That Stupid, Stupid Leg Brace

Lauren tells me tonight that the stupid doctors should have to wear the stupid, big, black brace at night so they can see for themselves how uncomfortable the stupid thing is.  She needs to wear the stupid thing to make sure that she maintains full extension on her leg.  In other words, it's all about how straight she can make and keep her leg.

The problem is this: the stupid, big, black brace isn't super comfy... and she's got a fresh incision that runs about 18" down her leg from the top of her hip past her knee.  Ace bandages scratch her skin at the velcro connection (even when it's tucked and positioned properly) and yoga pants are too hot underneath.  We haven't tried tights, but that seems extreme for sleepwear. The brace cannot go directly on the skin because it also scratches. Arg!  What's a girl to do?  Well, if she's my girl, curses the thing with loud and colorful vocabulary, dissolve in tears, takes her night meds, and tries to fall asleep (eventually succeeding) in the stupid, stupid leg brace, all the while cursing those stupid doctors and the stupid cancer.

My heart breaks for Lauren when she's so desperate and sad.  It's wearing. Resolve and good intentions break down.  Energy lags.  And it all gets a little too much.  The wicked dexamethasone takes 2-3 days to leave her system: http://en.wikipedia.org/wiki/Dexamethasone
Steroid rage is a real and ugly thing.  It's not fun for anyone, especially Lauren.  One moment she's fine, the next she's spitting fire, the next she's laughing, and the very next minute she's weeping uncontrollably. It's days like this that we all try to muddle through the best we can.

Tonight (pre-stupid black brace breakdown) we braved the early evening mist, otherwise known as spring in Seattle.  We walked next door to MetroMart and bought an odd array of items for a picnic on the bed.  I posted our goofy dinner to FaceBook as we watched a marathon of movies featuring Johnny Depp as Captain Jack Sparrow.  We spoke like pirates and tried to think happy thoughts.  We tried not to feel sad or annoyed or frustrated as we pulled crispy skin off Lauren's chicken and fed it to Skittles.  Lauren looked up nearby massage and nail places (pedicures) for a Mother's Day mother/daughter outing.  And both of us tried not to cry.  It's a tough assignment some days.

We're going to get back on the physical therapy bandwagon tomorrow. She's got leg lifts to do, as well as stretches.  There are so many things that Lauren is REQUIRED to do, places she has to go, procedures she has to endure.  But tomorrow we're gonna sleep in.

As for me, I hope for a little less steroid madness--my sweet daughter as Linda Blair from the Exorcist. Steroids do awful things to some people. We get it, the crazies, complete with 360 degree head turning and bodies flying around the room.  But as bad as it gets, as angry or frustrated as I become, I find it hard to be angry with Lauren.  She didn't ask for this.

How many times can I say "Cancer Sucks" before it sounds hackneyed and/or cliche?  Cancer Sucks.  "Yeah, thanks for the news alert, Captain Obvious."

I promise, reader, that not every CaringBridge posting here on Lauren's site will be drippy and depressing.  I wonder, sometimes, if others suffer the same kind of "bummer fatigue" that I feel day to day.  Who wants to read sad news all the time.  I mean, where are the dancing men in gold lamé? Where are the wish granting unicorns, who eat candy corn and poop glitter? Where is my winning lotto ticket and my four leaf clover? More importantly, where are these things for Lauren?

Happy thoughts.  Keeping our faces to the sun.

An Ode to Nurse Beefcake and Other Things That Make Us Happy

Nurse Beefcake, thank you for your cool-cat beefy ways. Thank you for sauntering into our room tonight and bringing a smile to my daughter’s face.  Your distracting ways take her mind off the nausea and chemo and cancer for a few precious moments.  Do you know what makes me happy?  Your sweet, kind, steamy presence allows my daughter to be a regular girl who crushes on a regular guy like the rest of her regular friends back home.

