No Word Yet on MRI

But Lucy did an amazing job remaining calm for her first fully awake hour strapped inside the machine. (She did the scan awake when she was in the PICU post-surgery, but had lots of morphine on board to help.) She was so still that not one image (out of the hundreds taken!) needed repeating. Thankfully she could watch a video inside her helmet, and hear the voices of the the technicians speaking to her. Her neuro-oncologist will call us soon with the scan reading, and we will go for an in-person clinic visit in a couple of weeks. Grateful for all of you who care enough to still keep up with us!

We like this old hymn's language as a simple prayer for her:

Cover my defenseless head with the shadow of Thy wing...

Progress Report and Upcoming Dates

Lucy has enjoyed returning to school, art class, and everywhere else she can accomplish a creative task, have a crazy playtime or enjoy a cozy chat.  The further out she gets from the hospital, the more outgoing and confident she seems.  The last two weeks she has had mild headaches, but so have I, so we hope it's just part of the autumn cold our family is passing around.  Her first real post-surgery MRI is next Tuesday, November 27th, and we will post results here.  Her outpatient surgery for her wandering eye is scheduled for March.  

Sometimes art is the only means of expressing our honest situation, so I close with poetry:

...sometimes the camera pauses while a family
counts itself, and all of them are alive,
their mouths dry caves of wordlessness...
a craziness we have so far no name for--
(Mary Oliver)

Grateful for an uneventful week

Full week at home without symptoms-new record!

Lucy is still safe. She has been resting on the couch all week besides a few brief outings, and very conscientious about her rules: not straining to do anything, not bending from the waist, not jumping or running. Nausea and headache show up every so often, but every day she feels more like herself. She works hard on her schoolwork despite her lack of stamina.
She did have a setback Monday that involved a painful restitching of her previous drain site in her back, which had continued to ooze csf, but she talks through her emotions with clarity and insight, which helps her move on in a healthy way. She is sleeping great, her moods have stabilized, and she does not seem burdened with the anxiety her parents suffer.
She will take another week off school and other activities, though the ENT indicated she could drink through a straw today, cause for great celebration. 5 weeks is too long for such a major restriction!
We love all of you-- so grateful for the ways you continue alongside us when it would be logical to feel Pittman-fatigue.
We will keep you updated on the next few weeks, which will involve some follow up procedures and MRI.

Home again, home again

Happy to report that Lucy came home today!  She had the lumbar drain in for 10 days without incident, and yesterday when they clamped her drain she had no leakage. Her doctors felt that she had waited long enough and pulled the drain this morning.

Jack and Garrick came to fetch her dressed up as secret service men in corduroy pants and madras shirts.  No doubt this will initiate a change in the real secret service uniform...

Balloon greetings, posters, and jumping boys welcomed Lu back into her noisy home.  She propped herself on the couch all day; we intend to keep her that way for about two weeks.

Rain Forest in 5243

Richard and Lucy decorated the room this week with Carle-inspired cut-outs!

Today's news:  Lucy's drain will be clamped tomorrow, and she will go home Saturday if all goes well.  If she leaks at any time before or after she goes home, the plan is for temporary internal shunt placement, which would route her CSF to her stomach for a couple of months, buying even more time for her brain to close on its own.  After that, persistent leaking would necessitate another open craniotomy as the sole remaining solution.

We hate the thieving disease that presses us behind and before, but this myopia does produce a full awareness in us of the present moment.  As Jim Elliot said, we are "all here"-- a rare gift.

Angels in the wilderness

Here are just a few of Lucy's this weekend. She has minimal pain,and lots of activities to keep her busy in bed. Recent accomplishments include a Lego helicopter and a bunch of schoolwork!