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.

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.

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.

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.

2018-02-27

47) Bloodwork, bewilderment, blasts, and barfs (Interim Maintenance II)

The past week has been whirlwind. On Tuesday February 20th, we returned to our satellite hospital for scheduled bloodwork. The previous week, E had been neutropenic, and our trip to SickKids for a lumbar puncture had been pushed back a week. E's blood was great this week, so we were told to proceed to SickKids for a lumbar puncture. We would be starting Interim Maintenance II on Wednesday. I messaged my mother, and she hopped on a GO train to come out and help. On days where we have a lumbar puncture and we need to get E down to SickKids early, my mother or my mother-in-law will sleep over so they can get J off to daycare and we can get a jump on the traffic.

E riding the halls of Rouge Valley Centenary
Wednesday February 21st, we ended up not waking up as early as I had liked, and we were a little late getting on the road. Combined with the pouring rain, it was a miserable 90 minute trip to downtown Toronto. E's lumbar puncture & chemotherapy went without incident, but he woke up after only 30 minutes, so my wife had to lie on the stretcher with him to try and keep him horizontal until an hour was up. Cancer patients need to lie flat for an hour after a lumbar puncture so that the chemotherapy is effective, and also so they don't get a headache.

E riding the halls of SickKids
Around lunchtime on Thursday February 22nd, the phone rang. I was on the computer, and my wife answered the phone in the kitchen. I wasn't listening in, but I overheard her say "I'm not sure what you're telling me. Should I be worried?" I then focused in on the one side of the conversation I could hear, but most of it was my wife repeating affirmative words: yes, uh-huh, okay. I didn't know what was going on, but I started having a panic attack. I felt a sense of vertigo, my vision went wonky, and my ears felt like they filled with blood. I could still hear sounds, but it felt as though I was listening underwater. I was transported back through time to July 22nd, E's diagnosis day. I felt like I wanted to vomit.

We've all had a few minor medical issues as of late. At first, I thought the call was about my wife. Immediate panic. If something is wrong with her, I can't do this all on my own. Somehow, I came to the realization that whomever was on the other end of that phone was talking to her about one of our sons. We had some bloodwork done for J recently, and we found out that he is anemic. Not surprising because the kid literally doesn't eat. I was panicking, thinking that they were calling because they found something else in his blood. Maybe J had leukemia too. Maybe it was something else. After what seemed like an eternity, but was actually at most a few minutes, my wife got off the phone. She told me that it was E's oncologist from SickKids, and that they had spun his blood after the lumbar puncture, and they had found a few blasts. My heart immediately sunk. The oncologist had said not to worry, that they see this from time to time, and it was definitely not a relapse. At E's next lumbar puncture they will take more blood, and check it again. Our oncologist said that when this has happened before with other patients, the blasts are usually gone by the next test. The good thing is that he has chemotherapy drugs in him after a break of a couple of weeks. There is nothing to do, and nothing we can do right now since the oncologist doesn't want to have to put him under anesthetic again.

It's been stressful, but we're trying to remain positive. They don't mess around with oncology patients. If the doctors are concerned about something, they tell you to go to your satellite, or come in to SickKids. SickKids is, if not the best, then one of the best children's hospitals in the world. If they're not panicking over this, and telling us to come in to the hospital ASAP, then it will hopefully turn out to be nothing. A Facebook leukemia support group that had I joined provided some answers, with one parent stating:
"It can happen when they're neutropenic. The bone marrow is trying to push out any cells they can to help their body recover and in the process they push out Young blood cells that aren't fully formed. Blasts are "forming cells" Don't freak out. I know it's terrifying though."
E had been neutropenic the week before, so this answer did quite a bit to soothe my anxiety. However, I am a worry machine, and it's one of the things I do best. We'll just have to wait until the next lumbar puncture, but the waiting is the hardest part.

On Friday February 23rd, and Saturday February 24th, we had our first two nausea induced vomits. I guess we've been lucky so far, in that E has been pretty good about not losing his appetite during chemotherapy. He has vomited during treatment before this, but those vomits were directly related to his sensitive gag reflex issue that we are still trying to work through. This time, there was no gagging or choking. His lunch went in, then for no apparent reason at all, it came right back out again like a science fair baking soda volcano. We have a prescription for an anti-nausea medication named ondansetron (I laughed when I firs heard the name, because I thought it sounds like the name of a Transformer), but we usually only give him the meds for 24 hours after a chemo treatment. It's difficult with E being only 22 months, since he doesn't have the words to communicate to us of how he feels. Everything we do is guesswork; our interpretation of how we think he's feeling. I gave him a dose of ondansetron, put him in the bath, and then he was able to keep down a bottle of milk. Solids later in the day were kept down no problem. E must have been feeling better later on, because he was running around playing (fighting?) with his brother.

