We took E to the satellite hospital the other day for an appointment to do some regularly scheduled bloodwork.
We saw a mom & little girl who we know that were admitted for fever. :( They're in a difficult stage of treatment, so I hope her counts come up, her cultures come back negative, and that her fever breaks without having to spend too many days in hospital.
We helped E to paint a rock that will be going in a special rock garden at the hospital. All of the rocks in this garden will have been painted by children who are being treated for cancer.
E's bloodwork was fairly uneventful. They pricked his finger, and took the blood as opposed to accessing him through his port. We had him distracted with YouTube, so he was fairly co-operative.
The results were fine, but for the 2nd time in a row, his neutrophil counts were a bit higher than normal. We haven't heard anything from SickKids yet, but our nurse practitioner told us that they may want to bump up a couple of the dosages of his chemo meds.
According to https://www.AboutKidsHealth.ca, the goal of the Maintenance phase is "to consolidate and maintain remission....Blood work is important because doctors need to make sure that the amount of your
child’s white blood cells (neutrophils) are not too high or too low. If
they are too low, then the chemotherapy is killing too many marrow
cells, making your child neutropenic and at risk for developing an
infection. If the amount of neutrophils are too high, then the therapy is
not killing enough hidden leukemia cells."
2018-08-24
67) Lost and found
We took the kids out shopping the other night. We needed a few groceries, and J needed a few new clothes for kindergarten in September, so we went to Superstore. When it was time to leave, it was teeming rain outside. I had to make a dash for the car, and did my best to get the kids, my wife, and the groceries in the car without getting too drenched.
After having returned home, the kids were bathed, and put in their pajamas. My wife took J into his room for some stories, and I snuggled with E in our bed until he fell asleep. One small issue though: the location of E's soother. Yes, he's 2, and yes, he still has a soother. He has Goddamn leukemia, so don't try to lecture me on how we should take it away from him. It's small, it provides him comfort, and to be honest, I'm going to let him keep it until he's ready to be rid of it on his own. Anyway, the soother, we couldn't find it. We found a spare, and he happily took that, but I was bothered that his regular one was missing.
Where was the soother? The last place I remembered seeing it was at Superstore. Then the mess of the rain while we were trying to leave. He probably threw it on the floor while we cashed out, or when we were watching the rain at the entrance. Ugggh, it was probably lost.
After getting E to sleep, I hunted around the house for it, in case E came in the door and put it somewhere. I went out to the car, and looked around his car seat, and on the floor. I opened the trunk, and checked the stroller. Nothing. I was upset that it was missing, and started to have some swirling, stuck thoughts. All I could think about was the soother, and where it might have been lost. I searched my memory, trying to recall when I had last seen him with it, but I couldn't come up with anything.
Anyone who is still reading this far into my post is probably wondering why I'm so attached to a soother, and why I'm feeling upset that it's gone. Soothers are cheap - you can buy them for a few bucks at many stores. Well, it's not the soother I was upset about, it was the soother clip. He's had it since he was a baby, and it has an outer space scene with rocket ships & planets. Soothers have come, and gone, worn out, and been replaced, but the one constant has been the soother clip. I think in part because he's had it so long is the reason I have an emotional attachment to the soother clip. I've seen E with it for most of his life, and it's an item that traces back to before he had cancer. To have it suddenly be gone was upsetting to me.
We ended up finding it the next day; E had put it on a chair in the living room, and it was in a difficult-to-see spot.
I'm not sure whether it's an anxiety thing, if I have undiagnosed OCD, or if it's something else altogether, but every now and then, I have thoughts that get stuck. I feel like these thoughts consume me, and take most of my focus, until the issue can be resolved. To make matters worse, it's often over something small, and not overly significant, such as "I need to find my [blank]", or "I can't find the kids' toy [blank] that completes the set". Sometimes it's about a bigger life issue, and that just makes me completely miserable. Once in a while it can be a good thing: if I'm trying to solve a problem, or fix something, I'll focus on the issue until I find a solution. Even if it may take a couple of days.
After having returned home, the kids were bathed, and put in their pajamas. My wife took J into his room for some stories, and I snuggled with E in our bed until he fell asleep. One small issue though: the location of E's soother. Yes, he's 2, and yes, he still has a soother. He has Goddamn leukemia, so don't try to lecture me on how we should take it away from him. It's small, it provides him comfort, and to be honest, I'm going to let him keep it until he's ready to be rid of it on his own. Anyway, the soother, we couldn't find it. We found a spare, and he happily took that, but I was bothered that his regular one was missing.
