Mercaptopurine (6-MP)

Mercaptopurine (click for more info) is one of the cornerstones of treatment for Acute Lymphoblastic Leukemia in children. Jaxon started taking it during the 28 days of Consolidation, the second month of frontline treatment (May 15 - June 11/14), then not again until he began long-term maintenance in December 2014. He took it nearly every day for the next 900 or so, only skipping about 12 doses due to low counts. 

For the majority of his treatment, he was required to take 6-MP on an empty stomach. It was generally believed by most of the VIPs of childhood cancer treatment that food, especially dairy and citrus, interfered with the absorption of 6-MP, thus jeopardizing its efficacy. This was manageable during Consolidation as I would just wake him up at around midnight, give the meds, and back to sleep he went. 

During LTM, when he had 5 days of steroids and about 5 days of steroids-hangover, it became much more difficult. With unstable emotions, difficulty making decisions, trouble falling asleep, ever-changing food cravings and aversions ... it was really hard to maintain a dose of meds given on an empty stomach. It was a big ask to send the boy to bed hungry when he had spent the whole day not sure of what he wanted to eat and then he FINALLY made a decision. Saying no because it was almost medicine time was just not going to fly. He was supposed to take the 6-MP at as close the same time of day as possible. All that to say, I spent 2.5 years rousing him from his sleep 2 hours after his last bite to eat, just enough to give the meds, and making sure he swallowed fully before laying back down to sleep. I think we might have switched between giving it in the morning and the evening, but for the most part it was done around midnight. That was also encouraged because of the nausea that often came along with the dose. Sleeping it off was better than toughing through it in the morning.

As with the Dex, we started with liquid 6-MP. We only did that for the first round of it in Consolidation. Again, the volume of it plus something to mask it (we used a touch of chocolate syrup during Consolidation) was just too much. We learned that the tablets were easily dissolved in just a tiny bit of warm water, so we changed tactic once he started LTM.

Medicine box during Consolidation.

This photo and all the ones below were taken during the last week of oral chemo!
On Thursdays he also took a dose of oral methotrexate, except for the 1st week
of every 85-day cycle when he received MTX into his spine via an LP.

I was supposed to wear gloves and a mask even just to open the bottle of 6-MP. I did not comply. Parents of kids on chemo who wear diapers are supposed to wear gloves to change them. :( I got very good at pouring the pills from the bottle to the daily box, then from the box into a 5ml syringe. I would pull about 3ml warm water from a tiny glass that I used only for that purpose. I'd cap the syringe and shake it until the pills dissolved. Carefully remove the cap so it didn't splash, remove all the air, pull a tiny bit of Mio water flavouring (orange only! to mask the taste), replace cap and shake again. If you've ever seen one of those little water flavouring bottles you can probably imagine why it worked so well. All without touching any! I could even get them split in half (he took 1.5 pills for a long time) without touching anything. The pill splitter and box went to the biohazard garbage at the hospital when we were done with them.

Label removed, clearly marked with warnings, and kept tucked away in the medicine box.

We called it "drinky medicine".
(Never to be confused with "sleepy medicine"!)
I would carefully remove the cap and he'd suck it up.
By the end of treatment, he was a total pro.
But still, to this day, he will not swallow a pill.
Lots of kids, even really little ones, can swallow their pills with no problem.

Just a few months before his end of treatment date, the powers that be decided that there was no clear advantage to taking 6-MP on an empty stomach. "The Moms" (our oncologist worked really hard not to roll her eyes when I mentioned "The Moms" from an online support group I'm a part of) had been talking and swapping stories for months about how some hospitals lifted the food restrictions around 6-MP while others had not. Every month I'd ask her if she'd heard anything official, and every month it was ... "not yet".  It was such a relief when we finally got the go-ahead to take the 6-MP with food. What a difference it would have made for the previous 800+ doses. We're so glad that new patients don't have to experience that part of it.

This was the penultimate dose.
There was always a bit of residual medicine in the syringe so we always
pulled two extra syringes worth of the warm water in to get it all out.
Syringes went into a biohazard box that we returned to clinic when it was full.
I felt awful with the amount of syringes we went through, but it was just what worked for us. 

Sunday June 11, 2017 was a great day for dinner at friends-who-are-family's house.
They got to celebrate his last dose of chemo with us. It was pretty exciting.
He swigged it back and rode off into the sunset on a borrowed bike, and no helmet.

These friends ... there with us through it all! 

That's our story about mercaptopurine.