flat. He woke up maybe 5 minutes before the hour was up, so we kept him entertained with YouTube, and some milk to drink. The results from his blood also came back clear. No blasts. I was able to breathe a huge sigh of relief.

Since then, he continues to receive his daily oral chemotherapy, though he's starting to despise it. We dissolve the pills in water inside of syringe, and then squirt the solution into his mouth for him to drink. He used to tolerate it, but lately it takes one adult to hold him down, and another adult to try and hold his head still while administering the dose. It's my least favourite part of the day. He's also been in for bloodwork at the satellite clinic on July 25th, which came back fine. Yesterday, August 8th, was another trip to the satellite for more bloodwork, and a push of vincristine through his port. Yesterday also marked the start of steroid week, so we'll see what kind of baby roid rage happens this month. And that about wraps my July/August catch-up.

63) https://www.AboutKidsHealth.ca

There's quite a bit of information, and misinformation on the internet with regard to health. When your kids are sick, it's easy, and tempting to use a search engine to find answers. The problem though, is how do you sort through what's real, and what's fake? What's trustworthy, and what's untrustworthy? What's accurate, and what's sensationalized? The glut of data, and sometimes conflicting points of view can make it difficult to when you're presented with a child who may need medical attention. In case of emergency, always dial 911.

Toronto's SickKids hospital hosts a website called AboutKidsHealth. Their mission is to "improve the health and wellbeing of children in Canada and around the world by making accessible health care information available via the Internet."

What exactly is AboutKidsHealth? It's an online source of health care information that is approved by doctors and nurses at SickKids. The website is full of "reliable, evidence-based health information", and is available in a variety of languages.

Back in March 2018, AboutKidsHealth was redesigned, and the current version is more responsive, sports a cleaner look, and makes articles & information easier to find. It still appears to run on the Microsoft SharePoint platform, but I won't hold that against them.

When searching for health information about your kids, even for smaller things like colds, fever, or cuts & scrapes, https://www.aboutkidshealth.ca should be your starting point because: science.

62) cancerversary

Last Sunday, July 22nd 2018 was E's one year cancerversary. In my previous post, I had stated we had wanted to do something to take back the awfulness of that day. We had decided on a family BBQ at my in-laws' house. The weather forecast for the weekend looked a bit sketchy, but we were hoping for the best. In an act bordering somewhere between pathetic fallacy, and deliberate sabotage, we awoke to find that the weather was not co-operating, and we were in for a day of rain. We postponed the BBQ, but still ended up going to my in-laws' house for dinner just to get ourselves away from the same four walls. It wasn't quite the celebratory day I had hoped for, but it also wasn't a "sit-around-and-feel-mopey" day either. I was still thinking about diagnosis day, verbally noting a few specific times, such as when we received the phone call that would forever change our lives, and when we received the news from the SickKids ER staff. I think I drove my wife a little batty with my observations, so sorry babe if you're reading this.

I also made a post to Facebook about the day, and I'm going to put it here for posterity's sake:

Today, on the one year anniversary of his leukemia diagnosis, we celebrate this little superhero for enduring countless amounts of blood work, needles, hospital visits, appointments, chemotherapy, and more. His hair has grown back enough that we took him to get it cut yesterday. He's such a strong, happy, smiley little guy, and even though it's a long process, we will ring that bell! #believe #FVCKcancer

61) That awful day

On Sunday July 22nd, 2018, we will mark the one year anniversary of E's leukemia diagnosis.

In the past couple of weeks, I've found myself thinking back to July 2017. I've had "On This Day" reminders pop up in Google Photos, where I'd taken pictures at family outings, or get-togethers. When I see E in those photos, all I can think is that he looks so yellow, he looks terrible, he looks sick. I remember the yellowing of his skin, and at the time dismissing it, and chalking it up to too many orange coloured foods. I look at ourselves in the photos, and I see a happy young family who had no idea about the horrors that were barreling toward us at breakneck speed. I see the last bits of our lives before cancer changed things forever.