Where was the soother? The last place I remembered seeing it was at Superstore. Then the mess of the rain while we were trying to leave. He probably threw it on the floor while we cashed out, or when we were watching the rain at the entrance. Ugggh, it was probably lost.
After getting E to sleep, I hunted around the house for it, in case E came in the door and put it somewhere. I went out to the car, and looked around his car seat, and on the floor. I opened the trunk, and checked the stroller. Nothing. I was upset that it was missing, and started to have some swirling, stuck thoughts. All I could think about was the soother, and where it might have been lost. I searched my memory, trying to recall when I had last seen him with it, but I couldn't come up with anything.
Anyone who is still reading this far into my post is probably wondering why I'm so attached to a soother, and why I'm feeling upset that it's gone. Soothers are cheap - you can buy them for a few bucks at many stores. Well, it's not the soother I was upset about, it was the soother clip. He's had it since he was a baby, and it has an outer space scene with rocket ships & planets. Soothers have come, and gone, worn out, and been replaced, but the one constant has been the soother clip. I think in part because he's had it so long is the reason I have an emotional attachment to the soother clip. I've seen E with it for most of his life, and it's an item that traces back to before he had cancer. To have it suddenly be gone was upsetting to me.
We ended up finding it the next day; E had put it on a chair in the living room, and it was in a difficult-to-see spot.
I'm not sure whether it's an anxiety thing, if I have undiagnosed OCD, or if it's something else altogether, but every now and then, I have thoughts that get stuck. I feel like these thoughts consume me, and take most of my focus, until the issue can be resolved. To make matters worse, it's often over something small, and not overly significant, such as "I need to find my [blank]", or "I can't find the kids' toy [blank] that completes the set". Sometimes it's about a bigger life issue, and that just makes me completely miserable. Once in a while it can be a good thing: if I'm trying to solve a problem, or fix something, I'll focus on the issue until I find a solution. Even if it may take a couple of days.
2018-08-19
66) Not the post I set out to write
This evening, I wanted to write. This evening, I tried to write. This evening, I failed to write.
I became ensnared with fixing a couple of technical issues, and now it's getting too late to think clearly about my post. The initial websites-not-loading problem was resolved with computer/router/modem reboots fairly quickly. Then, I somehow managed to notice that a specific key on my keyboard wasn't working. I didn't need to use that key, but it really bothered me that it wasn't working. I could have left it well enough alone, but I didn't. I tumbled down the rabbit hole because I felt compelled to fix it.
Perhaps it's because I'm a perfectionist. Perhaps it's because I'm obsessive compulsive when it comes to certain things. Perhaps it's a bit of column A, and a bit of column B. Regardless, I needed to fix the problem, and I wasn't going to stop until it was resolved. I felt like I needed to beat it; I needed to win.
I'm not going to get into boring technical details about the different avenues I tried, but I did end up fixing the problem. I'm feeling satisfied that I found a solution, but slightly irked that the cost of finding it was writing about my desired topic.
I guess that's life though: choosing one thing at the expense of another. And looking at my screen, and seeing a few paragraphs, I realize that I didn't fail. I did actually write something, it just wasn't the post I initially set out to write. Which may be the other lesson: choosing a different path can still get to your intended destination, you might just have different scenery along the way.
I became ensnared with fixing a couple of technical issues, and now it's getting too late to think clearly about my post. The initial websites-not-loading problem was resolved with computer/router/modem reboots fairly quickly. Then, I somehow managed to notice that a specific key on my keyboard wasn't working. I didn't need to use that key, but it really bothered me that it wasn't working. I could have left it well enough alone, but I didn't. I tumbled down the rabbit hole because I felt compelled to fix it.
Perhaps it's because I'm a perfectionist. Perhaps it's because I'm obsessive compulsive when it comes to certain things. Perhaps it's a bit of column A, and a bit of column B. Regardless, I needed to fix the problem, and I wasn't going to stop until it was resolved. I felt like I needed to beat it; I needed to win.
I'm not going to get into boring technical details about the different avenues I tried, but I did end up fixing the problem. I'm feeling satisfied that I found a solution, but slightly irked that the cost of finding it was writing about my desired topic.
I guess that's life though: choosing one thing at the expense of another. And looking at my screen, and seeing a few paragraphs, I realize that I didn't fail. I did actually write something, it just wasn't the post I initially set out to write. Which may be the other lesson: choosing a different path can still get to your intended destination, you might just have different scenery along the way.
