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.
2018-04-23
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!
2018-04-09
52) Chemo & Easter Monday lumbar punctures
On Friday March 23rd, 2018, we went to our satellite hospital for another push of chemo meds. E's bloodwork was okay that day, so he received both vincristine, and methotrexate. The dose levels remained the same for him, and were not adjusted up or down. He seemed to tolerate this push better than the previous vincristine & methotrexate push; we didn't see any vomiting this time. The only change we noticed this go-round was with sleep. For 10 nights between the chemo push, and his next lumbar puncture, he was extremely restless at bedtime, and would not fall asleep. Every night, I would lie down to help him fall asleep, and he'd flip, flop, squirm, and roll over for at least an hour. I'd lie down with the intent to put him to bed, but in the end, I'd fall asleep with him.
Our next lumbar puncture occurred Monday April 2nd, 2018, which is Easter Monday here in Canada. I was in fact so surprised that the cancer day clinic was open on Easter Monday, that we called our contact nurse at SickKids to confirm that the appointment date was correct.
We had asked my mother to come out the night before, so that she could take care of J, and spend the day with him, since his daycare was closed for Easter Monday. We got away from the house not as early as I had wanted, but since it was a quasi-holiday, traffic was pretty much non-existent, and we were able to make the approximately 45 km drive in about 40 minutes. Much better than the 1.5 - 2 hour trip that we normally have to endure.
Due to Good Friday, Easter Monday at SickKids was busy. We've never seen so many kids waiting for a lumbar puncture before. E's lumbar puncture started around noon, but the procedure only takes maybe 10 minutes. They need to lie flat for an hour after the procedure is complete & E slept for most of it. He woke up with about maybe 10 minutes to go, and he was grumpy. My wife climbed into the recovery bed with him to try and calm him down, and I set to work getting some mild warmed up because at this point he'd been fasting for about 9 hours. He guzzled his milk & happily ate some Goldfish crackers while watching PAW Patrol. We still had a push of both vincristine & methotrexate, but our nurses informed us that they were still waiting for the pharmacy to send them up. I believe the chemo drugs arrived around 2, and everything was infused, flushed, and heparinized about 20 minutes later.
It turns out that a busy long day at SickKids was actually a good thing. We stopped to see our Contact Nurse before leaving to pick up our next appointment card, and she had some great news! The blasts which had been detected in blood from E's previous lumbar puncture had not been detected in this lumbar puncture. We'd been told not to worry, and we were trying to follow that advice, but we could finally stop holding our collective breath. It had been a busy day, and a longer than normal day, but the extra time had allowed us to still be at the hospital when the lab results came back. We could go home with this good news under our belts.
Our next lumbar puncture occurred Monday April 2nd, 2018, which is Easter Monday here in Canada. I was in fact so surprised that the cancer day clinic was open on Easter Monday, that we called our contact nurse at SickKids to confirm that the appointment date was correct.
We had asked my mother to come out the night before, so that she could take care of J, and spend the day with him, since his daycare was closed for Easter Monday. We got away from the house not as early as I had wanted, but since it was a quasi-holiday, traffic was pretty much non-existent, and we were able to make the approximately 45 km drive in about 40 minutes. Much better than the 1.5 - 2 hour trip that we normally have to endure.
Due to Good Friday, Easter Monday at SickKids was busy. We've never seen so many kids waiting for a lumbar puncture before. E's lumbar puncture started around noon, but the procedure only takes maybe 10 minutes. They need to lie flat for an hour after the procedure is complete & E slept for most of it. He woke up with about maybe 10 minutes to go, and he was grumpy. My wife climbed into the recovery bed with him to try and calm him down, and I set to work getting some mild warmed up because at this point he'd been fasting for about 9 hours. He guzzled his milk & happily ate some Goldfish crackers while watching PAW Patrol. We still had a push of both vincristine & methotrexate, but our nurses informed us that they were still waiting for the pharmacy to send them up. I believe the chemo drugs arrived around 2, and everything was infused, flushed, and heparinized about 20 minutes later.