Thankfully, and luckily, the leukemia was caught when we brought him to a pediatric chewing and swallowing specialist about a completely different issue. If that had never happened, he would have eventually been diagnosed, but I don't know in what time frame. E was asymptomatic at diagnosis; no apparent bruising, no extra tiredness, no weakness, no fever, just a cold that lasted a couple of weeks, and the yellowing skin. I don't beat myself up over it, but I suppose I'll always feel a twang of guilt for him being diagnosed in a roundabout way. That being said, would even the most worrywart, "Chicken Little" parent have even guessed cancer from their child having a cold & yellowish skin?

One year ago tomorrow, my wife and I were driving home after E had what we thought was routine bloodwork because the pediatric specialist thought he might be anemic. Two things happpened en route: 1) despite E's sensory issues to food textures, we discussed how lucky we were to have two healthy boys. And 2) we stopped at Real Canadian Superstore & were greeted by a SickKids volunteer who was soliciting monthly donations. We were already monthly donors, so he thanked us, and we continued along our way, unaware that we'd be on our way to that very hospital in just 16 short hours. I've written about them previously, but to this day, those two things still haunt me to my core.

One year ago this coming Sunday, we received phone calls from two separate doctors who told us to get to SickKids with our son E for further testing. It would be the beginning of our nightmare known as childhood leukemia.

Flash forward to today, almost one year on from diagnosis, and E's leukemia seems to be responding well to treatment. He's a happy little guy. His hair has grown back. He seems to be hitting all of his development milestones, but it's still tough. I hate he's had to go through this. I hate that we're going through this. I hate that our families, and friends are all going through it too. I'm not sure what we're going to do on Sunday, but I'd like to do something. It doesn't have to be big, or grandiose, but I'd like to do something so that we own the anniversary of that awful day, rather than it owning us.

60) "Teh Sicks"

It's been a rough couple of weeks around here. We've had a couple waves of "Teh Sicks" sweep through our household.

I can probably trace the beginnings of it back to about the middle of June; J had been extra tired, extra whiny, and his appetite had cratered. Skip ahead to the last Monday of June, J woke up, vomited in his bed, and was home sick for four days.

I picked it up on the Thursday, and played host to this awesome summer stomach bug for four days over the Canada Day long weekend. There wasn't a whole lot of vomiting, but it left me feeling exhausted, and constantly nauseous for about a 4 day stretch.

Almost immediately after Canada Day, J came down with croup, and few days later I picked up a scratchy throat and a bad head cold.

On Wednesday July 4th, E was given his weekly dose of methotrexate, but also seemingly picked up the stomach bug. It's impossible to know for certain because he's only 2, and he can't tell us how he feels. He vomited on a daily basis, unless we gave him a dose of ondansetron every 8 hours. We brought it to the attention of his oncologists after it went on for a few days, but they weren't overly concerned since he was able to eat and drink provided we gave him the anti-nausea medication. They seemed to think that it was likely nausea from the methotrexate that was exacerbated by a virus. E seems to be over "Teh Sicks" now, but he's picked up a cough, and an unbelievably runny nose. Go buy some shares in Kleenex.

Now, my wife has come down with the stomach bug, and she's been nauseous, and exhausted for a couple of days. She might have one more day of symptoms before they start to lift, if her symptoms follow my pattern. Even then, there's a day or two ramp-up to get yourself back to feeling 100%.

We stayed fairly healthy throughout most of the traditional cold & flu season this year, only to get nailed in the summertime, when it's usually a low time for circulating germs. Here's hoping for a germ-free remainder of summer '18.

59) Strong words

Hate is a strong word. Many people overuse it to the point where it loses some of its meaning. "I hate broccoli", "I hate those shoes", "I hate the smell of onions" are all examples of the misuse of the word.

You don't hate broccoli, you don't hate a pair of shoes, and you don't hate the smell of onions. They might not be your favourite, you might actively dislike them, but it's not actual gut-wrenching hatred.