2018-08-17
65) Hungry hungry hippo
Another steroid week has come, and gone. E took his last dose of dexomethasone for this month on Monday morning, and we've slowly been seeing his personality re-emerge from the cloud of steroids. We're still early on in Maintenance, but we've seen a different E on each of the last 3 steroid weeks:
- In June, it was like he was on a placebo because there were seemingly no side-effects. No anger, no meltdowns, no increased appetite. It was both strange, and a pleasant surprise.
- In July, it was crazy intense toddler roid-rage.
- This month, August, there was a bit of the rage, but all he wanted to do was eat.
2018-08-09
64) July/August catch-up
It's been almost a month, and I've yet to write an update about E's lumbar puncture procedure from July. I figure it's about time, before my memories become foggier.
E is in Maintenance. That means his lumbar punctures, and therefore trips to SickKids are a bit more spaced out. We now go every 3 months, as opposed to having them once a month in frontline treatment.
If you recall, I had previously written about a phone call from E's oncologist to alert us to the fact that they had found some blasts in E's blood after a lumbar puncture procedure. Everything worked out in the end though. Sometimes, when the bone marrow is healing itself after chemotherapy, it emits blast cells. Not all blasts end up as leukemia cells though, some are just immature cells that are still developing. This is what E's oncologists figure had happened back in February. Due to illness, E's March lumbar puncture had to be pushed back, and we ended up having to wait 6 weeks instead of the usual 4, for the next procedure to test for the blasts. It was quite a stressful month-and-a-half of waiting, but we eventually got the all clear.
E's oncologists have told us that the first phase of Maintenance is the phase with the highest chance of relapse. As you successfully progress through maintenance, that chance of relapse decreases. Naturally then, between that tidbit of information, and the previous scare involving blasts, I had been quite nervous, worried, and apprehensive about the July lumbar puncture, given that it had been 12 weeks since the last procedure.
July 11th arrived, and my mother-in-law had slept over the night previous to help with getting J off to daycare. We were out the door before J was awake, and the trip downtown was better than I was anticipating. It was a light day for lumbar punctures, and there was only about 5 kids in total. We went through all of the pre-procedural steps: checking in, getting E's port accessed, height & weight, taking blood, and a visit with the oncology team. After that, it's just a case of sitting, and waiting for E's turn.
Right as we were called, there was a group of people around the nurses' station. At its centre was a boy who may have been about 8. It was apparently his last day of treatment, because they were bringing out the bell, and they were preparing to do the end of treatment ceremony. I congratulated the family as we walked past them to Cujo's Room for the lumbar puncture. Waiting to bring E in to the procedure room, we were able to witness the ceremony. The boy rang the bell, and afterward, he smashed a whip cream pie in his dad's face. I clapped when the group broke out into applause, and my eyes welled up with happiness for that family. I was also thinking about how far we've come from E's diagnosis, and how much further we still have to go before E has his turn to ring the bell.
E's lumbar puncture was uneventful. As usual, it went well with no problems. He slept for most of the hour post-procedure where he is supposed to lie flat. He woke up maybe 5 minutes before the hour was up, so we kept him entertained with YouTube, and some milk to drink. The results from his blood also came back clear. No blasts. I was able to breathe a huge sigh of relief.
Since then, he continues to receive his daily oral chemotherapy, though he's starting to despise it. We dissolve the pills in water inside of syringe, and then squirt the solution into his mouth for him to drink. He used to tolerate it, but lately it takes one adult to hold him down, and another adult to try and hold his head still while administering the dose. It's my least favourite part of the day. He's also been in for bloodwork at the satellite clinic on July 25th, which came back fine. Yesterday, August 8th, was another trip to the satellite for more bloodwork, and a push of vincristine through his port. Yesterday also marked the start of steroid week, so we'll see what kind of baby roid rage happens this month. And that about wraps my July/August catch-up.
E is in Maintenance. That means his lumbar punctures, and therefore trips to SickKids are a bit more spaced out. We now go every 3 months, as opposed to having them once a month in frontline treatment.
If you recall, I had previously written about a phone call from E's oncologist to alert us to the fact that they had found some blasts in E's blood after a lumbar puncture procedure. Everything worked out in the end though. Sometimes, when the bone marrow is healing itself after chemotherapy, it emits blast cells. Not all blasts end up as leukemia cells though, some are just immature cells that are still developing. This is what E's oncologists figure had happened back in February. Due to illness, E's March lumbar puncture had to be pushed back, and we ended up having to wait 6 weeks instead of the usual 4, for the next procedure to test for the blasts. It was quite a stressful month-and-a-half of waiting, but we eventually got the all clear.
