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.
2018-06-27
2018-06-20
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.
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. |
2018-06-03
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.
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.
Subscribe to:
Posts (Atom)