Mar 9, 2016 (Scott)
I can’t help but look forward to next week’s trip to Oakland. It marks the end of induction, and more importantly the end to 28 days of twice daily Decadron (steroid).
Our day to day activity is focused on dealing with the side effects of this drug therapy. Maya’s appetite is huge and, even at 230am, is insistent. Last night she ate two helpings of leftovers at 10pm, woke up at midnight for a snack, then woke at 530am for an hour-long meal that included trail mix, chips and salsa, pasta, rice, and pickles.
The effects of the steroid are cumulative, and in the past 10 to 14 days we’ve seen the visible ones increase quickly–moon face, distended belly, overall weight gain. This is all within the range of ‘normal’ for this drug over this length of time. Knowing that it’s normal and that there’s a good chance she’ll be reversing these changes over the next few weeks keeps us calm, but weathering a steroid induced fit in the wee hours of the morning caused by the fact that we’ve run out of crackers is so much harder when you struggle to recognize your own daughter’s face under swollen cheeks and eyes.
Sensitive emotions and mood swings are also well within the normal range. We still push Maya to be polite and ask properly for things she wants–but she get to have most anything she asks for. She’s can be upset to the point of tears pretty easily–for example if Pelei (our dog) decides to slyly adopt one of Maya’s new stuffed animals. What’s interesting over the past bunch of days is that Maya appears to be understanding and working to control some of these over-sensitivities on her own. Through all these weeks of uncertainty and numerous toxins flooding her veins, she’s finding her own way to adapt and embrace the life going on around her.
Today Pat (Sara’s Dad (and cape-less superhero)) and I spent the day with Maya and Linco while Sara was at work. As we alternated between cleaning and food preparation through the day, we watched Maya push away from listlessly resting on the couch and begin engaging in play time, stories, conversation, and creativity. She looks pretty rough around the edges, puffy and bruised and slow moving, and I can’t imagine she feels very energetic, but her desire to make the most of a day at home with her Grandpa and little brother couldn’t be held back. She spent time in the toyroom playing with Lincoln and reading books with Grandpa; she reclined on the couch with Pat and me and made conversation and told silly stories; she even began wandering around and exploring for new things to do.
Consciously or not, Maya is determined to live and enjoy her life whenever she can. She’s not waiting for her belly to shrink or her swelling to subside. She knows we’re heading back to Oakland in a few days, and despite our hopes, none of us know exactly what course that visit will set us on. I know Sara and I both struggle with the desire to fast forward this difficult stretch of time, to get nearer to health and real life. But we also know that there is living to do right now. Lincoln and Maya are growing up–they’re playing and laughing and bonding more each day. I realized today that for Maya, the path of least resistance is to embrace the love, to engage in the life around her despite all the rest. I’ve been wearing an orange wristband that says ‘strength’ as a reminder for myself–I’m so thankful that Maya doesn’t seem to need one.
Motherly assessment (Feat. Father)… On Tuesday Maya’s ANC had jumped up to 280. This was a nice surprise since the previous Friday it was 12. This needs to be north of 500 for her immune system to offer any real protection, but I think it gives some indication that she’s responding. Her platelets had dropped from 149 (after the previous week’s infusion) to 92. Platelets only last about a week, so this indicates that she must be making some of her own–also very good news. Her hemoglobin was 9.6 which was about the same as Friday. Overall, this seems very positive–more positive still is the fact that we didn’t see any negatives. Sara and I are cautiously optimistic knowing that there is much uncertainty just ahead. We thank you all for your comments, thoughts, prayers, support, love… we’re reminded often that we are not alone, and daily that reinforces our strength, hope, and faith.