A new Kindle Fire makes us happy because it makes you happy, my daughter.  How could I say no to a piece of technology after you sold me on it: “I’ll be able to read books on it, Mom.  I could listen to music and watch movies and check FaceBook when we’re in the hospital.”  How could your dad and I say no to you after all of the things you’ve been through these past nine months?  I’ll continue to love and read my paper books like the old-school girl I am.  I’ll continue to love the way a book feels in my hands, the whole sensory experience—the smell of books old and new, the way the paper feels under my finger’s caress.  I’ll continue to be a hedonist and bibliophile with physical tendencies and I’ll continue to love the techie in you.



And the other things that make us happy?  Dancing to music and feeling the beat, no matter who might be watching.  A bag of bunnies.  Pillowcases made with love.  Cards and care packages and loving posts on FaceBook, including YouTube videos of dogs that talk.  Honestly speaking, quality toilet paper makes us happy.  Rainbow beads make us happy too, as do our favorite rainbow bead people: Sonia and our Child Life heroes Austin and Ashley. School, reading, good movies that make us laugh or cry, and sunshiny days.  And driving down 1-5 towards Portland makes us happy.

Dad’s mashed potatoes.  Fuzzy blankets and PJ pants.  Friends who love us with or without hair.  A single room for chemo when we were expecting a triple.  Roller derby love and our derby sisters make us super-duper happy.  Bubble bath that smells like Hawaii and dreams of summer.  Family.  Friends.  

Lions and Tigers and Fevers, Oh My!

It’s been a while since I’ve updated and quite a bit has happened.  This experience the past few weeks has really bankrupted us… physically and emotionally.  I know that I’m exhausted and can only imagine how tired Lauren is.  SO tired.  More than tired.

Check out the hardware!

Out with the old (the broken plate and several bone screws)

                                               And in with the new (longer screws and pins)



The revision surgery to install a new plate in Lauren’s leg went well (April 11th).  Lauren seems to have more mobility in that leg now, including a tiny bit of dorsiflexion (the ability to lift her foot up).  That’s a big HURRAH! as Lauren has not been able to lift her left foot at all since the big surgery last November.  “Foot drop” (http://en.wikipedia.org/wiki/Foot_drop) is a risk with limb salvage surgery, a procedure that removes cancer (most often bone and soft tissue tumors), avoids amputation, and preserves appearance and function of the limb as much as possible.  Lauren’s primary orthopedic surgeon (rock-n-roll star Dr. Chappie Conrad) helped pioneer limb salvage surgery in the United States and established the bone tissue bank in Seattle.  It would be fair to say that Dr. Chappie saved Lauren’s left leg.

Floppy foot drop is a result of damage to or stretching of the peroneal nerve. In Lauren’s case it happened when the tumor in her left leg was removed, along with much of her left femur.  Foot drop can be temporary or permanent, and can cause tingling, burning, and/or “pins and needles” pain in the affected limb.

L's AFO is purple/blue with stars

Lauren wears an ankle foot orthotic (AFO) and takes a medicine called gabapentin to treat nerve pain.  In addition to general pain and annoyance, the condition has slowed her physical therapy efforts.

Walking is more difficult without full foot sensation.  That said, seeing even a small amount of dorsiflexion is important because the nerve takes up to 6 months to heal; after that window has closed, recovery of the nerve is less promising and a normal walking gait is not possible.  (Try to walk without lifting the foot and you’ll see what I mean.)  Lauren is at the end of month 5 in that 6 month window, so the dorsiflexion is super exciting news!  Keep your fingers crossed for continued progress in the foot-lifting department.

I will say that this latest surgery meant more pain for Lauren.  It’s more physical therapy—starting over from the beginning.  After ALL that hard work?  We rant and rave, we make faces, get angry, sulk, and cry.  Yup, this whole “do over” surgery and recovery to fix the broken plate makes me want to cry.  Then I think how much stronger my daughter is than I am... and I don’t have the physical pain. Speaking of that, Lauren is back on long- and fast-acting morphine, instead of the occasional breakthrough oxycodone.  My girl has a pretty high pain tolerance, so that’s saying something right there.  *sigh.

