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.