It turns out that a busy long day at SickKids was actually a good thing. We stopped to see our Contact Nurse before leaving to pick up our next appointment card, and she had some great news! The blasts which had been detected in blood from E's previous lumbar puncture had not been detected in this lumbar puncture. We'd been told not to worry, and we were trying to follow that advice, but we could finally stop holding our collective breath. It had been a busy day, and a longer than normal day, but the extra time had allowed us to still be at the hospital when the lab results came back. We could go home with this good news under our belts.
2018-03-30
51) Dovetails & scratched pans
My wife and I have a good marriage. It's not perfect, but I don't think anyone's is. We work well together, and the skills & interests we bring to the relationship compliment each other. My wife doesn't like to cook, but I do. I don't like to do dishes, but my wife does. Grocery shopping isn't really my wife's thing, but I enjoy it. Similar to the above examples, many aspects of our marriage just dovetail nicely.
It's a grueling ordeal to have a child who is critically ill. I feel like a sponge that absorbs stress. I'm at my limit, but I'm still up to my eyeballs in stress, and lately I feel like I don't have anywhere else to put it.
I'm stressed out about E. Frontline treatment is almost done, and the Maintenance phase is on the horizon. We're still waiting for our next lumbar puncture after our oncologist told us that there were blasts found in E's spinal blood after his last procedure. His treatment seems to be continuing smoothly, but there's always the feeling that the relapse anvil is hanging over your head.
I'm stressed about J. He has some behaviour issues we're trying to sort out with things like play therapy etc., but I'm concerned. We don't know what it is that causes his outbursts and disruptive behaviour, and he's still to young to be officially diagnosed with anything. I already feel badly enough that E's leukemia is causing J to have an abnormal childhood. I just want him to be a happy little boy. I constantly worry that I don't have the energy and patience to properly deal with his personality and that he'll grow up resenting me.
I'm stressed about my wife. I'm not going to write about her problems, but I will say that she's had a few nagging minor health issues in the past couple of months, and I worry about her.
Stress & worry, worry & stress. It's a recurring theme. Along with it comes insomnia or restless sleep. I either can't fall asleep until after midnight, or I pass out for an unquiet night of slumber while I'm snuggling with E at his bedtime. I feel like a bundle of nerves from the moment I open my eyes in the morning. Combining stress with sleepless nights is never a good thing. It saps your patience. It atrophies the logical part of your brain. It transforms you into a grumpy, negative, bitter arsehole. I already have my own quirks and quarks: I'm a perfectionist, and I'm quite particular about things. I'm probably undiagnosed OCD if I want to talk about it openly and bluntly. I have problems letting go of thoughts that upset me, and they rattle around in my head. Everything going on with my family just brings my little idiosyncrasies a little more to the forefront.
Last Sunday, my wife decided to make pancakes for J. She used a metal spatula, and scratched our nonstick frying pan. I was quite upset about it, and I ruminated about it for most of the day. Now that the nonstick coating is scratched, the pan should probably be tossed. It's an annoyance, it could have easily been avoided, and now we'll probably need to buy a new one. When I think about what happened, I don't think I was upset about the scratch; I was upset about the symbolism of the scratch. My perfectionism was fully in play, but I think I was so bothered by it because like E's leukemia diagnosis, it was something that happened that was beyond my control. I think I'm in a state where I feel the need to be able to control certain parts of my life, because other aspects feel like they're just flapping in the wind.
It's a grueling ordeal to have a child who is critically ill. I feel like a sponge that absorbs stress. I'm at my limit, but I'm still up to my eyeballs in stress, and lately I feel like I don't have anywhere else to put it.
I'm stressed out about E. Frontline treatment is almost done, and the Maintenance phase is on the horizon. We're still waiting for our next lumbar puncture after our oncologist told us that there were blasts found in E's spinal blood after his last procedure. His treatment seems to be continuing smoothly, but there's always the feeling that the relapse anvil is hanging over your head.
