On December 22nd, during the day, my wife returned to the hospital with J. Later that evening, I would take J back to the house, leaving my wife to stay with E.
This would be our new normal: one of us bringing J to the hospital, and the other one of us taking J back home after visiting for a number of hours. J was a handful at the hospital, often riding around the floor on a tricycle with one of us following him, telling him to slow down, and to watch where he is driving. If not on the tricycle, he'd be pushing the buttons on the hospital bed, making it go all the way up, or playing with toys in the playroom. The hospital fed E, but we were left to our own devices at mealtime. Breakfast was easy: instant oatmeal from home + hot water from the Ronald McDonald House Room. I'd compliment this with some fruit (also brought from home), or granola bars. Lunches and dinners were a bit more challenging, and usually ended up being instant soup, instant mac & cheese, Tim Hortons, or Subway.
On December 23rd, the results from the cultures came back. They showed that E did not have a bacterial infection. His fever was also gone. But, his neutrophil counts were still below 0.5. Because of the low neutophils, we'd be in hospital for at least one more night
As the days in the hospital ticked by, it became more apparent that we would likely not be home for Christmas. Christmas Day was supposed to have been with my side at my parents' house this year. Before having kids, we used to see both sides on Christmas Day, but it was just too difficult carting the littles frome house to house to house. So, after kids, we started to do Christmas Day by alternating sides from year to year. Keeping my family in the loop, we told them that there was an ever increasing likelihood that we wouldn't be discharged from the hospital. Similarly, with my wife's side, we told them that there were smaller and smaller chances that we would hosting on the 26th. We'd have to figure things out about when we could get together to celebrate Christmas and exchange gifts for the kids.
On December 24th, E's neutrophil counts were again below 0.5, so we wouldn't be going home for Christmas Eve either. We had a doctor, whom I believe made it his personal goal to try and get us home for Christmas for sake of the kids. He said he’d order a second blood test, to be done later in the day to see if E’s levels bounced up. In the meantime, I noticed that E’s nurse-practitioners from the POGO Satellite Clinic had arrived at the hospital. Shortly after, one of them popped her head in the door of our room and asked if we wanted to come down to the waiting area by reception because a group of people had arrived with a donation of toys for the kids who were in hospital. What a completely generous and selfless gesture. It completely warmed my heart to see the smiles on the faces of the children who, for one reason or another, had to be in the hospital at Christmastime. There will be more details about this toy drop in a future post. A second blood test was done around 6 pm to see if we could be discharged, and after waiting for the results, we found out that E had to stay. I packed up, got J dressed, and went home. J fell asleep in the car, and I carried him upstairs to put him in his bed when we got home. My wife and I had agreed to not exchange gifts this year. Experiencing some loss of income by taking care E while he is sick, extra expenses like hospital parking, as well as a lot of running around to E’s medical appointments, we agreed that buying gifts for each other was not practical and too much of a challenge. Nevertheless, I had a plan circumvent this. I was going to pick something up for her and put it under the tree and say it was a gift from the boys. Now that it was late on Christmas Eve, E was still in the hospital, and I was home alone with J, this plan was completely garbage.
On December 25th, Christmas Morning. J and I at home, E and my wife at the hospital. My wife and I had discussed that we wouldn't put our gifts under the tree because it would be impossible to get J out of the house to go to visit his brother if he knew he had presents. I discovered that Santa had been to visit, but he took the chimney that goes to the furnace room by mistake, and that was where he’d left the gifts. When we got to the hospital, we found that Santa had also paid a visit. He left a couple of gifts for E, and a gift for J. After visiting for a while, our nurse dropped in to let us know that on her and E’s doctor’s recommendation, we were going to be given "a pass", so that we could go home and spend Christmas with our boys. We'd have to come back the next day for more bloodwork, but we could get a short reprieve from the hospital. We returned to the house as a family, explaining to J that Santa had made a mistake and left the gifts in the wrong spot, and that it was time to open presents. We made some wonderful memories, and before you knew it, the night was over.
On December 26th, Boxing Day, we woke up, got ready, and headed back to the hospital. The temperature was quite frigid, so I dropped my wife, J, and E at the door, and went to park the car. By the time I got upstairs, our nurse was already in E's room and was in the process of taking his blood for the daily test. A couple of hours later, E's neutrophil results came back, and unfortunately, they were lower than they were the day previously. Dejected, I started to wonder if we'd be out of the hospital by New Year's. The strange thing was that E had started to perk up in the past 24 hours. His colour looked better, he had more energy, and he was babbling & singing like his usual self. We worried about how he could seemingly be feeling better, but his blood was telling us that he was doing worse.