That being said, I hate cancer. Nope, scratch that. I FUCKING hate cancer.

I hate what it has done to my little boy, how his own blood cells have turned against him. I hate how we have to pump his little body full of chemotherapy because the toxic drugs and their side effects are better than having leukemia. I hate not knowing how my older son has been or will be affected by having a brother with a life threatening illness. I hate the excessive stress, and anxiety my wife and I have lived with for almost a year. I hate how my thoughts betray me; how any small family medical issue causes me undue anguish, and worry that my older son, my wife, or I have cancer. I hate what my fears and despairs have done to me as a person. I hate you, cancer. I fucking hate you.

As a disclaimer, there's nothing bad that's happened to cause me to write this post. E is continuing on in maintenance, and if you were looking at him, he'd seem like a happy, active, normal 2 year old. These thoughts, and feelings have been simmering for a while.

58) A few random things

I've been struggling to write lately. Some of it feels like writer's block, but some of it is also due to having less time after dinner. We're well into June, approaching the summer solstice, meaning it's staying bright in the evenings, almost until 9:30pm. Because of the late light, the boys have had difficulties falling asleep. In the past two weeks, I think there have been maybe 3 or 4 nights where we haven't had to load at least one of the boys in the car, and drive around until they're out. Some evenings, they're not sleeping until 10:00 or 10:30pm, leaving minimal amounts of downtime.

For today's post, the first in a while, I'm just going to write about a few random things that have happened in the past little while. This was originally going to be last night's post, but J was having problems sleeping, so my wife asked if I could go lie down with him. I did, but I fell asleep too, and was TKO'ed for the night.

E just completed steroid week, and weirdly, it was fine. He sailed right through it. Almost every other time he's been on steroids, he's okay for the first 2 or 3 days, and then he turns into an emotional Baby Hulk. This time, I don't know been different, but there's next to nothing in terms of roid rage, and upset.

E has exited his PAW Patrol phase, and he's now into cars. Specifically Blaze and the Monster Machines, and Disney/Pixar Cars. If he's watching something, he usually wants Blaze, or Peppa Pig. He gets quite excited when one of his shows features a duck or a chicken. Most of his play activity involves driving around die cast cars of the Disney/Pixar Cars variety. He much prefers them over Hot Wheels, or Matchbox cars. Maybe it's the faces on the cars that he finds so alluring, I don't know.

The week before last, in a 24 hour span, E learned how to both push on the family room gate so that he can crawl underneath of it, and also how to climb out of his crib at will. He spent a couple of nights sleeping in our bed, in between us until there was a chance to convert his crib into a daybed, and buy a gate to install in his doorway.

J has been significantly better behaved for about the last 3 months, coinciding almost exactly with the time that he turned 4. He still has his moments though, but I suspect all 4 year olds might. J still has his poor appetite, and is picky like you wouldn't believe. We've also been giving him an iron supplement as directed by our family doctor. J has had low iron, likely due to his poor diet, and we think he's been feeling tired and unwell because of it. Whether it's the supplements helping him, or it's an age related maturity thing, a few of our worries and fears about him have recently eased, which is a good thing for two already stressed out parents.

A few weeks back, we were driving home from dinner at my in-laws' house. J was being his usual loud, fireball self in the back seat. I told him that if he settled down, and was asleep when we got home, I'd carry him up to bed. He didn't fall asleep, but he pretended to be asleep. I went along with it, and pretended to thinkg that he was asleep. I carried him to his bed, tucked him in, and didn't hear a peep out of him. My wife was SHOCKED that he stayed in his bed, but I said that he didn't have a choice. Because he had pretended to be asleep and I carried him inside, I could call his bluff if he revealed that he was actually awake. All of the sudden, we heard the sound of water running upstairs. My wife went up to investigate, and it was J. Under the category of c for cute, he'd gotten out of bed, and taken himself to the bathroom to brush his teeth because he didn't want to sleep without having done it.

