A Big Year- 2014

First, an update on Lucy. This year has proved much more active and happy than last. She hiked, gardened, played and went to the beach with her brothers, slept away at Camp Merrimac for Girls, and had many fun times with her friends baking and crafting. 

Our biggest news is that her MRIs continue to show a shrinking tumor!!

In other ways, she is improving as well. The teams of people addressing the chronic pain (Neurologist, Pain Specialists, Psychologist, Gastroenterologist, Physical therapists, and others) have helped her to make progress against it. Though daily headaches and other complications persist, her functionality and quality of life have improved remarkably.  She has been able to stay at school almost every day and excel academically. She was able to initiate growth hormone therapy, and has grown several inches. Her partial peripheral vision loss is permanent, but her sight is 20/20, which is incredible for a craniopharyngioma patient. She has such an eye for beauty and design, sharpened by her awareness of what she escaped. This winter she'll have her chest port removed, a long-awaited sign of health!

The tumor left her body devastated in many ways, and we long for sustained and increased healing from the aftermath. But it's been a year full of gifts.

As for the boys, they have spent the year running, wrestling, reading, making movies, making music, playing soccer and building in our garage design lab. They all adore their respective schools (yes we have four different ones this year), an incalculable blessing. Richard is enjoying his diverse responsibilities as Emory Med School faculty, and Caroline is happily writing a lot.  

Thank you for loving our family!

Thankful for 2013!

Lucy had a full year: cooking, reading, enjoying her cousins (2 of them new!), turning 8, spending a week at Rosemary Beach for her Make-A-Wish trip, being a flower girl, rocking 3rd grade at a new school, having fun with her brothers and playing with many new friends. 

Medically, it was a difficult year.  She struggled with constant pain and fatigue from her fall surgeries through April. She had eye surgery in the spring which was successful, but also painful to recover from.  Her summer was more active, though her GI discomfort and headaches continued to disrupt through the fall.  In September we received incredible news-- her MRI showed complete stability of the tumor one year out from surgery! We began the long-awaited growth hormone, but unfortunately, we had to stop it due to intensified headaches, which often disrupted her schoolday in addition to her back and stomach pain. 

The good news: no growing tumor!! We are also very happy about all the resources we have available to help her now, including a neurologist who found a headache medicine and dose that finally is beginning to help, a holistic physical therapy team specializing in chronic pain, and a pediatric pain management physician.  We hope to re-start the growth hormone soon, and feel hopeful 2014 will be a brighter, freer year for our brave, smart girl.

Thank you, dear friends, for each day you remember Lucy in your thoughts and prayers! 

Here are some pictures of her year.

Inconclusively Positive?

This week Lucy spent a morning at her comprehensive check-up.  Greeted cheerfully by name, she saw her nurses, psychologists, endocrinologists, radiologists, radiation oncologists and neuro-oncologists all in one office.  Aflac Cancer Center has made all the difference in our experience of this disease.  She left with a big hug from her primary physician, the wonderful Anna Janss.
When all of these people, with the addition of her neurosurgeons, sat down to discuss the latest MRI, they came to the usual conclusion:  let's see what the next one looks like.  There is a cyst present that seems larger, but because it is not the same shape as the tumor cyst, several doctors on her "tumor board"suspect that she may actually have fluid buildup from surgery and not from growing cells.  As has been the case for 4 years, she will have another scan in 3 months, and we will go from there.
Lucy is thinking of the present moment however-- she can't wait for her Christmas week to start Monday full of grandparents, cousins, aunts and uncles! And treats and fun! And maybe those gold sparkle boots from Santa!

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.