2018-01-05

34) A Christmas story

Christmas has always meant a great deal to me. I grew up in an out-of-the-way small town in Northwestern Ontario. And by small, I mean ~1400 people small. Christmases were always cold, and snowy: idyllic if you will. An eerie sense of quiet would envelop you if you happened to be outisde during a heavy snowfall, the flakes accumulating, and burying everything in a blanket of white. There was always something wintery to do whether it was tobogganing, cross country skiing, or building snow forts. It was the kind of place where in mid-December you would walk into the woods surrounding the town, pick an evergreen tree, cut it down, and that would be your Christmas tree. As the days to Christmas counted down, the Christmas cards sent from afar piled up and were on display around the house. There were Santa letters to write, Christmas specials to watch, and lines to memorize for the class Christmas play. The inky blackness of night yielded more surprises; the many colours of the northern lights danced across the cold, starry skies. Our excitement grew to a fever pitch in the days leading up to the big day, undoubtedly further escalated when the Christmas Eve newscasts would report that Canadian radar had detected Santa’s sleigh taking off from the north pole.

Despite living far away from most of our family, we were never truly alone for Christmas. We had an uncle who lived a couple hours away who spent nearly every Christmas with us. Also, we had brave grandparents, who, several times, made the long journey to spend Christmas with us in the north. While it may have been nice to have lived closer so that we could more often see grandparents, aunts, uncles, and cousins, I don’t think I’d ever trade my perfect small town Christmas memories.

During the last few years, I've come to realize that it's more the pre-Christmas preparations that I love about the Holiday Season. Don't get me wrong, it’s wonderful to wake up on Christmas Morning and see what Santa has left under your tree, but more of my favourite Christmas memories are from before Christmas. I will forever remember putting up lights with my dad, decorating the house & tree, watching Christmas cartoons with my siblings, and baking cookies with my mom. Pre-Christmas is open-ended potential. Christmas Day is static and unbudging. The day is over so quickly, I feel it can never quite reach the lofty expectations of more than a month's worth of buildup. This Christmas Eve, I read an article from the BBC that just happened to be about this sentiment. If you’re interested in checking it out, here’s the link

http://www.bbc.com/news/stories-42426094

Part 1 | Part 2 | Part 3
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2017-12-29

33) End of year donations

This is a partial re-hash of one of my previous posts, but I believe it is something worthwhile to post a second time.

There's only a few days left in 2017, which means there's only a few days to make donations that count against the 2017 tax year. I don't always donate to the same organizations year after year. In 2015 for instance, I recalled a few news items or stories that affected me throughout the year, and I donated to those causes. In 2016, I picked a local charity, a national charity, an international charity, and a health-related charity. This year, I still need to make a decision about my final donations of 2017.

If you're planning on making any donations before the calendar rolls over, and you're looking to make a donation that helps kids, or kids with cancer, please consider donating to one of the following wonderful organizations:

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2017-12-26

32) Million Dollar Smiles

It's almost been 3 weeks since I wrote an update, but I haven't forgotten about this blog. More on that in a future post.

What I would first like to do is give recognition to an organization and one of its sponsor families. I'm talking about Million Dollar Smiles.
"Million Dollar Smiles was started with the simple goal of wanting to bring smiles to children facing life threatening illnesses. Million Dollar Smiles is a non-profit organization that provides support for families with children facing adversity from life threatening illnesses."
Two of their larger programs are: 1) the Summer Playground Build, where children have a special playground build in their backyard by volunteers, and 2) the Holiday Bear Drive, where giant teddy bears and gift cards are delivered to children. Million Dollar Smiles has hosted a Halloween Gala, and 2017 marked its 10th year. The past 3 galas have been located at Paradise Banquet Hall and Convention Centre in Vaughan, which co-incidentally is where my wife and I got married.