I crashed that afternoon. I was at the end. I couldn't do the back-and-forth any more. We'd missed out on family time with both sides. We'd briefly been home on a pass for presents with the boys which was nice, but it felt like a tease. I just wanted my little boy to feel better, and have his blood results come back okay so that we could bring him home. I wanted to be anywhere but here. I was mentally taxed, and physically exhausted. I was beyond frustrated, and I just could’t do it anymore. Then, around dinner time, I was in the room with E while my wife and J were downstairs picking up some food. Our nurse came in to the room and promptly announced that we'd be going home that night! I was shocked. Apparently, SickKids had seen the latest blood results, and there was another marker in the blood that they had been watching called monocytes. Despite the low neutrophil counts, the monocytes had been trending up, and the oncologists at SickKids felt that it was an indication of recovery, and they cleared us to be discharged from the hospital. We were going home!
We’ve now been home for a little more than 6 days. I’ve been writing this epic post in fits and spurts, as time permits. For ease of reading, I’m likely going to split it into a few parts. Mentally, I’ve been up, and I’ve been down since we returned home. I’m happy that E is feeling better, and that we see his normal personality shining through once again. I’m happy that we’re home, and that we don’t have to do the back and forth dance, and that we don’t have to keep a 3 year old entertained and under control at the hospital without him having an epic meltdown. I’m also feeling sad, and down. This will often happen to me post-holdays, but this year it seems different. It’s really no one’s fault, but the plain and simple fact is that we missed out on Christmas this year. I’m not looking for pity, or sympathy, I’m trying to get things written down so they don’t infinitely rattle around in my head. We missed out on the last few ramp-up days before Christmas, the days where the kids are over-sugared, over-excited, and bouncing off the walls from anticipating the big day. We missed out on the last minute hustle-bustle, and preparations. Christmas meant so much to me as a child, and I just want to replicate the feelings of wonder and awe I had for my own children. I want Christmas to be a happy and magical time for my boys. The 4 of us were able to do presents, but we missed out on spending quality time with extended family. I realize that Christmas is just a day on the calendar, but it becomes difficult to recreate that magical spark when you’re doing your family celebrations later on. Now we’re out of the hospital and extended family is sick, so we’ve mostly been isolated while E continues to recover. Being in the hospital with E was beyond anyone’s control, but I feel like I’ve let my family down at Christmas. I commend all of the hospital staff, doctors, and nurses for taking such good care of us while we were there, but there really is no place like home for the holidays.
2018-01-05
35) A Christmas story part 2
Delayed Intensification
as the name implies, is a more intense phase of treatment for
leukemia. One of our oncologists referred to it as a phase where the
chemotherapy is analogous to "going after the cancerous cells
with a sledgehammer". It started November 29th, and was
scheduled to conclude and move on to Delayed Intensification II on
December 28th.
Poor little E had a lot thrown at him in the month of December. He had a week-on, week-off schedule of a steroid named dexamethasone, a drug named PEG-asparaginase which can potentially cause anaphylactic reactions or strokes, as well as weekly injections of vincristine, and doxorubicin. Doxorubicin is one of the new drugs this month, and E needed to be given an EKG before it was given because it can potentially cause heart problems when given in higher doses.
For most of the month, there were colds and sicknesses in the house. I had a stuffy nose and sore throat off and on throughout most of December. J brought croup home from daycare. My wife was also intermittently under the weather. But the month kept chugging along. E started getting a cold and a runny nose. Around the 13th, E's hair started falling out. It had previously fallen out during the first month known as Induction, but it had slowly started to grow back. Just touching his hair would cause it to drop, and for a few nights in a row, there were clumps of hair left floating in the water when his bath was done. More cracks started to appear, and the week beginning December 18th, we began to suspect something was up. E wasn't smiling as much, he wasn't babbling as much, and he seemed worn out. The dexamethasone was finished on the 19th, and we took E for a scheduled blood test at our satellite hospital on the 20th. Returning home from our blood test, E fell asleep for a couple of hours with me on the chesterfield, something he never does. Overnight, from the 20th to the 21st, E really wasn't feeling well, and in the early morning hours, he came down with a fever. A fever in an oncology patient means you are likely going to be admitted to the hospital for 48 hours minimum.
At the hospital, blood, and urine samples were taken so that cultures could be run on both. Being immunocompromised, it is potentially dangerous if E were to have a bacterial infection. Bloodwork showed that his neutrophil counts (a neutrophil is a type of white blood cell that is important for fighting infection) were below 0.5, meaning he was neutropenic, so we would be admitted to the hospital. Antibiotics are started right away, in case of bacterial infection. When the blood and urine cultures come back after 48 hours, antibiotics are either continued or stopped, depending on whether a bacterial infection is found.
Delayed Intensification II is supposed to be worse than Delayed Intensification I. Due to E's fever, and hospitalization, Delayed Intensification II has been pushed back a week, but it makes me worry about getting through the next 28 day phase.