I'm stressed about J. He has some behaviour issues we're trying to sort out with things like play therapy etc., but I'm concerned. We don't know what it is that causes his outbursts and disruptive behaviour, and he's still to young to be officially diagnosed with anything. I already feel badly enough that E's leukemia is causing J to have an abnormal childhood. I just want him to be a happy little boy. I constantly worry that I don't have the energy and patience to properly deal with his personality and that he'll grow up resenting me.
I'm stressed about my wife. I'm not going to write about her problems, but I will say that she's had a few nagging minor health issues in the past couple of months, and I worry about her.
Stress & worry, worry & stress. It's a recurring theme. Along with it comes insomnia or restless sleep. I either can't fall asleep until after midnight, or I pass out for an unquiet night of slumber while I'm snuggling with E at his bedtime. I feel like a bundle of nerves from the moment I open my eyes in the morning. Combining stress with sleepless nights is never a good thing. It saps your patience. It atrophies the logical part of your brain. It transforms you into a grumpy, negative, bitter arsehole. I already have my own quirks and quarks: I'm a perfectionist, and I'm quite particular about things. I'm probably undiagnosed OCD if I want to talk about it openly and bluntly. I have problems letting go of thoughts that upset me, and they rattle around in my head. Everything going on with my family just brings my little idiosyncrasies a little more to the forefront.
Last Sunday, my wife decided to make pancakes for J. She used a metal spatula, and scratched our nonstick frying pan. I was quite upset about it, and I ruminated about it for most of the day. Now that the nonstick coating is scratched, the pan should probably be tossed. It's an annoyance, it could have easily been avoided, and now we'll probably need to buy a new one. When I think about what happened, I don't think I was upset about the scratch; I was upset about the symbolism of the scratch. My perfectionism was fully in play, but I think I was so bothered by it because like E's leukemia diagnosis, it was something that happened that was beyond my control. I think I'm in a state where I feel the need to be able to control certain parts of my life, because other aspects feel like they're just flapping in the wind.
2018-03-23
50) Ceiling tile art
Some of the ceiling tiles on the pediatric floor at Scarborough Centenary have been transformed into beautiful works of art. I'm not sure of the history behind them, but I assume that they were done by former patients. Pardon the glare on a couple of the pictures - my camera doesn't take the best indoor pictures, and a few of the tiles were right beside fluorescent lights.
2018-03-20
49) Up to speed at this point in time
It's March. I can't even really say it's the middle of March anymore. It's quickly getting to be late March, and today is the first day of spring here in the northern hemisphere. I feel like I haven't written anything in such a long time. I did publish an entry about more dietary changes, but it was more or less polishing up a draft & scooping a few more ideas out of my head. I haven't written updates about E. I haven't written updates about how I'm feeling. There hasn't been a whole lot of motivation again. I don't want to endlessly repeat myself, and I don't want to churn out haphazard posts. I'm still a bit on edge about E's oncologist telling us they found blasts in his blood after his last lumbar puncture. Previously when I needed a distraction, I may have written, but lately I've found myself more drawn to flinging technicolour birds at green pigs, or matching different types of candy.
I guess I'll start off with an update about what's going on. I had to revisit my post from 3 weeks ago to figure out where I had left off.
Interim Maintenance II. E had chemotherapy on Friday March 2nd. We dosed him up with ondansetron every 8 hours for a few days, and the vomiting from the previous chemo push did not return.
On Sunday March 4th, we celebrated J's 4th birthday. We took J's grandparents, aunts, uncles, and first cousins to an indoor playground for a couple of hours. I was hesitant about taking E out to such a place when he's immunocompromised. I had spoken to E's nurse-practitioner about it when we were at the chemo appointment on the Friday, and she said it should be okay to bring him. His counts happened to be excellent, and she emphasized extra hand washing, hand sanitizer, and sanitizing wipes, so I felt better about it. Initially, he stayed in the little kid area, but I made the mistake of carrying him up the playstructure and taking him down the slide on my lap. Oh, I created a monster. After that, he didn't want to have anything to do with the little kid area, and all he wanted to do was go on the slide. Myself included, there must have been 5 different adults taking turns going down the slide with him. He was unstoppable. It was great to see his smiles, hear his giggles, and see a glimpse of what might have been, had he not been diagnosed with leukemia 7 months previous.
