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!

I like the hospital

Well, at least one of us feels this way.  Lu really does feel cared for and attended to at the hospital.  

She loves being able to order her food off a menu with fewer low-carb restrictions than we impose at home.  She is piled with blankets and a custom pillow case.  Puppie a huge soft doggie is perched on the bed.  (We are grateful to our neighbor Frankie who brought that over.)

She is building good relationships with the nursing staff.  She has a few that seem to pick her each night. 

Lu has had more pain in her back than headaches in the last few days.  It is controlled with motrin and tylenol+codeine.  

Currently sprout's Caillou is keeping Lu company while I type this.  She has been making cakes, cookies and milk-shakes on the cooking apps on our ipad.  She has sudden bouts of pain when we mention doing school work, but that is a sign of intact child cognition.

Her brothers are going to pay her a visit this morning before church.  I give it 3 min before the room feels intolerably small once they arrive. 

Patch-Up and Lumbar Drain

Lucy was admitted to the hospital yesterday and had a short surgery last night; her two surgeons (neuro and ENT) met her at Egleston, put a lumbar drain back in, and tried to discern the source of the leaking CSF.  Apparently the bit of fat from her belly that had been packed into the bone/glue/tissue "torte" had begun to die, eroding the seal.

She has so far escaped the brain infection that can happen when the brain is exposed.  She is also experiencing very little pain, a huge surprise!  She is eating, drinking, moving around the room, and watching Sprout. She vascillates between cheerful/ asking for visitors, and fragile/ exhausted.  We will be here at least 5 days while they watch the drain, her nose and the rest of her body.

Thanks for hanging in there with us!

p.s. The overuse of passive voice in this blog drives me crazy, but it's indicative of the experience.  Not many active verbs apply.

CSF leak

Lucy has been doing great since our discharge on 8/30.  Back to school and helping running our house.

Yesterday she seemed to have a cold, as our other kids had recently.  Lucy has had a really strong immune system, so often doesn't even catch what the other kids do.  She had a runny nose and slightly achey muscles.

The more we watched, the more I became concerned this wasn't a cold, but a possible complication from her recent surgery.  A leak of cerebrospinal fluid from her nose.

I talked with her doctor this morning and he had us come into Egleston ER.  Her nose had mostly stopped dripping by the time she got there and I was feeling a bit dumb.

She leaned over forward and clear fluid leaked out of her nose.  Much more than usual for a cold.  Our surgeon agreed it was probably cerebrospinal fluid.

The plan is to replace the lumbar-drain in the operating room today at 5pm or so.  It is a very quick procedure, but the source of much of her pain after surgery.

Lucy is looking forward to ordering food from the hospital cafeteria tonight after the procedure.  

I am amazed at her bravery.  She actually enjoys being here.

Lots to celebrate

Lucy turned a corner yesterday, playing with visitors and taking a walk around the neighborhood. She went to church this morning and celebrated Richard's birthday tonight. Her appetite has finally returned, and her weakness and pain have significantly decreased.

What's ahead now?
We will continue to post any updates here, but likely there will be little news until we get her second MRI in November, the scan that will determine how much of the tumor is left.

She will have a follow-up cleaning of the surgical site with the ENT in a couple of weeks, and an eye surgery sometime this fall, but this week she will be working hard to catch up on all of her schoolwork. We think it's wonderful to only have 7 days to make up instead of being set back an entire month, as with the chemo last year.

Her reward for working hard tomorrow is "SpaBakery"-- an afternoon making cookies and getting her nails done with 2 of our favorite teenagers! Does it get any better than that?!

Sleepy Day

Back running the show

Overheard this afternoon:
"why is my desk so messy? I didn't leave it like that!"
" I'm so behind on all my chores!"
"Mom, can I start the bath for Liam?"
"would you just rinse his hair for me? I want to do the rest"
And after my catnap earlier--"wow, Mom, you look so much better!"

She is climbing into bed now all showered and happy after a lovely time opening all the truly generous packages waiting for her. Thank you, everybody!

We are still working out one of her endocrine med doses (her water-balance (DI) medicine) which shifted post surgery, and she remains on some temporary medicine for various discomforts, but they are keeping her comfortable.

Hopefully she will rest well tonight without all those beeps, labs and vitals!

Coming Home This Afternoon!

Big night and huge morning

On her first walk in the hall to get hot-cocoa!

As C mentioned, Lu's drain was clamped yesterday to see if the resultant increase in fluid pressure would cause a leak through her nose.  It did not leak!

She still had headaches throughout the day, but we started to find that her headaches were only when sitting up or standing.  This is a sign that the fluid pressure is starting to increase appropriately.  

A neurosurgeon explained why the fluid was needed in the following way ( I made a few modifications):  imagine the soft spongy brain as a tiny boat floating in the skull in fluid (the cerebrospinal fluid).  If the fluid gets too low (which they did purposefully) then the boat (brain) will bump against the skull and cause pain.  Therefore as the fluid stops draining the fluid level will rise causing the brain to be more comfortable and stop hurting.  

