Jul 6, 2016 11:03pm (Scott)
There’s no doubt this phase is tough. Three doses of the red devil seven days apart compounding their effects with a chaser of steroids and a few other drugs that play quieter supporting roles, and this adds up to one pretty shitty week for a three year old. Her belly is starting to protrude again, there are issues with constipation, there is intense hunger, and her moods are delicate. Sleep is fleeting and interrupted by everything in the previous sentence. But here’s the good news… tomorrow is our last day of steroids for a while and will lead us into a week long break from chemo. In this phase we’re thankful for Netflix and tortillas and popcorn and air conditioning. And I’m thankful for the enduring toughness of this three year old little dragon girl whose spirit powers through it all. She makes this phase look like a garden variety belly ache, and I am in awe.
Maya makes things easy on us–takes her meds without fighting or complaining and tells us what she needs and how she feels when we’re concerned. But this phase is hard on Sara and me. I spent today at home with Maya and Lincoln (supported also by an awesome force of nature known as Grandma Bella), and watched her minute to minute efforts to power through discomfort, restlessness, and frustration. I carried her around a fair amount as her legs have lost some strength, and I pulled bunches of her hair off my shoulders after. There are more hurdles ahead–making counts to move on and a trip to Oakland for a few nights for observation and a slow infusion of more drugs. But there is light there too, just ahead and growing. We’ll soon clear the end of DI and revisit the smooth sailing of interim maintenance II. Then it’s preparation for the long, repetitious maintenance phase and the ringing of bells.
We are so thankful for the caring support, and the endurance of all who’ve continued to bolster our spirits and cheer our progress. Thank you to Linda, Dre, and Everyone at the WNC CDC for the continued fundraising efforts; thank you to Marian, Frank, and the Carson City Elks Lodge #2177 and friends for the generous donations, warm thoughts, and a beautiful quilt; thank you to Cousin Mikey for the talent and love infused in the bonfire funds t-shirts (available only until July 11th).
I’ve told Maya at least twice today that there’s just one more day of steroids, and then she can start to feel more normal again–she always nods in trust and understanding as she breathes through the weird jitters and twitches that highlight the steroid’s ever increasing list of side effects. Just one more day–two more doses and you’re done… and I’m certain she’s not the one in that conversation who really needs the reassurance.
We’re getting there. This is a necessary part of the journey. And we are so thankful for your thoughts and prayers and kind words.