On Wednesday March 7th, we took E to the chewing and swallowing clinic for an appointment on how to help him with eating solids. We brought a number of different snacks with us, and the two ladies observed E interacting with the food. He now accepts crunchy foods such as crackers or cookies whereas last year, they would have made him gag or vomit. So, we have made some progress since our last visit, but it's going to be a slow process. We're on the right track, so just do more of what we're already doing, and sensory bins.
When Saturday March 10th rolled around, E had a bit of a cold coming on. I don't think he picked up anything from the indoor playground since too many days had passed. It was more likely that J had shared a virus from daycare. We put a cool mist humidifier in his room at night, and wiped his drippy nose by day.
On Monday March 12th, we went to our satellite hospital for chemo. In Interim Maintenance II, you need to do bloodwork, wait for the results, and then you get the go-ahead for chemo if the counts are okay. E's counts were fine, with the exception of his neutrophils. They were 0.2, which lower than the threshold of 0.5, meaning he was neutropenic. Go home, and come back on Friday we were told. Being bumped back 4 days would also mean his lumbar puncture would be bumped back by 4 days, and my wife and I are both anxious to see whether the blasts are gone from his spinal blood.
The rest of the week went by with E fighting his cold, and us fighting the lingering effects of switching to Daylight Saving Time. Ugh. I've never been so tired as I have this year with the time change. It's 2018! Why are we still springing forward, and falling back? Saving energy? I don't believe that for one bit. Especially now, when most people have LED lighting, or compact fluorescent bulbs in their homes. I suspect that food preparation is a much larger power draw than low wattage lighting, and you're not going to get people to stop using their ovens to cook dinner. Just end the time change silliness already! Please.
On Friday March 16th, we were back to the satellite hospital. Again, E's counts were fine, with the exception of his neutrophils. They'd dropped to 0.1. Our nurse called SickKids to see how we should proceed. SickKids said that E should get a dose of vincristine (which does not affect neutrophils), but the dose of methotrexate would be abandoned for this week. The rest of our schedule was rearranged, with E's next lumbar puncture being bumped back to the first week of April.
And that basically brings us up to speed at this point in time in the month of March 2018.
I guess I'll start off with an update about what's going on. I had to revisit my post from 3 weeks ago to figure out where I had left off.
Interim Maintenance II. E had chemotherapy on Friday March 2nd. We dosed him up with ondansetron every 8 hours for a few days, and the vomiting from the previous chemo push did not return.
On Sunday March 4th, we celebrated J's 4th birthday. We took J's grandparents, aunts, uncles, and first cousins to an indoor playground for a couple of hours. I was hesitant about taking E out to such a place when he's immunocompromised. I had spoken to E's nurse-practitioner about it when we were at the chemo appointment on the Friday, and she said it should be okay to bring him. His counts happened to be excellent, and she emphasized extra hand washing, hand sanitizer, and sanitizing wipes, so I felt better about it. Initially, he stayed in the little kid area, but I made the mistake of carrying him up the playstructure and taking him down the slide on my lap. Oh, I created a monster. After that, he didn't want to have anything to do with the little kid area, and all he wanted to do was go on the slide. Myself included, there must have been 5 different adults taking turns going down the slide with him. He was unstoppable. It was great to see his smiles, hear his giggles, and see a glimpse of what might have been, had he not been diagnosed with leukemia 7 months previous.
On Wednesday March 7th, we took E to the chewing and swallowing clinic for an appointment on how to help him with eating solids. We brought a number of different snacks with us, and the two ladies observed E interacting with the food. He now accepts crunchy foods such as crackers or cookies whereas last year, they would have made him gag or vomit. So, we have made some progress since our last visit, but it's going to be a slow process. We're on the right track, so just do more of what we're already doing, and sensory bins.