The clamped drain was still in her back and kept leaking onto her bed and back.  The doctors decided to pull her drain out last night.  Still no leakage through her nose!  

This morning Lu woke up smiling and without a headache!  Amazing!  We are thrilled.  Lu is watching sprout playing with happies you have brought and waiting on a hearty breakfast she ordered.  She took a walk down the hall to get cocoa.

The plan is to observe her today for leakage of fluid and go home tomorrow!

Sleeping Beauty

Lucy spent the last two days in a continued haze of blessedly strong medicine, eating very little and usually in pain if awake.

Her pituitary medicines have been challenging to regulate due to post-surgery changes, but merely complicated to manage, not dangerous.

Her nurses have been kind and attentive, bringing scheduled IV steroids and antibiotics, pain medicines when she asks, keeping her stocked with ice-water and gatorade, taking her to the bathroom, drawing labs through her port so quietly she hardly wakes up, and many other cheerful services. Her doctors continue to be excellent, respectful of us and caring to Lucy.

Today her lumbar drain (the tube in her back draining fluid from her brain) was clamped in preparation for its removal; since no cerebrospinal fluid leaked from her nose (through the surgery site) over the course of the day, she was considered safe to have the drain removed tonight. The neuro team will then regulate her to make sure her brain's fluid cushion is intact, and she can go home likely Thursday morning.

We expect her pain to markedly decrease with the drain's removal, and even this evening with it only clamped, she talked and ate in a way she has not all week.

Richard is there tonight while I try to sleep for the first night at home. When my word-retrieval goes, it's time to realize the shift is over...

Despite the disorientation of this experience, we feel at home in the love all of you have shown us this week.

Out of ICU

Lucy's MRI showed her brain was safe enough to move to the neurosurgery floor on Sunday afternoon.

The scan held little information, as expected, on the success of the tumor resection, due to the nature of the surgical approach. She'll have another one in a couple of months to decipher that.

But we are grateful to be in a quieter, more private space, and happy to lose several irritating tubes and cords.

She still primarily spends her time sleeping between headaches, but seems more herself when she wakes up: she can eat small amounts, expresses herself well, and enjoyed changing into a cute nightie.

Likely the lumbar drain will not be removed until tomorrow, and her headaches will persist until that is removed, but Tylenol with codeine tag-teamed with morphine keeps her comfortable. After the drain is removed, she will remain in the hospital for observation at least another day.

Many of you have asked about visiting. She is not up for chatting, games or movies yet, and the room is very small, but her parents would be cheered up by a quiet 10 minute friend anytime!

Thankful

This morning we have much to be thankful for:
-Lucy's first MRI without sedation, due to the lack of sedation doctors around on Sunday. If she couldn't stay still for the hour-long scan, she would have to wait until this afternoon, but she did great, with lots of pain meds and an American Girl movie on. (Results not in). She even gave a smile when she came out because she knew she had met a challenge.
-A beautiful sky out the hospital window.
-The IV morphine that gave Lucy a great night's sleep.
-The endocrine medicines which, as usual, completely replace her pituitary hormones so that her body functions properly and her labs, heartrate, blood pressure, and breathing are all perfect.
-Three teams of very smart people (icu, endocrine, and neurosurgery) following every data point.
-Attentive nurses
- This fun blanket on her bed when she got back from MRI
-Presents! And the ten minutes of alertness to enjoy opening them.

MRI tomorrow

Thanks to lots of morphine, Lucy's day was mostly lots of sleeping, broken intermittently with pain and/or vomiting. Due to hospital overload, we found out this evening after waiting all day that the MRI will be tomorrow instead. She opened her eyes for more than a blink for the first time tonight, alert and sparsely conversant, and ate a little bit of dinner after a day without food (because waiting to be sedated for the scan).
Richard spends the night in the sleep room tonight to rest up for his 20 mile (!) training run tomorrow, in preparation for his October marathon. He says it's good stress relief...

I'll end with a lovely thought for the end of a Saturday that was mostly survived:

That’s why it’s okay to not be okay sometimes. His peace river is trenched low-down deep, and we dredge there in sorrow.
Amber Haines

Headachey morning

The night passed with the aforementioned noises, but I had forgotten about screaming babies, loud voices, and just how loud and persistent the beeps can be.

Lucy tolerated all that well until early this morning, when she started having increasing headaches.  We think there is a component of sinus soreness from the surgery.

The larger contributor is the headache from the lumbar drain.  The drain is in her spinal fluid to off-load pressure on the wound at her nose and prevent leakage through her surgical site.  I had forgotten from medical school that the brain makes over 400 cc of cerebrospinal fluid per day.  They have drained around 250 into the lumbar drain to keep the pressure low.  Draining that much fluid can cause a full-scale headache.