I've mentioned in previous posts that now that E is in maintenance, he receives chemo every day. In our household, we go through a ridiculous amount of latex or nitrile gloves because we need to use a pair for every. Single. Diaper. Change. Recently, to entertain the boys, I've found that you can make a latex glove look like a chicken if you inflate it, tie it like a balloon, and then creatively use red, black, and yellow markers.

A latex glove inflated & coloured to resemble a chicken.

57) One full mini-cycle

We've completed one full mini-cycle of maintenance. A mini-cycle is 28 days, and there are 3 mini-cycles that make up one full Maintenance cycle which is 12 weeks long, or 84 days. E's cycles and mini-cycles start on Wednesdays, usually around the middle of the month.

Day 1 is a trip to SickKids for a lumbar puncture, a dose of methotrexate injected into his spinal fluid, and a push of vincristine. Day 1 is only a trip to SickKids every 3 months, meaning we go on the first day of Months 1, 4, 7, 10, etc. Otherwise we only go as far as Scarborough Centenary for a vincristine push.

Days 1 through 5 are also days where he receives steroids. The dose is administered at home. E usually isn't too bad for the first couple of days when he is on steroids. Days 3 to 5, & for couple of days after when he is getting the steroids out of his system, are pretty awful.

Days 1, 8, 15, and 22 are days when he receives 4 methotrexate tablets. If Day 1 is also a trip to SickKids, then we skip the methotrexate pills for that week because it is delivered intrathecally. Because he is so young, the tablets are dissolved in water. The dose is administered at home. The dissolved tablets turn the water yellow, and apparently taste quite awful. I'm inclined to believe it the way that two grown adults are needed to hold him down to squirt the syringe of liquid down his throat. Methotrexate day has to be one of my least favourite days.

Day 15 is also a hospital visit, but we only have to go as far as Scarborough Centenary, and he only needs to have bloodwork done.

E receives a mercaptopurine dose every day. Also known as 6MP, he receives a full tablet on Mondays, Wednesdays, and Fridays, and a half table on Tuesday, Thursdays, Saturdays, and Sundays. Again, because of his young age, the tablets are dissolved in water. It is also another drug that is administered at home. The tablets dissolve into flakes, and apparently don't have any taste. We usually don't have too many problems getting him to drink his "water" from the syringe.

E still needs his daily dose of Vitamin D, and also receives a dose of Septra at breakfast & dinner on Fridays, Saturdays, and Sundays.

Confused? Yeah, so am I. That's why the pharmacy department at SickKids gives out a medication calendar so you can check to see what medications need to be given on which days. It's a printout that we stick to the fridge with a magnet, and put a small checkmark next to medications after they're given. It's analog & low tech, but it works for us. I'm sure there's apps out there that could be installed on our phones that would ding & chirp with reminder alarms, but this has been working for us so far, so I don't really want to change it up.

56) Independent play

Today we attended a family function. Nothing big, just a Victoria Day BBQ at my in-laws' house. My mother-in-law, my father-in-law, my brother-in-law & his wife, my sister-in-law & her husband, as well as my three nephews. Add in my wife, J, E, & me, and that makes 8 adults & 5 kids (all boys) with ages of 6, 5, 4, 2, and 2.

My in-laws have a nice big back yard, and it's great during the warm weather seasons because it gives the active boys a place to run around and blow off some steam. The oldest two cousins generally get along well with each-other. Given the fact J is a bit younger, and three makes a crowd, things can get a little volatile once you throw him into the mix. J has toned it down a bit since turning 4, and he's been much better about getting on with his two older cousins as of late.

Once everyone had arrived, I noticed the oldest three boys grouped up. They started to play a running/chasing game. Not even a minute into the game, I saw J and E's 2 year old cousin race after the older boys to join them in their game. This 2 year old cousin is only 4 months older than E. I looked over at E, hopeful that he might see the group having fun, and run after them too. He was more interested in climbing the stairs, or climbing on chairs. He showed no interest in joining his older cousins in their game, and was focused on his own independent play.