Having to be admitted to the hospital with E just 4 days before Christmas was disappointing. My first priority was for his health and well being, but I was also feeling a lot of stress about things happening at home. We'd received a dumping of ~15cm of snow, so the driveway & sidewalk needed to be shoveled. Also, we’d fallen behind on laundry, presents needed to be wrapped, last minute items picked up, groceries bought, and the house tidied up since we were supposed to be hosting Christmas Brunch with my wife's side on the 26th. My wife and I decided we would trade off nights at the hospital with E, and at home with J. December 21st was the first hospital shift, and I stayed with E. My wife would go home with J.
Poor little E had a lot thrown at him in the month of December. He had a week-on, week-off schedule of a steroid named dexamethasone, a drug named PEG-asparaginase which can potentially cause anaphylactic reactions or strokes, as well as weekly injections of vincristine, and doxorubicin. Doxorubicin is one of the new drugs this month, and E needed to be given an EKG before it was given because it can potentially cause heart problems when given in higher doses.
For most of the month, there were colds and sicknesses in the house. I had a stuffy nose and sore throat off and on throughout most of December. J brought croup home from daycare. My wife was also intermittently under the weather. But the month kept chugging along. E started getting a cold and a runny nose. Around the 13th, E's hair started falling out. It had previously fallen out during the first month known as Induction, but it had slowly started to grow back. Just touching his hair would cause it to drop, and for a few nights in a row, there were clumps of hair left floating in the water when his bath was done. More cracks started to appear, and the week beginning December 18th, we began to suspect something was up. E wasn't smiling as much, he wasn't babbling as much, and he seemed worn out. The dexamethasone was finished on the 19th, and we took E for a scheduled blood test at our satellite hospital on the 20th. Returning home from our blood test, E fell asleep for a couple of hours with me on the chesterfield, something he never does. Overnight, from the 20th to the 21st, E really wasn't feeling well, and in the early morning hours, he came down with a fever. A fever in an oncology patient means you are likely going to be admitted to the hospital for 48 hours minimum.
At the hospital, blood, and urine samples were taken so that cultures could be run on both. Being immunocompromised, it is potentially dangerous if E were to have a bacterial infection. Bloodwork showed that his neutrophil counts (a neutrophil is a type of white blood cell that is important for fighting infection) were below 0.5, meaning he was neutropenic, so we would be admitted to the hospital. Antibiotics are started right away, in case of bacterial infection. When the blood and urine cultures come back after 48 hours, antibiotics are either continued or stopped, depending on whether a bacterial infection is found.
Delayed Intensification II is supposed to be worse than Delayed Intensification I. Due to E's fever, and hospitalization, Delayed Intensification II has been pushed back a week, but it makes me worry about getting through the next 28 day phase.
Having to be admitted to the hospital with E just 4 days before Christmas was disappointing. My first priority was for his health and well being, but I was also feeling a lot of stress about things happening at home. We'd received a dumping of ~15cm of snow, so the driveway & sidewalk needed to be shoveled. Also, we’d fallen behind on laundry, presents needed to be wrapped, last minute items picked up, groceries bought, and the house tidied up since we were supposed to be hosting Christmas Brunch with my wife's side on the 26th. My wife and I decided we would trade off nights at the hospital with E, and at home with J. December 21st was the first hospital shift, and I stayed with E. My wife would go home with J.
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
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
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:
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:
- Camp Ooch - https://www.ooch.org/camp/ways-to-give/ways-to-give
- Childhood Cancer Canada - https://www.childhoodcancer.ca/donate
- Pediatric Oncology Group of Ontario (POGO) - http://pogon.convio.net/donate
- SickKids Foundation - https://secure.sickkidsfoundation.com/donate
- Scarborough-Rouge Hospital (Centenary Site) - https://cause2give.unxvision.com/EDMWeb/DonationForm.aspx?FormID=408
- Children's Miracle Network - https://childrensmiraclenetwork.ca/donate
- Children's Wish Foundation - http://www.childrenswish.ca/donate/
- Make A Wish Canada - http://www.childrenswish.ca/donate/
- Hearth Place - http://hearthplace.org/donate/
- The Super Sophia Project - https://www.facebook.com/supersophiapurple/app/415675701824636/?ref=page_internal
- Ronald McDonald House Canada - https://www.rmhccanada.ca/donation
- Ronald McDonald House Toronto - https://2060.thankyou4caring.org/donate
- Ontario Parents Advocating for Children with Cancer (OPACC) - https://www.canadahelps.org/en/charities/opacc-ontario-parents-advocating-for-children-with-cancer/
- 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/
- Million Dollar Smiles - https://www.paypal.com/donate/?token=U4jWvU1ngoRxQ4ihtm3zi-q5BPb47q4tAEV40g2RRW4bH90pNmk6lxyp59hsS8qqQ63rpG&country.x=CA&locale.x=CA
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.
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.
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 |
2017-12-08
31) #$%! You
*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.
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:
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.
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| E's generously donated medal from Krista DuChene & Medals 4 Mettle. |
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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