Pain isn’t just the bodily type, but rather, it’s written there. Would it be too much to call all of “this” depression or simply the blues?  Lauren’s scar that was nearly healed for a summer of swimming is back to a red, raw, fresh wound; the doctors say she can’t swim until all of the scabs are gone.  Drag.  And as shallow and vain as it might seem, I think the new wound makes her all the more self-conscious.  Up and beyond the typical self-consciousness of a middle-schooler.  With cancer.  With no hair.  With a limp and two leg braces. With a giant red zipline down a once perfect leg.  Her original incision is now several inches longer to accommodate the new hardware and plate (longer, thicker, and wider).  I’m making a big deal of this, perhaps.  She’s lucky to be alive.  She’s lucky to be alive. And she's lucky to have her leg.  I understand this deep within the logical left side of my brain.  Perhaps I’m projecting, hearing her as I do when she cries in the shower, looking down at her water glassed gams, imagining what she’s thinking when she can’t even tell me.  This new scar.  Our home is Hawaii.  Our home in Hawaii where skin isn’t hiding for most of the year under long pants.  Lauren lives in shorts, small skirts, and bathing suits most of the year.  The pain of this year won’t end when we fly away from Seattle.  Maybe it’s not meant to.  

Dr. Douglas Hawkins  

Lauren appears out of the pan for the time, but we’re into the fire today.  In-patient chemo.  Our favorite oncologist bartender (Dr. Doug Hawkins) has mixed up the VDC cocktail: vincristine, doxorubicin, and cyclophosphamide.  She’s on a 75% dose of dexamethasone, a strong steroid more potent than prednisone that works with the efficiency of chemotherapy drugs and as an anti-nausea drug to boot.  Bonus, but it makes Lauren a bit like Linda Blair in the Exorcist—spinning head, colorful vocab, and all.  But there’s less demonic projectile green pea soup with the dex because anti-nausea means less barfing.  Less barfing is always good.

After the surgery on the 11th, Lauren was plagued with about 10 days of intermittent fever.  They never did figure it out.  Temperatures in the red zone: 101, 103, 102, 103, 103.  Mostly 103.something.  A helpful nurse printed out all of the fevers for me in a seven day stretch, even graphing it.  Two pages of single-spaced, tiny line item temperatures.  A line graph with sharp peaking spikes resembling a needle reading seismograph chart of the San Andreas Fault.  The nurse was so proud of her work.  I, on the other hand, felt dizzy and really, really scared.  The doctors futzed around with different thoughts about the fevers.  We tried Tylenol, the incentive spirometer, cold compresses, ice packs under the arms, chanting.  See, this could be a HUGE problem after chemo when Lauren’s immune system tanks.  And this scenario just happened to one of Lauren’s best friends here, also a cancer patient.  She had an infection, but was taking IV antibiotics.  Then her ANC dropped and this sweet young gal ended up in the emergency room with a temperature of 106.4.  She was transferred to the ICU and was treated successfully, but she could have died.  Freaks me out.  She could have been my own child.  She could have been any of the kids we know and love here.  Just… BOOM.   I went that night and stood awhile with her mom after Lauren was asleep.  We were already in the SCCA cancer wing; the nurses there were also worried about our friend.  They kept a special eye on Lauren while I was out.  When I returned to our hospital room, I couldn’t sleep.  I stayed vigil another hour or so until the sun peeked through the blinds.  Things seem less desperate in the daylight hours.

We were delayed with chemo.  The docs wouldn’t start it without a better understanding of the fevers.  But Lauren’s fever, while scary and dangerous, sure wasn’t 106.4.  The docs referred us to the infectious diseases team.  They introduced themselves to Lauren this way: “We’re like the people on that TV show ‘House,’ but we’re nicer.”  Ha!  After all the questions and tests and “team consultations” they decided it might be the antibiotic (Piperacillin.  Can you believe?) and a drug-related fever.  Sure enough, they stopped it and the fever disappeared.  Still not 100% sure.  We’re hoping that she doesn’t have a low-level infection.  If so, we’ll likely spike a fever when her ANC drops to zero.  Fingers crossed about so many things.