My heart sank. I pointed it out to my wife, suggesting that E hasn't learned how to play with other kids. Unlike his slightly older cousin, he hasn't had the opportunity to play with a group of kids in daycare. E and J play together at home, so perhaps I'm reading too much into this. Maybe he was just more interested in climbing at that particular moment. Maybe E was just cranky because this is steroid week, and he didn't want to run with the other kids. Maybe I'm trying to compare different stages of development when I shouldn't be. A 4 month difference seems insignificant to me, but at the tender age of 2, I suppose 4 months contains a considerable amount of cognitive development. At that age, a 4 month gap is 1/6th your entire life.

I feel that I should point out that I'm not feeling jealousy, envy, or resentment about this. What I am feeling is worry, and anxiety. I also feel like my eyes were opened today. I feel like I'm hyper-aware that E has the potential to be behind his peers because of the cancer, or because of late and long term effects of the chemotherapy. Seeing him not join his cousins in play earlier today has only highlighted it in neon yellow marker. The doctors tell us that E was diagnosed at such a young age, he likely won't remember any of the terrible needle pokes, hospital stays, or short term chemo side-effects. While I believe that to be true, I also believe that the experiences he has (or is unable to have because of his leukemia) all subconsciously help to shape his personality and persona. E has things that he is forced to do, such as chemotherapy & needle pokes, as well as the things he's unable to do, such as attending daycare. How will such experiences, or absence of experiences affect his childhood development? At what point do I feel relief that he is at the stage he always should have been? Why did this all have to happen? What will..... Sometimes, it's all too much.

55) McHappy Day is tomorrow (May 2nd, 2018)

Tomorrow (May 2nd, 2018) is McHappy Day.

If you've never heard of McHappy Day, it's

"... an annual day of community giving in support of Ronald McDonald Houses and other local children’s charities. On Wednesday May 2nd for every Big Mac®, Happy Meal® or hot McCafé® beverage purchased, $1 will be donated to RMHC® and children’s charities across Canada."

 You can read more about it at the following link: https://www.mcdonalds.com/ca/en-ca/promotions/mchappyday.html

My family has been lucky that we didn't need to use Ronald McDonald House during E's leukemia treatment. E was diagnosed with standard risk ALL rather than high risk ALL, meaning we were able to bring him home after the initial 10 days in hospital. Children deemed high risk are kept in hospital for the entire 5 stages of frontline treatment until maintenance begins, which can be from 6 to 9 months in length. Families in this situation can speak to a hospital social worker who would set them up with Ronald McDonald House application. Ronald McDonald House allows families that live more than 55 km from the hospital to live together, while being close to the care they need.

Over the course of E's frontline treatment, we did have several multi-day hospital stays for fever, and illness. The hospital where we did 2 of our 3 separate stays did have a Ronald McDonald Family Room. This room was always staffed by a smiling, friendly volunteer. The room had sleep, and shower facilities available for parents. It also had a TV, books, internet access, coffee, tea, water, ice, food, snacks, a kettle, a microwave, a fridge, a toaster, and probably a couple other items I'm not remembering at this time. All of these things provided free of charge to parents of children staying in pediatrics, and they're generously provided by Ronald McDonald House Charities, and its donors.

The Ronald McDonald Family Room is classified as a respite area, so it allows parents a chance to recharge, only a short walk down the hallway from their sick child. I used this room numerous times a day over the course of our 2 multi-day stays at Scarborough Centenary. Sometimes, I just needed a mental break and I would spend a bit of time in the room sitting. More often, it was to make use of the fridge, kettle, or microwave. Several mornings, I made toast for breakfast, and during the day I'd pop in and out to get water as a relief against the parching dry hospital air. It really is a wonderful service provided by Ronald McDonald House Charities, and I can't thank them enough for providing such a clean, inviting facility. The Ronald McDonald Family Room supplies a few comforts from home that you otherwise take for granted. When you're in a hospital with your sick child, a normally simple task such as making tea, or reheating food can become much more difficult. Luckily, the Ronald McDonald Family Room was there to make things a bit easier.