She is having opiate dreams and seems comfortable now.

She heads down soon for an MRI to see what is left of the tumor.  Our Neurosurgeon said it can look messy after a big surgery, so not to be too concerned if there is residue from the procedure.

[The photo is of Lucy with a bar of soap in her hand at a recent appointment.  We were planning to smack it at each other, or, more likely, at an unsuspecting nurse's face.  Ah, the coping mechanisms we employ!]

Night at the ICU

Wow, we have been relaxing in the ICU for the last few hours.  Lucy has had some pain, but it has been easily controlled with a few doses of pain medications.

Lucy enjoyed an unrestricted meal covering the spectrum of the carbohydrates - animal crackers, grapes, cheese ravioli, tater tots, and gatorade.  Her appetite was fantastic.  Yes, her parents were aware of her food order.  Meals in the hospital are all celebrations.

We are settling in for a night of interrupted sleep.  C will sleep in a special family sleeping room, and I will take the couch shift.  I like the reminders of my residency - distant bangs and close unremitting beeps, clanging of trash bins, doors opening and blood draws.  Should have a good post-call haze by morning.  (If you have not gone through residency, then this won't make sense, unless you have spent nights in the hospital.  I hope not.)

Still I am happy to have the chance to sleep in the room with a girl recovering very well from a big surgery.  

Finished!

All, we're happy to report that this is finished! We've spoken with both our surgeons now, and they are encouraged.

There were able to remove about 90% of the tumor and reopen the catheter.

They were not able to get the remaining portion of the tumor, because of bleeding that occurred. There was some reasonable blood loss, requiring a transfusion, but she did not have low blood pressures or other signs of severe blood loss.

The plan will be to monitor her in the ICU over night with a lumbar drain to help keep the cerebrospinal fluid pressure from getting too high, and leaking through their surgical site.  After a few days, they will remove the drain and ensure there is no further CSF leakage.

We are very happy that we will see her in half an hour or so.

Still doing well

The nurse just indicated that Dr. Wrubel was still in the process of attempting to extract the cyst.

Meanwhile, the boys are making bows and arrows with G. We're so grateful for their fun weekend of "Camp Spooner" with their cousins!

3 hours in...

Vague update by nurse just given. "things are proceeding well..."

Call us selfish for wanting actual info, but no more was forthcoming.

Still things are going well.

Thanks for hanging with us.

Update ENT halfway through

Just recieved another call.  The ENT surgeon who is working through Lucy's nostril to open one of the sinuses is halfway done.  Dr. Stathum our ENT will expose the base of the skull and then tag Dr. Wrubel our neurosurgeon who will go through the other nostril with a camera and start.

Lucy's Blog

Surgery is Underway

We just got the call from the nurse who will be updating us every hour or so during surgery.

Things are going fine.

They have placed a temporary lumbar drain - to keep the pressure of cerebrospinal fluid (CSF) from getting too high after the surgery.

They have also taken a fat graft - a small piece of fat from Lucy's abdomen that will help to patch the surgical site and prevent drainage of CSF from her nose after the surgery.  We both offered our fat (in as much quantity as necessary) to help Lucy.

Just went back

Lu was very chipper. Versed gave liquid encouragement. Her dad asked for some but was denied.

Surgery time planned for 4-5 hours.

We were amused to learn she would be getting cocaine during the surgery.  Our hyperactive ENT surgeon said she would be using cocaine. She rolled her eyes when I asked who it was for. Cocaine is a very good anesthetic that also decreases bleeding.

We will be updating throughout the day.  Thanks for your prayers and support.

Letter to Richard's colleagues with background

Letter from Richard to his work colleagues with background

Colleagues,

You may have heard rumors about an imminent surgery for my daughter Lucy.

Some of you may not know the background on this. 

Lucy (7)  was diagnosed with a craniopharyngioma in early 2009 when I joined the division. She has had surgery, radiation, a drain placed in the cyst, and finally chemo last October. On our last scan in June the tumor has continued to grow. 

Lucy has pan-hypopituitarism, small visual field deficits, and recent headaches. Despite these things, she is a healthy and active child with no cognitive or physical impairments. This morning she was asking about what she should do before her CT & pre-op appointment - run a mile, ride my bike, or do mommy's insanity workout video. If I were not a doctor, I would struggle to believe her diagnosis.

She is scheduled for a transphenoidal resection of the tumor at Egleston tomorrow morning. Our doctors give us good hope that they can either completely resect the tumor, or at least debulk it with fairly low morbidity.  They hope she could recover within a few days if the surgery goes as per the norm. I invite your prayers, good thoughts, and whatever else you can throw our way to help that occur.

Thanks for all who are helping me with coverage, being patient when I'm distracted (above baseline), and generally offering encouragement.  I love our division, especially at a time like this.  

We plan to give updates through a website Lucy in Atlanta, in case you want to see how it goes.

Thanks,

Richard