When Saturday March 10th rolled around, E had a bit of a cold coming on. I don't think he picked up anything from the indoor playground since too many days had passed. It was more likely that J had shared a virus from daycare. We put a cool mist humidifier in his room at night, and wiped his drippy nose by day.
On Monday March 12th, we went to our satellite hospital for chemo. In Interim Maintenance II, you need to do bloodwork, wait for the results, and then you get the go-ahead for chemo if the counts are okay. E's counts were fine, with the exception of his neutrophils. They were 0.2, which lower than the threshold of 0.5, meaning he was neutropenic. Go home, and come back on Friday we were told. Being bumped back 4 days would also mean his lumbar puncture would be bumped back by 4 days, and my wife and I are both anxious to see whether the blasts are gone from his spinal blood.
The rest of the week went by with E fighting his cold, and us fighting the lingering effects of switching to Daylight Saving Time. Ugh. I've never been so tired as I have this year with the time change. It's 2018! Why are we still springing forward, and falling back? Saving energy? I don't believe that for one bit. Especially now, when most people have LED lighting, or compact fluorescent bulbs in their homes. I suspect that food preparation is a much larger power draw than low wattage lighting, and you're not going to get people to stop using their ovens to cook dinner. Just end the time change silliness already! Please.
On Friday March 16th, we were back to the satellite hospital. Again, E's counts were fine, with the exception of his neutrophils. They'd dropped to 0.1. Our nurse called SickKids to see how we should proceed. SickKids said that E should get a dose of vincristine (which does not affect neutrophils), but the dose of methotrexate would be abandoned for this week. The rest of our schedule was rearranged, with E's next lumbar puncture being bumped back to the first week of April.
And that basically brings us up to speed at this point in time in the month of March 2018.
2018-03-15
48) No more Uncle Hot Sauce
If you've ever shared a meal with me, you know how much I love hot sauce. The heat, the spiciness, the smoky flavour, and the tingling burn in your mouth - I love it all. I even have a nephew who half-jokingly calls me Uncle Hot Sauce. I've come to question whether I actually like food, or whether I just use it as a means to get hot sauce.
Well, it's splitsville for me and spicy food. No more Uncle Hot Sauce.
A couple of months after E's diagnosis, I started noticing that I couldn't handle hot sauce the way that I used to. I'm not going to delve into all of the gory details, but I was experiencing pain and discomfort during the digestion process. I tried cutting down both the frequency and quantity of my hot sauce consumption, but I still couldn't handle it. I really only noticed a difference when I cut it out of my diet entirely.
Now I'm at the point of not being able to eat hot sauce, but also finding problems with other sources of spice. Too much black pepper will now give me problems, as well as Swiss Chalet sauce, which, if you're not Canadian, can best be described as a style of chicken gravy with a zing.
I wanted to know why, so I did an internet search. According to this website, chronic stress can cause your body's metabolism to slow. A slower metabolism means that food isn't digested as well, so spicy foods are going to cause more problems than normal.
Well, it's splitsville for me and spicy food. No more Uncle Hot Sauce.
A couple of months after E's diagnosis, I started noticing that I couldn't handle hot sauce the way that I used to. I'm not going to delve into all of the gory details, but I was experiencing pain and discomfort during the digestion process. I tried cutting down both the frequency and quantity of my hot sauce consumption, but I still couldn't handle it. I really only noticed a difference when I cut it out of my diet entirely.
Now I'm at the point of not being able to eat hot sauce, but also finding problems with other sources of spice. Too much black pepper will now give me problems, as well as Swiss Chalet sauce, which, if you're not Canadian, can best be described as a style of chicken gravy with a zing.
I wanted to know why, so I did an internet search. According to this website, chronic stress can cause your body's metabolism to slow. A slower metabolism means that food isn't digested as well, so spicy foods are going to cause more problems than normal.
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