So tomorrow, May 2nd, 2018, please consider patronizing McDonald's Canada to buy a Big Mac®, a Happy Meal®, or a hot McCafé® beverage so that Ronald McDonald House Charities can continue to help families in need, such as my own.

If, for whatever reason, you have reservations about supporting McDonald's Canada the corporation, donations can always be made directly to the Ronald McDonald House Charities at the following links:

Ronald McDonald House Canada - https://www.rmhccanada.ca/donation
Ronald McDonald House Toronto - https://2060.thankyou4caring.org/donate

Thank you! 

54) Maintenance

I'm happy to report that there weren't any problems with E's bloodwork on Tuesday April 17th, 2018. On Wednesday April 18th, almost 9 months to the day after diagnosis, we traveled to SickKids for a lumbar puncture to start the last phase of treatment known as Maintenance. Maintenance is the longest phase of treatment, and will last for approximately 2.5 years.

It's been quite a journey to get here, that's for sure. I've shed tears, lost weight, gained weight, lost sleep, cried, yelled, screamed, been at the end of my rope more than once, endured panic, anxiety, & worry that no parent should ever have to endure, and have likely shaved a few years off my life because of it all. But we're here.

I believe that I'm realistic about maintenance though. It's not some magic wand that will miraculously make everything better. There are still scheduled medical appointments; they're just a bit more spaced out than in frontline treatment. There will still likely be unscheduled hospital stays for fevers. E's hair may fall out again, or it may thin. There will still be the constant worry gnawing at the back of your mind, hoping that he continues to respond well to treatment. Every single diaper change for the next 2.5 years is going to require gloves. There's a regimen of at-home chemotherapy drugs that need to be administered on certain days, and at specific times. It's of paramount importance that these doses are not forgotten, and given at the correct time. And for 7 or 8 days of every month, we are going to have to live with the E-Hulk when it's steroid week. It's beyond difficult to see him so upset and out of sorts because of the dexamethasone. He can't tell us what is bothering him, and we can only guess at what he wants, and to try to calm him. It's basically having a child in meltdown/tantrum mode for a week. Admittedly, the steroid has the largest and worst side effects, but he has other chemo meds that can cause other issues, one example being decreased appetite. I wouldn't wish this experience on anyone.

But there's also an upside that comes with maintenance. The aforementioned decrease in the frequency of medical appointments can allow you to get back to a bit more normalcy in your life. Being out of frontline treatment, means that E won't be quite so immunocompromised, and we can do more things other than hide out in the house. Just this past weekend, we had some absolutely beautiful weather in the Toronto area, so we took both E, and J to the park. E was running around, going down the slides, and trying to climb everything on the playground; all things that a regular 2 year old kid would want to do. After 9 months of being shut-ins, it was a beautiful thing.

53) When will it be Spring? (At long last)

Flurries, and blowing snow looking south toward Lake Ontario - April 17, 2018.

Flurries, and blowing snow looking north - April 17, 2018.

Book found in Pediatrics with quite the poignant title

On Tuesday April 17th, we were at our satellite hospital in Scarborough for bloodwork. A bit of snow blew in while we were waiting for results, and we happened to find a children's book with a title that fit the current weather: "When will it be Spring?"

E has been fighting a cold for the past 10 days or so. No cough, but his nose has been running like a tap. I fully expected that the results would find him neutropenic, meaning our trip to SickKids would be bumped. Surprisingly, and happily, I ended up being wrong with my prediction. Everything came back fine, and all counts were within the normal range. We'd be off to SickKids the next day for a lumbar puncture and chemo. E's frontline leukemia treatment was now complete, and at long last, he'd be starting Maintenance!