We’re glad we’re back on chemo, albeit 3 plus weeks late.  It’s such a strange thing for which to be glad—checking into the hospital, filling the body with toxic chemicals, lying around all day waiting.  Waiting to throw up… or not.  Waiting for visitors. Waiting for meds to kick in.  Waiting for time to pass.  Waiting for a nurse shift change.  Waiting for the day to wink its eyes closed.  And waiting for not a promise, but a mere possibility or hint of a cancer-free future.

It’s 11:05pm and I’ve missed Starbuck’s downstairs by 5 minutes flat.  I was going to meet my friend whose lovely daughter is no longer 106.4.  We were going to go catch a late night coffee or tea, sit across from each other and commiserate. She knows me better than some of my own relatives now because she knows so intimately what I’m going through.  We share a similar experience here as caretakers and cancer moms. It’s like we have a secret handshake now to a club no one wanted to join in the first place.  We missed our mini date because Lauren started to feel sick.

Best not to wait for nausea to become more than a whisper.  Headache often leads to hiccups, then tummy pain, and then the Pepto-Bismol pink emesis bucket.  Wet washcloths.  A sleepless night.  We have avoided all that Linda Blair ugliness this time.  Not sure if it was the IV Benadryl or a surprise visit from Ross, aka Nurse Beefcake, one of Lauren’s favorite (and few) male nurses.


So, I’ve missed late night caffeine with my friend.  I’ve got a fresh but not-as-fun-to-drink-alone 12-pack of Coke Zero here in the hospital room.  For now I’ll stick with that popular theme: Waiting for chemo to start again in a half hour.  Waiting to read a bit of vampire fluff.  Because I’m waiting for the two Advil I just swallowed to do their job.  Waiting for a new day tomorrow.  Waiting and wondering…

Silver Linings and Such

We had another stinking night of unexplained fevers.  Blood cultures and best guesses have led to nothing conclusive.  It makes me want to scream.  I was up late texting with Todd, who made a late night visit to the hospital to bring vital supplies: fluffy jammie pants (thanks Sue!), some snacks, and Lauren’s bunny.  Here, I would like to acknowledge Todd, the quiet and unsung hero.  When Lauren goes into the hospital, I go with her.  It’s traumatic enough to be so sick and away from home.  Having me with her is at least some comfort, I hope.  While we’re in the hospital, Todd is our lifeline.

He brings food and snacks (sometimes the strangest requests and at the strangest hours), refreshes laundry, and supplies movie rentals.  He does this with a smile, even when the request is taxing.  “Can Dad bring me…. (insert list of two to twenty or so items).”

Hawaiian Plate Lunch

Todd found a spot to get good Hawaiian/Local food here in Seattle, so Lauren can get her loco moco, saimin, and kalua pork at the last minute.  Most of the time, he makes and delivers the food himself.  If we had to depend on the hospital food, I am quite certain that Lauren would have a feeding tube right now.  And yes, it’s that bad.  How cliché.

We were lucky enough to get a “home” pass yesterday, allowing us to escape the dry, recirculated air and beeping machines for a few precious hours.  I spent almost all of my time in the bathtub reading.  Lauren visited her friends Jamie and Katie.  We cut our timing almost to the second getting back to the hospital in time for her IV antibiotics.  It was worth every moment.

Here’s a silver (or at least nickel plating) lining.  We’ve been able to room with a friend during the time we’ve been at the surgical wing.  We found out that Lauren’s friend Nicole was having her big surgery on the same day, so I made some calls and asked if the girls might room together.  Initially it didn’t look good; the hospital is full to the rafters.  I was told that a room with two beds was not available and that both girls would likely end up with infant or toddler roommates.  (inner groan).  Imagine my surprise when, after a long day last Wednesday we got up to the room and saw Nicole’s name on the door, along with ours. The charge nurse was able to move things around and put the little ones together so the older girls could share a room.  The girls have been great surgery recovery companions, encouraging each other as they do the CPM bending contraption together (as I type this, both machines are humming away with girls strapped into them).  The “misery with company” makes the pain and discomfort a bit more manageable.  They try to distract themselves with movies, and by chatting/eating/napping side by side.  Last night Lauren said, “You know, other than the surgery and pain, this has been a really fun week.  Like a party.”