E & J, mesmerized by PAW Patrol
Overall, I'm happy that Delayed Intensification I & II are over. I have a number of questions for E's medical team about the presence of the blasts. We've been told to not worry, so I'll just have to try to keep that thought front and centre.

2018-02-21

46) The Williams Toy Drive, Brandon Cook's Holiday Toy Drive, and other thanks


First off, I'd like to write my appreciation for the Ronald McDonald House room located on the pediatric floor of Scarborough Centenary. They offer snacks, food, water, coffee/tea, shower rooms, and sleep rooms. Ronald McDonald House is a great charity that helps many parents who have sick children, so please support them on May 2nd 2018 for McHappy Day, or consider them if you are making any charitable donations. I would also like to thank all of the doctors, nurses, and staff in pediatrics at Scarborough Centenary for taking such great care of us during our hospital stay. Days, nights, weekdays, weekends, holidays. Medical staff are caring, selfless people who are devoted to caring for us in our worst moments when we are ill, and I cannot say enough good things about them.

I'd like to take this time to recognize The Williams Toy Drive (Facebook), and Canadian super welterweight boxer Brandon "Bad Boy" Cook's Holiday Toy Drive (Facebook, Twitter, Instagram, Web), and everyone involved in both toy drives.

The Williams Family has been doing toy drives for 8 years, and this was their 4th year supporting Scarborough Centenary. The Williams family has also supported WINGS maternity home, the Red Door women's shelter, and Toy Mountain.

Brandon Cook has been doing toy drives for 4 years, and this was his 1st year supporting Scarborough Centenary. Brandon Cook's Holiday Toy Drive has also supported SickKids, the Salvation Army, and Durham Regional Police.

Christmas Eve fell on a Sunday in 2017. That morning, I was surprised by appearance of our POGO Satellite Clinic nurse-practitioners. For one, it was Christmas Eve, and for two, it was a Sunday, and the clinic is only open Monday to Friday. They told me that they had arrived because they were receiving a big toy drop, and I didn't really think anything more about it. Maybe half an hour later, nurse-practitioner L popped her head in our room, and asked me if I wanted to bring E to the floor reception desk, because the group of people who had donated presents were actually here to give toys to all of the kids who were in the hospital over Christmas. My wife was still at home, so nurse-practitioner L helped me with E's IV pole while I pushed him in his stroller.

At the reception desk, there were a couple of carts full of toys, from teddy bears, to My Little Pony, to trucks, to Star Wars figures, to mini hockey sets, and more! We were encouraged to have a look, and pick whatever we thought our child would like. I felt a bit hesitant and awkward rummaging through everything, but I was looking it all, taking it in. Before long, Brandon Cook walked over to where I was standing with E, and he had an armload of toys. He was asking me what E liked, and was showing a few different things to him. A particular gift, a set of 6 little trucks, had him grinning ear to ear, so we knew that was the one!

I spoke to both Brandon Cook, and Byron Williams to thank them and their supporters for their wonderful generosity, and to let them know how much I appreciated the fact that their kindness had put such a big smile on my little E's face.

All smiles near the reception desk after The Williams Toy Drive & Brandon Cook's Holiday Toy Drive delivered gifts.
Brandon Cook and his recently-won junior-middleweight IBA Intercontinental Title
When everything wrapped up in the reception area, E and I returned to our room. I sent a quick message to my wife, and our families to let them know what had just happened, and then I lost it for a couple of minutes. I took in the gravity of what had just transpired, and cried some (mostly) happy tears. I've never really been on the receiving end of charity before this, and it hit me at that exact moment: we were that family. The family who has a child with a critical illness. The family who are in the hospital over Christmas. Complete strangers had gone out of their way and spent their hard earned money on a gift that ended up in the hands of my son. That gift put such a big smile on his face. I was overwhelmed by incredible generosity of all those involved with these two toy drives. Even now, almost 2 months later, as I finally put the wraps on this long simmering post, I still remember the way E's face lit up when he saw the trucks.