On Saturday December 16th, one of the Million Dollar Smiles sponsors families dropped off a big teddy bear for J, and a giant teddy bear for E. Also included was a gift card to Toys R Us. I took a few photos, but forgot to ask the family if they were okay with me posting the pics, or mentioning them by name, so I will not identify them. E was unfortunately not feeling very well that day, so the family did not get to see our regularly happy little guy. We had a brief, but charming conversation with them, and we learned that this was their 4th year of being involved with Million Dollar Smiles.

It was quite the heartwarming experience to have complete strangers make a donation that is personally delivered on their own time, all in the name of putting a smile on your sick child's face. All I can say is thank you from the bottom of my heart, but somehow that doesn't feel like it's enough.

E and J's teddy bears from Million Dollar Smiles

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2017-12-08

31) #$%! You


On his behalf, I'd like to dedicate this Headstones tune to E's leukemia:

*WARNING* NSFW lyrics


I'll quite often listen to this song while I'm getting ready on the mornings where we have to take E to an appointment for chemotherapy. It's my angry/cheese off leukemia song, and as dumb as it may sound, I sing along and imagine myself or E singing it to all the cancerous cells in his body.

I'm not going to try to get deep and analytical about the lyrics in this song, but I'm going to give my quick interpretation. While at the most basic level, this might seem like a song about a bad breakup. The protagonist knows it's going to be difficult, but recognizes that ultimately, he's better off without the antagonist, and he will endure. Being a fan of the Headstones & knowing a bit about their singer Hugh Dillon, I'm convinced that yes, it is a breakup song, but this song is about his breakup with heroin.

Regardless of my interpretation, I find there's enough lyrical content that I find relevant to E's cancer and treatment. The song helps me to focus, and feel reassured that yes, the chemo treatments are challenging and demanding, but perseverance will be worth it in the end. Because leukemia, E will get over you. Plus, when you're stressed out because your son is dealing with a serious illness, a little bit of gratuitous vulgarity is good for blowing off some steam.
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2017-12-06

30) Medals 4 Mettle

This post has been a long time coming. I've had several versions of it in my head, but I wanted to get it right, and there's been quite a bit going on that has prevented me from spending a bit of time to do it justice. Here goes:

One night in late October, I received a curious message from my friend C. I've known C since about 1995, meeting her when we worked together in retail. She was the one who introduced me to my wife, so in a way, this blog exists because of her. C's message included a YouTube link and a quick "Watch this video. I will explain when I see you guys on Saturday". The link was to the following:


I watched it and was perplexed.

Saturday rolled around, and C dropped by for a visit. During the visit, she explained that there was an organization known as Medals 4 Mettle. Their mission is as follows:

At Medals4Mettle we attach our branded ribbons (lanyards) to donated finishers’ medals (marathons, triathlons, half marathons and triathlons) and award them to children and adults for the mettle and courage they demonstrate battling cancer, chronic illness, trauma and other life challenges.
Unbeknownst to us, C had started a local chapter of Medals 4 Mettle, and was giving the first donated medal to our little E.

E's generously donated medal from Krista DuChene & Medals 4 Mettle.
C explained the connection between the video, and the medal:

Krista DuChene is a Canadian mother, dietician, and Olympian. In 2014, she fractured her femur defending her title at the Canadian Half Marathon Championships in Montreal. To fix the fracture, she required emergency surgery. In April 2015, after a mere 11.5 months of recovery and rehabilitation, Krista returned to the sport and raced in Rotterdam, Netherlands. Her time of 2:29:38 was her second fastest marathon, and qualified her as the first Canadian to race in the Olympic Women's Marathon in 20 years.

The medal you see above is the same medal that Krista won in Rotterdam, which qualified her for the Olympics. Krista included a wonderfully written note along with the medal, and we found the entire gesture to be thoroughly heartwarming.

 My wife and I had contacted Krista privately to thank her for her generous donation, to let her know how this memento recognizes the difficulties associated with E's cancer and chemotherapy treatments. It was beautiful and selfless for her to donate something of such great personal value to a family and a little boy that she didn't even know. I want to now thank her publicly, and to let her know that this medal hangs on a wall in E's room where he can see it every day. When he is old enough to understand, we will tell him Krista's story, where the medal came from, and how it came to be in his possession. On behalf of E, thank you Krista.