Does this look like a party?

A young friend sent me a text this morning, apologizing for being a bit distant as of late.  Reading his text
made me smile and want to cry at the same time.  Cry in a good and bad way.  I would like to write here what I tried to express to him this morning.  Our family has no expectations of anyone, knowing that we have a wonderful support community.  We can feel that people are there for us when and as they are able.  So many people have shown us kindness, uch more than we could have imagined.

These latest developments--the surgery for the “bus’ up leg” and seemingly never-ending fevers—have been disheartening, to say the least.  We thought we were almost there.  Almost done.  We were giddy, really, with the thought of summer and being away (finally) from Seattle Children’s Hospital and the Ronald McDonald House.  Don’t get me wrong: we’re thankful for both of these places.  For the great medical team and a safe and affordable place to live right by the hospital.  But we’ve been here since July... we’re ready to be finished.  Summer plans seemed like a reward for all the struggle, pain, and hard work, mostly on L’s part.  Lauren’s “ugly scab” on her knee, the one she’d had since the initial surgery in November, hd finally healed and fallen off, and L was excited about bath tubs, swimming pool, and hot tubs.  Then ** BOOM **

Now she’s back in the CPM torture device and a wheelchair.  Her crutches are propped, once again, in a corner of our room.  Unused.  Just like that, it feels like all we’ve worked for has been ripped away.  This is not a self-pitying bit of hyperbole.  The feeling is almost palpable.  The hardest thing though, has been seeing how devastated, yet oddly resigned, Lauren is about all of this--cruel and unusual punishment for all the hard work she’s put in.  When I see her face as she quietly readies herself for physical therapy, despite being in such pain, makes me want to cry.  The way she turns her head to the side, avoiding eye contact when the doctors come in to poke and examine her early in the morning.  The way nurses wake her easily from a dead sleep to take pills and take a temperature.  The way she falls back asleep, as if this nightly disturbance is routine.  And it is.  The way she obediently lifts her hips and leg when I wake her at midnight and 4 a.m. and 8 a.m. and every alternating two hours around the clock.  The way she apologizes to Nicole, her roomie who has just been introduced to the evil CPM, about the pain.  “I’m sorry it hurts, Nicole.  I know it does.”  The way she sleeps in hardware—braces, orthotics, and machines--that certainly can’t be comfortable.  The way she “ambulates” in any number of ways, but none of them comfortably.  The way she tolerates a needle poke without flinching.  Any number of things.

The doctors just rounded in our room.  Orthopedics has “released” us to HemOnc and the SCCA (Seattle Cancer Care Alliance) wing.  The docs were cagey when I asked about a room.  They know we’ll be moving because the charge nurse called to tell them we have a room; but, the wing is full, so there is a good chance we’ll be crowded into a triple room.  Wish us luck.  Wish for us an uneventful chemo in a double room.  Wish for a cure.  Wish for me to find a way out of the tearful and unproductive mood I’ve been in lately.  (* snap, snap.  Get a grip, Piper!)

Pain washes over all of us, but we are buoyed by moments of lightness and laughter.  Lauren teasing the doctors.  Visitors, friends, and family.  Cards.  Snuggling while watching “My Big Fat Gypsy Wedding” and “What Not to Wear.”  Laughing with Nicole and Karen.  But honestly, there are fewer of those moments lately.  The impotence I feel in not being able to “fix” this situation for her, of not being able to kiss away the boo boo, is unbearable.  Lauren’s fighting spirit seems to have broken along with that plate in her leg… and that, in turn, breaks my heart.

What Is Bobby Flay Doing To My Daughter?

The nurse just came in and told me that Lauren’s wound culture from April 11th came back yeast positive.  To be specific, the report says: “Yeast isolated from broth only upon extended isolation.” [emphasis mine]

So… there is a broth part of Lauren’s wound?  As opposed to the vegetable and stir-fried meat portion?  Has she been cooking saimin down there?








