57) One full mini-cycle

We've completed one full mini-cycle of maintenance. A mini-cycle is 28 days, and there are 3 mini-cycles that make up one full Maintenance cycle which is 12 weeks long, or 84 days. E's cycles and mini-cycles start on Wednesdays, usually around the middle of the month.

Day 1 is a trip to SickKids for a lumbar puncture, a dose of methotrexate injected into his spinal fluid, and a push of vincristine. Day 1 is only a trip to SickKids every 3 months, meaning we go on the first day of Months 1, 4, 7, 10, etc. Otherwise we only go as far as Scarborough Centenary for a vincristine push.

Days 1 through 5 are also days where he receives steroids. The dose is administered at home. E usually isn't too bad for the first couple of days when he is on steroids. Days 3 to 5, & for couple of days after when he is getting the steroids out of his system, are pretty awful.

Days 1, 8, 15, and 22 are days when he receives 4 methotrexate tablets. If Day 1 is also a trip to SickKids, then we skip the methotrexate pills for that week because it is delivered intrathecally. Because he is so young, the tablets are dissolved in water. The dose is administered at home. The dissolved tablets turn the water yellow, and apparently taste quite awful. I'm inclined to believe it the way that two grown adults are needed to hold him down to squirt the syringe of liquid down his throat. Methotrexate day has to be one of my least favourite days.

Day 15 is also a hospital visit, but we only have to go as far as Scarborough Centenary, and he only needs to have bloodwork done.

E receives a mercaptopurine dose every day. Also known as 6MP, he receives a full tablet on Mondays, Wednesdays, and Fridays, and a half table on Tuesday, Thursdays, Saturdays, and Sundays. Again, because of his young age, the tablets are dissolved in water. It is also another drug that is administered at home. The tablets dissolve into flakes, and apparently don't have any taste. We usually don't have too many problems getting him to drink his "water" from the syringe.

E still needs his daily dose of Vitamin D, and also receives a dose of Septra at breakfast & dinner on Fridays, Saturdays, and Sundays.

Confused? Yeah, so am I. That's why the pharmacy department at SickKids gives out a medication calendar so you can check to see what medications need to be given on which days. It's a printout that we stick to the fridge with a magnet, and put a small checkmark next to medications after they're given. It's analog & low tech, but it works for us. I'm sure there's apps out there that could be installed on our phones that would ding & chirp with reminder alarms, but this has been working for us so far, so I don't really want to change it up.