E's oncologists have told us that the first phase of Maintenance is the phase with the highest chance of relapse. As you successfully progress through maintenance, that chance of relapse decreases. Naturally then, between that tidbit of information, and the previous scare involving blasts, I had been quite nervous, worried, and apprehensive about the July lumbar puncture, given that it had been 12 weeks since the last procedure.
July 11th arrived, and my mother-in-law had slept over the night previous to help with getting J off to daycare. We were out the door before J was awake, and the trip downtown was better than I was anticipating. It was a light day for lumbar punctures, and there was only about 5 kids in total. We went through all of the pre-procedural steps: checking in, getting E's port accessed, height & weight, taking blood, and a visit with the oncology team. After that, it's just a case of sitting, and waiting for E's turn.
Right as we were called, there was a group of people around the nurses' station. At its centre was a boy who may have been about 8. It was apparently his last day of treatment, because they were bringing out the bell, and they were preparing to do the end of treatment ceremony. I congratulated the family as we walked past them to Cujo's Room for the lumbar puncture. Waiting to bring E in to the procedure room, we were able to witness the ceremony. The boy rang the bell, and afterward, he smashed a whip cream pie in his dad's face. I clapped when the group broke out into applause, and my eyes welled up with happiness for that family. I was also thinking about how far we've come from E's diagnosis, and how much further we still have to go before E has his turn to ring the bell.
E's lumbar puncture was uneventful. As usual, it went well with no problems. He slept for most of the hour post-procedure where he is supposed to lie flat. He woke up maybe 5 minutes before the hour was up, so we kept him entertained with YouTube, and some milk to drink. The results from his blood also came back clear. No blasts. I was able to breathe a huge sigh of relief.
Since then, he continues to receive his daily oral chemotherapy, though he's starting to despise it. We dissolve the pills in water inside of syringe, and then squirt the solution into his mouth for him to drink. He used to tolerate it, but lately it takes one adult to hold him down, and another adult to try and hold his head still while administering the dose. It's my least favourite part of the day. He's also been in for bloodwork at the satellite clinic on July 25th, which came back fine. Yesterday, August 8th, was another trip to the satellite for more bloodwork, and a push of vincristine through his port. Yesterday also marked the start of steroid week, so we'll see what kind of baby roid rage happens this month. And that about wraps my July/August catch-up.
63) https://www.AboutKidsHealth.ca
There's quite a bit of information, and misinformation on the internet with regard to health. When your kids are sick, it's easy, and tempting to use a search engine to find answers. The problem though, is how do you sort through what's real, and what's fake? What's trustworthy, and what's untrustworthy? What's accurate, and what's sensationalized? The glut of data, and sometimes conflicting points of view can make it difficult to when you're presented with a child who may need medical attention. In case of emergency, always dial 911.
Toronto's SickKids hospital hosts a website called AboutKidsHealth. Their mission is to "improve the health and wellbeing of children in Canada and around the world by making accessible health care information available via the Internet."
What exactly is AboutKidsHealth? It's an online source of health care information that is approved by doctors and nurses at SickKids. The website is full of "reliable, evidence-based health information", and is available in a variety of languages.
Back in March 2018, AboutKidsHealth was redesigned, and the current version is more responsive, sports a cleaner look, and makes articles & information easier to find. It still appears to run on the Microsoft SharePoint platform, but I won't hold that against them.
When searching for health information about your kids, even for smaller things like colds, fever, or cuts & scrapes, https://www.aboutkidshealth.ca should be your starting point because: science.
Toronto's SickKids hospital hosts a website called AboutKidsHealth. Their mission is to "improve the health and wellbeing of children in Canada and around the world by making accessible health care information available via the Internet."
What exactly is AboutKidsHealth? It's an online source of health care information that is approved by doctors and nurses at SickKids. The website is full of "reliable, evidence-based health information", and is available in a variety of languages.
Back in March 2018, AboutKidsHealth was redesigned, and the current version is more responsive, sports a cleaner look, and makes articles & information easier to find. It still appears to run on the Microsoft SharePoint platform, but I won't hold that against them.
When searching for health information about your kids, even for smaller things like colds, fever, or cuts & scrapes, https://www.aboutkidshealth.ca should be your starting point because: science.
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