Storing bagels in her pants?  Pressing pizza dough against her knee?  Brewing beer?  Apparently I have been watching far too much Food Network during our time in the hospital.

A Pain In The...

Tick...

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We’re in a holding pattern where days and nights meld into a daze of timelessness.  Lauren continues to get fevers and her nurses continue to take culture labs, which continue to come back negative.  Drs. Paul and Dave, orthopedic residents, came to visit us yesterday.  One of Lauren’s drains was pulled, but she still has one.  Until they nail down the source of her fevers, she’ll probably keep the second, larger wound drain.  Hoping to get it out tomorrow because the damn thing catches on everything.

I’m so tired and so is Lauren, but here is a reason not to fall asleep: you might miss something important.  While I was asleep yesterday, our day nurse and the hospitalist unilaterally changed Lauren's pain meds. I was not consulted, nor was I made a part of the discussion until it was a “done deal.”  I was simply informed.  Really.  Let me say for the record: this is not our first leg surgery, not our first trip around the surgical or physical therapy block.  For the first surgery, Lauren’s combined medical team--Ortho and HemOnc (Hematology/Oncology)--gave us a detailed plan of care and set us on the right track for what we might expect, including setting up a plan for pain management.  But there appears to be a small pissing match between Orthopedics and HemOnc.  When we’re in the hospital after a surgery, Lauren is listed only as an Ortho patient.  They don’t acknowledge, for the most part, that she is a cancer patient as well, even though oncology patients heal differently and respond differently post-op.  And if she didn’t HAVE cancer to begin with, she wouldn’t be having surgery.  The two cannot be separated in my mind.  

This isn’t our first medication snafu.  When we checked in after surgery on Wednesday night, Lauren’s medication list didn’t transfer.  This file should have been in the computer, but the hospital didn’t seem to “have record” of any of her regularly scheduled medications.  I had to request a hardcopy from the HemOnc clinic the following day so that her other meds would be available.  

Bone pain is deep pain; more than one medical professional has told us this.  After surgeries, Lauren is on a long acting morphine and receives it twice a day to cover the deep, constant kind of pain. In addition, she has a short acting “breakthrough” morphine for acute pain if/as needed and Ativan for muscle spasms.  Our presumptive, drug-dropping duo lowered her long acting pain reliever by HALF and mentioned (offhand) that they were thinking of dropping the Ativan all together.  Needless to say, Lauren woke up crying and in serious pain at 4am this morning.

This might seem like a minor issue, but Lauren’s medication list is something we have tweaked over months and months.  This being her fourth surgery, the team has a good idea what works best for her.  And the drugs to help with chemotherapy shouldn’t have been touched at all.  In the end, what bugged me most was that the nurse and hospitalist were out of line.  Seattle Children’s Hospital makes a big deal about treatment being a “team” process... and this wasn’t.  Parents and patients are supposed to be part of the team.

At this point, I'm not sure what to do about her pain medication, other than complain (which I have done).  When I asked why her medication was lowered, they said it was because she was sleepy during the day.  It’s true, Lauren has been sleepy.  Then again, she’s recovering from major surgery, is woken up at least once an hour round the clock for medications, to check vitals, when her machine alarms beep, when she’s loaded into her CPM machine, and to use the potty.  Mostly I think she’s sleepy because she’s working so hard at healing herself.  This effort takes every ounce of her strength.  She's 2 hrs on, 2 hrs off with the CPM bending machine.  Lauren made her 90 degree goal on the second day after surgery and has surpassed it to 100 degrees.  When not in her CPM, she’s in her brace set to zero extension, which also hurts.  She has already been up and walking with her walker, does stretches, the incentive spirometer every hour for her lungs, and is using the regular potty during the day/commode for night use.  Lauren is tired because she's working hard.  When she has any “off” time, she’s either eating or sleeping.  Another part of it might also be that she's been feverish since Weds.  Not sure why, but they've drawn labs for cultures daily and gave her a lung x-ray on Sat.

