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.
2018-05-21
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.
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.
2018-05-01
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
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!
If you've never heard of McHappy Day, it's
You can read more about it at the following link: https://www.mcdonalds.com/ca/en-ca/promotions/mchappyday.html"... 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."
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!
2018-04-23
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.
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.
2018-04-19
53) When will it be Spring? (At long last)
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| Flurries, and blowing snow looking south toward Lake Ontario - April 17, 2018. |
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| Flurries, and blowing snow looking north - April 17, 2018. |
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|
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!
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