January 18th, 2017 (Scott)

For the first time in a while Maya had a solid night’s sleep that didn’t end with nausea and vomit at 6 am. She woke up feeling good having missed her first dose of oral chemo in 3 months. Her appetite remains strong, and her desire to get off the couch and back into play and activity grew by the hour. Even her sense of humor and wonderment started to re-emerge.

All of this is what we needed to see–at least it affirmed the decision we’d made to hold chemo therapy for a week. We’ve faced hard decisions all along, but it seems like we’ve always found our comfort zone and moved forward with confidence. In this one we know we’ve split off from the main stream of the treatment protocol and created a new path–probably not far off from the old one, and likely arriving in the same place… Probably…. Likely…. And there’s my problem.

You can only treat so much. Maybe successful chemo therapy is really a partnership between strength and poison. When the balance strays too far from center, there is a choice to reset the system. Dr. Zucker said, “It’s my job to break her down–it’s how we save her life… But I don’t want to actually ‘break’ her.”

This week is our reset–our new path begins with 7 chemo-less days, and it’s our job to ensure every one of them is a effective as it can be–to help restore Maya’s strength, flush out the toxins, and set her up to jump back into the fray with full Dragon-force.

I guess we never know with decisions like this or any of the others along the way… Get her to the doctor, get the blood tested, drive to Oakland, grit your teeth and hang on with every ounce of strength. We trust our team, we trust our instincts, and we trust Maya to show us what she needs. We gathered all the info we could, used care and counsel, and we did not hesitate. I suppose in the absence of immediate results we may rely on our process as evidence that we did the right thing. There is only to go forward on our path and do all we can to make it the right one.

In one week phase 2 of maintenance will start. 5 days of steroids (joy!), infusion of vincristine, oral methotrexate, lumbar puncture, and a return to 6mp. Right back into the eye of the storm and hoping to find that peaceful balance.

Thank you for your love and strength. Together we’ll get the balance back and our little Dragon centered again ready for the next challenge.