I'm frustrated.  The surgeon had to increase the surgical site by a good bit and Lauren is clearly hurting.  And she’s back to square one with physical therapy.  Lauren is not usually a complainer and seems to have a high tolerance for pain.  While I don't want her dopey, I don't want her in a lot of pain, especially in the middle of the night.  Frustrated and sad.  Who wants to see a child in pain?

A friend recently took her new baby for his first vaccination.  She shared that when they injected him and he started that desperate baby cry, she got teary-eyed and weak-kneed.  I feel this same kind of thing.  Sometimes my heart hurts so much that I think it’s actually breaking inside.  As moms, I think we're hardwired to do all we can to protect our children from pain and discomfort.  It must be the same for dads.  And  let me preempt a possible argument right here: I’m not talking about trying to shelter my kids from life’s inherent pain and suffering.  To a certain degree, life’s troubles and tribulations (and yes, pain) help shape and define us.  I’m talking about advocating for my child, doing what I can as a parent to mitigate unnecessary pain and suffering.

Please let me share what else I told my friend with the baby:  Having loving support from friends and family makes a world of difference.  It makes me feel less desperate, overwhelmed, and sad.  For that and more, I thank all of you who are with us during this challenging time.  You are loved and appreciated, every one of you!

A Strange, Sleepless Kind of Existence

Where am I?  Day or night, I have a place to look to confirm my existence--that I am in room 4020, bed 2, at Seattle Children’s Hospital, in the Giraffe wing.  Yesterday was April 14th, 2012, and our current nurse is Kelli, a woman with a quick step, kind eyes, and a soft, reassuring voice.  The date hasn’t changed to the 15th because the room is dark and most everyone has gone to sleep.  It will be Sunday, April 15th when the sun shines in a few hours.  And only then.

Early Whiteboard

The dry-erase care board at the foot of my bed is my go to source of fast info.  It keeps me centered and “on task” during our hospital stays.  Each bedded patient has his or her own board which is littered with information, instructions, and things to do.  The boards are divided into fourths to compartmentalize the writing.  The top right is orientational stuff, things you would know or remember if you weren’t stuck in a sinkhole of hospital time:  Where am I? What is the date? Who is my nurse? Who is the doctor?  To what team do I belong? And what services am I receiving?  Most of this information doesn’t change, save the date and one other important bit: the nurse’s name.  Early on in our treatment, the information was sparse.  We drew pictures or posed silly questions to the "team."  Here is an example of a whiteboard from early in Lauren's treatment, before things got serious with surgeries and infections.  We asked the team two questions: 1) What is the difference between a simile and a metaphor?  2) What does "b" stand for in the equation: y = mx + b?  

Our board today isn't silly or sassy; it's a lifeline.  A thin gray smear reflects the number of names written and then erased with a quick finger during shift change. Day nurse, night nurse, day, night, day, night. We mark time with names and faces.  In room 4020 we’ve seen a variety of scrub-clad nursing professionals. I do my best to learn their names, ask them questions as needed, and thank them for the job they do.  Nurses are exceptional beings, each one a unique mix of skilled healthcare provider, caregiver, interpreter, counselor, A/V and tech operator, confidante, endurance performer, information and advice giver, and scribe.  It is most often the nurses who update the dry-erase board.  Without them and the posted care board, I would surely be lost.

Let’s continue a tour of the patient care board:.Top right is the plan of care.  In this section I can expect to find a list of things to be checked, poked, and prodded by different members of the healthcare ‘team.”  These items are often set apart in bullet points as cryptic medical jargon:

NPO 2300h              
Vitals every 4
CMS √ every 2
JP x 2
Ax Q4

In my time as cancer caregiver, I  make a point to learn the vocabulary, lingo, and abbreviations of medi-speak, as well as the social and cultural norms of this strange culture.  I observe nurses working together, make note of the differences between day and night nursing, and learn a bit about hospital hierarchy.

It’s immersion learning on my part.