 Medals 4 Mettle
Medals 4 Mettle GTA Chapter
Krista DuChene 
Krista DuChene - Marathon Mom
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2017-12-04

29) Where we stand (Delayed Intensification)

A couple of weeks ago E finished his last chemotherapy treatment in the Interim Maintenance phase.

Following an almost two week break, he had bloodwork done, and started the Delayed Intensification phase on Wednesday November 29th. Delayed Intensification is a bit similar to the first phase, Induction, where the treatment is a bit more intense with the aim of hitting the leukemia, and hitting it hard to knock down any of the little bastard cells that still might be lingering. Delayed intensification means another round of dexamethasone (a steroid) which makes E cranky, moody, hungry, and restless. Most of the steroid side effects are on his personality, so it can be quite difficult to keep your patience when they seem constantly unhappy, and won't let themselves or you sleep. Today we were at SickKids for more chemo, a drug referred to as PEG-asparaginase. Referred to as PEG, this is one of the more concerning drugs with scary side effects. Administering too much of this drug, or administering it too quickly can result in permanent hearing loss. There is also increased risk of stroke with this drug. It also has a nasty side effect of causing reactions in patients, ranging from hives all the way up to anaphylaxis. In fact, right before E was due to receive his dose, a child in a room beside us had some sort of reaction, and a number of nurses went running to help. The child ended up being fine, but it puts an extra knot in your stomach when your son is due to receive his chemo.

E double fisting cookies while receiving chemo.

Today was quite a day. It started overnight with E waking up and keeping us up for half the night. I swear he's purposely trying to sabotage things on the days when I have to drive downtown. We were supposed to be at SickKids for 9 AM, but didn't arrive until 10:15 because we slept in due to E having us awake, and also wrestling with the 3 year old to get him off to daycare. We weren't expecting today's drug to be the PEG, and given that this was only the second (and last) time he received it, we had forgotten that it was a process. The drug has an extremely short lifespan, and isn't made until we arrive at the hospital. The pharmacy must have been busy today, and we had to wait about 2 hours after arrival for the drug to be made. Administering the drug is an hour-and-a-half process, and because of the potential for allergic reaction, you have to stay an additional 2 hours after the PEG has been infused. We left the house this morning at 9 AM, and we were finally finished and cleared to leave by 5:30 PM. Sitting in rush hour traffic to get home, we walked through the door a few minutes after 7 PM. We had to contact my mother-in-law to collect J from daycare because we quickly realized that it wasn't a short visit, and there was no way we were going to make it home on time. Through this whole ordeal with E's diagnosis, I've learned to be more patient and tolerant of hospital visits and waiting. Today was something else though, 10 hours of sitting in traffic, and waiting around for chemo, including a 3.5 hour stretch when we had to keep a 19 month old amused and confined in a room while he was hooked up to an IV. Quite an exhausting day that pushed us to our limits, and tested our patience for patience.
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2017-12-03

28) Not-so-fun facts about childhood leukemia

  1. Parents with babies or toddlers will need to wear gloves during diaper changes for 48 hours after a chemotherapy treatment so they are not exposed to the chemicals that are excreted through their child's urine and feces.
  2. A simple fever will mean a trip to SickKids or your satellite hospital with the potential of admission to determine the source of infection and whether it requires antibiotics.
  3. During the course of treatment, a 3 days per week dose of antibiotics is required to prevent a type of pneumonia to which oncology patients are susceptible.
  4. The drugs used to treat your child can have potential side effects including jaw pain, headache, mouth sores, dizziness, hair loss, nausea, and vomiting.
  5. Potential scarier side effects include bloody urine or stool, seizures, trouble breathing, blood clots, and stroke.
  6. Potential late term (down the road) effects include joint damage, weak bones, neurocognitive deficits, heart problems, and infertility.
  7.  Even when your child is in remission, there is an underlying fear of relapse or of secondary cancers.
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