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.

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!

Good signs day 4/10

We are happy that Lucy is settling into her routine for this session in the hospital.  

The weather has been encouraging, and Lucy likes going down into the children's garden for a quick walk.  She is so independent that she won't allow certain people to push the pole for her.  

The nurse commented that there were a few flower petals stuck to her pole when we got back from her walk.  I like that image...

She has had no further drainage since her surgery on Tuesday.  This is as expected since the lumbar drain has been replaced.  

Fortunately, she is having very few headaches which are controlled with ibuprofen and the occasional dose of tylenol+codeine.

We are expecting at least 10 days with the drain in, so that the repacked surgical site inside her nose will have the most time to heal.

Lucy has shown some artistic vigor - maternal traits for sure.  She has been drawing and dazzling the staff with her amazing detailed clay projects.  

Settling In

The last few days have been irritating, fragile days for Lucy, but she's better today, thanks to some cheery visitors and her first good sleep last night.

Here's an image for her, a friend's lime tree blossom:

There are times when all that is asked of us is just what is asked of the leaves and flowers... They continue in the plant, the sap flows up to them.

(Amy Carmichael)

Inwardly we are being renewed day by day.

(2 Corinthians 4:16)

Lumbar Drain Take 3

Lucy went to surgery around 4pm today.

She had another lumbar drain placed and had a vigorous attempt to close the leak inside her nose where they accessed her brain.

All the doctors felt the procedure went well and were optimistic that it could finally close if we could wait long enough with the drain in.

For now the plan is at least 10 days with the drain.

There is no home version, so we have asked the Name Plate committee to bring us a Silver plate with Lucy's name engraved for her door.

In reality many kids stay in the hospital for far longer and have greater ups and downs with chemo and the like.  We are fortunate to have to sit there with a drain in her back and headaches.  Maybe since I wrote that here, I will be more likely to remember...

Up & Down

We actually got to go home on Saturday.  Lucy had a great few days at home, carefully following the DONT precautions.  She felt so good that it was hard not to stomp in the rain or ride her plasma car.

We struggled not to worry too much about another leak.  Had to discipline myself not to look at her nose or ask her about every sniffle.

This morning around 5:30, Lu came in to tell us that she had noticed a funny taste, with drainage down her throat that seemed like a leak.  That's right, Lu diagnosed herself with another leak.

We came to Egleston again and walked into the ER with Lu dressed up like she was headed to a party, pulling a polka-dotted backpack.  I felt silly checking her in.  The triage nurse said, "What's wrong with your child?"  I said, "She has a CSF leak from her recent surgery."  "How do you know she has a leak?" "I'm a doctor."  I wasn't try to be a wise-guy, but I am worn out and wanted to cut to the chase.

The medical team mobilized and Lucy has gone back for a more extensive repair of the area in her nose where they accessed her brain before. AND
another lumbar drain.   I asked if we were up to our free drain yet, since we had now done 3.  Not yet...

At least tomorrow

Lucy slept great and kept a dry nose. She woke with the typical nausea caused by her antibiotic infusion, and a headache, easily dealt with by our friend tylenol with codeine.
The medical staff will continue to watch her nose for another 24 hours, then observe her bend from the waist to make sure nothing streams out. If everything looks good, she may be able to go home tomorrow afternoon.

Drain Pulled!

Lucy's surgeon pulled out her lumbar drain tonight after 12 hours with it clamped and no cerebrospinal fluid leaking out of her nose. If her brain's fluid cushion remains intact and the wound remains sealed, she will go home tomorrow.
She ended the night feeling great and giving away precious slices of Joy's chocolate chip pumpkin bread to her favorite nurse Katy and her neurosurgeon Dr. Wrubel.
Here she is earlier having her hair done by her grandmother Kakhi.

Clamp tomorrow

Glad that the nursing station was equipped with the age-old treatment for nausea - Coca cola.  (This is not product placement, so Liz don't get too excited.)  She woke with a slight headache and some nausea that are both better lying askew in the bed as you see from the photos.  She tried Zofran, which slowly began to work.

Once she started sipping the coke with the magical crunchy ice, she was well on her way to ordering breakfast.

Grover provided distraction until her breakfast arrived.

Our doctor stopped by and said we would proceed with plans to clamp her drain tomorrow.

Clamping the drain allows the CSF pressure to return to normal.  That should alleviate the headaches and nausea she has.

As the CSF pressure returns to normal it will test the surgical site above her nose.  We will watch for any more signs of drainage like she had before.  We really hope her nose stays clear for a day or so, because... If it stays clear after clamping, then the drain can be pulled & WE CAN GO HOME!  Please join in praying for this outcome.

Puzzles

Lucy and I both have had some good time doing puzzles.  

We had to shoo away one of the head nurses who came in and started trying to place pieces.  

Lucy takes great satisfaction in a completed puzzle, as any accomplished young woman would...

Better than medicine

Today, as Lucy was lying in bed with a growing headache, a hospital volunteer stopped by and asked an important question, "Do you want to do anything fun?"

Lucy didn't feel like talking much, but moved her head enough to make a nod.  The volunteer asked what she would like to do, and Lu said "puzzles".

A few minutes later the volunteer came back with three puzzles that they worked on for a solid hour.  Sure one piece was missing from the first puzzle, but with 3 brothers that is expected.

Sophia is an emory student who is interested in pre-med.  When I asked why she volunteered, she said because she was sick as a kid and spent a lot of time in the hospital.  It may have been me, but she seemed to choke up when she said it.

You should have seen her affirm her every placement of a piece.  I almost couldn't take it, but Lu loved every minute of it.

After Sophia left, Lucy said, "She was better than medicine".

I'll say nothing more...

Still Safe

Lucy's hospital stay the last 2 days has been an erratic experience. The medical staff worked out several small issues with the drain, and her mood, pain, hunger/nausea, energy level, and amount of csf drainage have each been constantly changing. Her basic safety, however, remains the same: no signs of infection, great labs and vitals, and-- most importantly--a dry nose.
The lumbar drain will not likely be pulled until Friday, to be certain that the surgery site has had ample time to dry out, and her brain has fully sealed.
Thankfully, she is ending today more like herself than any time since admission.
She lost a front tooth Friday night and shows off her gap for you below!