Jun 18, 2016 12:03am (Scott)
The first day of delayed intensification has been eerily smooth. Maybe that’s a result of preparing for the worst, or maybe Maya’s strength has made things easier on her parents once again.
Maya’s labs this morning were strong: ANC 1060, HGB 12.3, WBC 3.6, Platelets 276. She’s been sleeping much better over the past week or so, and Sara and I were very glad to see she was in a great mood and excited to visit her friends (nurses, doctors, staff, other kids) at the clinic. Accessing her port was a little more dramatic than usual; she put up a bit of protest probably because we hadn’t been through it in a couple weeks, but I reminded her there were two ways things could go, and she chose the one where she maintained more control–little more strong than calm this morning, but we’ll take it.
After a few hours at the clinic which included intrathecal methotrexate, IV vincristine, IV doxorubicin, and a giant butterfly-shaped cookie with green icing, we headed home to restock the home pharmacy and finalize our schedule of meds. Aside from a little extra loopy 3-year old behavior and some restlessness in the afternoon, things seem close to normal. We expect the acute effects of the doxo, aka red devil (see infusion picture), to show up anytime: nausea, hair loss, mouth sores. The effects on blood counts start to show at 10 to 14 days after the dose. At that point we’ll see Maya’s numbers sink back near zero.
In preparation for our return to a neutropenic lifestyle, we’ve gotten to work sterilizing the house and transitioning away from using the evaporative cooler. Being outside on a windy day can be dangerous with an ANC below 750, so pumping outside air through a swamp cooler to stay comfortable in summer isn’t a great idea. We’re very happy to say our house now sports a brand new AC system with UV air filtration. We’d like to thank Troy, Brandon, Mike, and the other guys at RHP Mechanical Systems who adjusted their schedules and diligently worked to get things installed so Maya wouldn’t have to suffer even a minute of hot temperatures in her bubble-home for the next 8 to 10 weeks.
Thank you to everyone for your continued care and support. Because of you we’re as strong as can be leading into Maya’s toughest phase of treatment. The tireless caregivers, timely meals, help with chores and maintenance, support from coworkers, kind comments, thoughts and prayers… the outpouring of love and energy both humbles and sustains us. In a time when every news story seems full with unsettling chaos, infantile squabbles, and persistent pain, I can tell you there is also an undeniable, unshakable foundation of goodness, care, and love in this world. It’s what gives Maya the opportunity to float above the panicked dichotomy–anger or fear… instead she’s empowered to seek other avenues, to be strong or calm or even to be both at the same time. We will get through this together.
(Below is a pic of Maya with her cousin Emma)