Memories

Good evening everyone,

Tonight, Zoe sat down to dinner, said her super cute, “dank YOU!”, put her hands to her head in reverence, listened to my prayer, and said, “Amen.” When she was finished eating her slice of Amy’s pepperoni pizza, she asked for another slice and was thrilled when I delivered it. She right now is reading a book with Grandpa. These are the last moments before she begins her chemotherapy treatment tomorrow. It pains me that we were not able to videotape these moments, but I don’t have a full time videographer here and I’m engaged in the work of raising Zoe and running the household. David and I are already surprised how hard it is to remember Zoe as she used to be, and I grieve knowing that I’ll probably find it hard to recall the beautiful moments of this night as they get lost in the work of tracking Zoe’s fluid ins and outs, talking with one doctor after another, fending off night nurses so Zoe can sleep, and navigating Boston traffic morning and night.

Last night, we listened to Zoe breathe as she slept between us. It’ll be a while before we’re back in our own beds again. It’ll be a while before we function as a family, rather than as a medical machine. Everytime David and I switch shifts, we’ll exchange reports on which medications Zoe received that day, when was the last time her diaper was changed (she needs them changed every two hours so her bladder isn’t being quietly eaten away by the chemotherapy drugs; Zoe’s Diabetes Insipidus will need careful management in this respect which means constant monitoring on a number of levels), what which doctor said and why, which procedures she has coming up and any preparations and considerations before then, and all the other details of this life.

Wonderful, thoughtful friends and family have generously offered their time and resources, but with the spontaneous nature of our complex little Zoe, it’s been difficult to arrange for support. Procedures have been rescheduled or cancelled or added (tomorrow’s surgeries, for instance). 2.5 hour appointments have turned into 9 hour days (today, for instance). Thankfully, Cam has Grammie and Mom and Dad as ever-ready companions.

We are considering living in Boston for weeks at a time, so this may be an area where one of you, or someone you know, could help us. This is the scoop:
The first 20 weeks or so of Zoe’s protocol (depending on postponed infusions, complications, added surgeries, etc) are the most intense and we will need to be at the hospital a great deal and, sometimes, at the hospital in a hurry due specifically to both the diabetes insipidus condition, which can become critical due to the common chemo side effects of nausea and appetite suppression that can alter Zoe’s electrolyte balance, and due to issues caused by fluid in the brain. (The amount of fluid in her brain has increased even from one month ago according to last Friday’s MRI. This can become quite problematic.) Well, with an infant to consider, as well as commuter traffic and inclement weather (today, Route 1 was closed due to flood!!), the safest place for our family to be is Boston. I have researched Children’s Hospital Patient Family Housing and have yet to find a suitable solution for us (spaces are booked, too expensive, or too inconvenient). We would ideally need a place either on the first floor or a place with an elevator since neither of our children is able to walk. We would need a place where we would have safe access to both a bathroom and sleeping area without lugging our children from one place to the other for their safety (such as with the Ronald McDonald House and the Yawkey Family Inn which do not have rooms with bathrooms connected to them). We have a support person with us from now through much of November (my mother, Becky, and Diane, at different times) who would stay with Cam at the Boston residence so that we can raise Cam while caring for Zoe. If any of you know of a place that would be suitable, please send us the contact information and related details as soon as possible.

I’m off to nurse Cam and pack for our hospital stay. Look for an upcoming email blast with the blog address to Zoe Means Life, our journal.

Catherine