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.

53) When will it be Spring? (At long last)

Flurries, and blowing snow looking south toward Lake Ontario - April 17, 2018.

Flurries, and blowing snow looking north - April 17, 2018.

Book found in Pediatrics with quite the poignant title

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!

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.