David has prepared a video of Zoe that we intend to post on the site, so stay tuned. Oh, and I've put a few more photos in the Photos section of the blog, so feel free to visit.
Thank you to everyone who has been praying for us, feeding us, sending us encouraging notes and scripture verses, and gifts. We must have 8 prayer shawls now - imagine all that time in prayer!
Cycle 7 consisted of one dose of Dactinomycin administered at MGH on clinic day, and five doses of temozolomide, one per day, through Zoe's g-tube. Zoe was given Decadron, Benedryl, Aprepitant, and Zofran as anti-emetics and they worked - she didn't throw up once! We expect that this week, her counts will drop, but perhaps, like last cycle, she will not need to be hospitalized or need a transfusion. We will see.
Zoe's time asleep has increased, likely due to the late effects of her treatment, but when she is awake, she is wonderfully engaged. She has mastered the alphabet in both receptive sign language and reading letters, and is quickly learning shapes, colors, numbers, and the concept of plural (pronouns, possessives, and processing choices are still very difficult). Every single day I thank God for letting me watch this miracle happen right before my eyes. He is healing her mind right in front of us! We celebrate with her with every new discovery.
Two months ago, I couldn't get over how much psychological healing had transpired in Zoe's spirit. She had had a great many traumatic experiences and had developed a few unfortunate behaviors to help her cope, but then we watched most of those issues recede rather rapidly starting in January (The nurses, and my friend Rachael, will be happy to know that Zoe no longer holds onto a given banana for hours on end). This month, I can't get over how hungry and capable her mind is compared to her abilities a few months ago. Next month, I expect to be in awe at the rate at which her physical faculties are developing.
It may be difficult for some of you to understand what it means to have a child, or be someone, who has very limited physical strength and coordination. Yesterday was the first day in months that Zoe adjusted her blanket. Typically, Zoe lays still, just as we positioned her, but for the use of her left arm and hand. She doesn't adjust her head on the pillow. She doesn't roll over. All night. With daily exercises, physical/occupational/music therapies, and eliminating certain chemotherapy drugs that impede her neurology, her faculties are returning. She is now able to sit upright in a chair for about an hour. More and more, she is using her right arm and leg to accomplish both her own goals (peeling bananas, adjusting her hat, pushing us away from her, etc) and those we set for her (stomping her feet in rhythm with a song, range of motion exercises with her right arm, clasping puzzle knobs with her fingers, etc).
We fully expect that someday this child will walk again and, with that independence, every aspect of her life, and ours, will change.
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