I am happy to report that our experience through this first week of receiving chemotherapy went as well as it could have. Zoe has been laying flat on her back for a week but, due to the groggy effect of the chemo, she doesn't seem to mind that she's tethered by no fewer than 9 wires and tubes to static machines that buzz and hum continuously. She's had nausea, pain, and no appetite, but most of the time her attitude is fantastic.
She has really enjoyed her magnetic alphabet letters, puffy stickers (they're much easier for her to manipulate than the typical flat stickers right now), storybooks, and brother Baby Cam. Camden seems to bring out Zoe's empathy and love in a way no one else does. She caresses his face and will look at me and say, "Ohhh. Cute baby!" Every peep out of Cam from anywhere in the room will elicit, "Cam? Baby?" Camden seems quite taken with his big sister, too, and my heart swells seeing the two of them look at each other.
Yesterday afternoon, Music Together descended upon the ICU as Michelle, Henry, Vicki, and Nolan visited Zoe. Henry was a patient at CHB as a newborn with a cyst on his brain. Nolan brought out his violin and Zoe gleefully called out, "Vio-een, Vio-een!" It had been over a week since Zoe had seen another child, and these boys, with their instruments and smiles, were exactly what Zoe needed after a tough few days. Vicki and Michelle gave us lots of gifts and a beautiful card signed with love by lots of Music Together families. They kept thanking us for their visit with Zoe, but it was definitely we who were blessed by their gifts of time and talent.
As you may remember, some of Zoe's autonomic functions were impacted by the surgery and excess cerebral-spinal fluid. She had difficulty regulating her heart rate, respiration rate, temperature, and urination. It seems that, since surgery seven weeks ago, her brain has healed enough to resume these functions. We will monitor her closely while she is off of the medicine that regulates her urine output and see if the brain can reliably control that. It is also quite apparent to us that her language skills are improving which helps us to more accurately evaluate her cognitive abilities. Before radiation begins next month, she will have a full neurocognitive evaluation and we will track that as she goes through treatment. We thank the Lord for her progress; it is very encouraging to watch her brain redevelop some functions, even while she battles with the brain fluid imbalance.
Zoe will be moved from the ICU to the neuro floor sometime today or tomorrow. If she needs an internal shunt surgery, that may happen before the end of the week and she'll stay another day or two after that, which practically brings us to next Wednesday which is her chemo clinic day either at Dana-Farber or CHB, depending on a few factors.
Please pray for us as we learn about Zoe's chemo regimen and how to best protect her when she is most vulnerable to develop infections or contract illnesses. (If you haven't received your flu shot, please visit us via Skype or phone, but if you have received your shot and you do visit us, please remember to wash your hands upon entering.)
It has been wonderful to have David's parents here for the past few weeks. They intend to begin their drive to Illinois tomorrow. I hope they know how incredibly helpful they have been as emotional and logistical supports. Becky is on her way back to us this Saturday for a few weeks which should bring us to the transition into radiation therapy. I still haven't found the words to convey how much I appreciate all of you holding us up in your own way. Whether you're here in person or sending us encouraging words from afar, we need all of you and praise the Lord for the different gifts and roles each of you so freely contribute.
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