Bottom left on the chart is reserved for family questions and concerns. Here we write questions we might have for the rounding group of docs, who arrive en masse at O’Dark thirty each morning.  When will chemo be finished?  When will you remove the stitches?  What time is checkout at your fine establishment?  I’d like to go!  The doctors usually read this part of the care board.  At least I have convinced myself they do.  Months ago in one of my piss and vinegar moods, I pondered animal group names: a pride of lions, a murder of crows, a pod of whales, etc.  I wondered, what name one might give to a group of doctors, given that taxonomically, human beings are mammals?  Doctors are simply another type of human being, despite a self-serving, pompous, and misguided belief in a more evolved doctors-only subspecies of homo sapien known to AMA card carriers as homo sapien medicalis big vocabularis.  As a service to science and Linnaean order, I decided the group name would be a drove of doctors.  Not only does this name tickle alliteration, but a “drove” is also the name for a group of asses. (I’ve mentioned my healthy skepticism and “Question Authority” stance for individuals in positions of power, including those in white coats?  Yes? Shocking, I know.)  Sometimes I use the family questions space to poke fun at rounding docs.   Once I wrote: “What is the square root of apple juice?  Calculate with and without the use of a straw.  Show your work.”  Today our portion of the care board has Lauren’s CPM goal and usage chart.  It provides a handy chart of on and off hours:

Goal: 90 degrees
12a-2am—ON
2am-4am—off
4am-6am—ON
6am-8am—off
8am-10am—ON
10am-12pm—off
(and so on, ad nauseam, for a 24-hours)

I use the questions space this way because I have too many questions to ask a group of residents and fellows.  I have written them down and will ask Dr. Chappie (L’s orthopedic surgeon) or Dr. Hawkins (L’s oncologist).  I might point out that getting Lauren into and out of the CPM machine takes about 10-15 minutes each time.  Needless to say, I’m a bit sleep deprived, more so than usual this week.  It is also my great pleasure to announce that Lauren met her 90 degree angle goal for the CPM today!  The machine works continuously, even when she sleeps.  I can't imagine it's comfortable.

The final quadrant, lower right, is labeled “You are ready for discharge to home when..”  This is a cruel segment of the chart because it lists things the patient must do or be able do before he/she can go home. No fever for 24 hours; eating and drinking by mouth or by G-Tube; pain is controlled without IV medications; and specifics to your child.  This last item on the list is the catch-all clause that states, in essence: You can go home when we say so, and only then.  Since I know that we won’t be going home any time soon--next Wednesday at the earliest--I use this area to chart what Lauren has had to drink.  The more she drinks during the day, the less she “drinks” via IV at night, and thus, the less she wakes me up to pee in the wee bitty hours of the night.  There is also a note to service providers that Lauren needs assistance when ambulating.  She needs her walker or the wheelchair we have borrowed from the hospital.  Insurance cancelled the rental wheelchair we were using, so now we have our own.  Out. of. pocket.

Lauren’s temperature has been an issue since we arrived on Wednesday.  She has spiked a fever each and every day we’ve been here.  HemOnc protocol calls for labs to be drawn for blood cultures.  So, somewhere deep in the bowels of this hospital are half a dozen petri dishes, each trying to grow something we hope Lauren doesn’t have.

At rounds this morning, the orthopedic team decided to have Lauren’s lungs x-rayed to see if something (other than her lungs) was there.  Following the adage, “No news is good news,”  I held to the belief that everything was fine.  Lauren’s chest x-ray was around 3pm today; the images were made available to doctors immediately, and we still hadn’t heard anything near bedtime.

I received a call, however, to say that the doctors wanted to talk to me about the x-rays.  Heart in throat.  My mind went into negative zone and I started to worry.  Hours later, a peppy young man advised that while they thought they “saw something,” (viral striping) the 2nd opinion was negative.  That said, how could I not worry?  Lauren has been doped up (Sleeping? Getting sicker?) all day.  She has cancer that could, potentially, spread elsewhere.  She has low energy and a bum leg.  She’s been on oxygen at night for three nights running.  Just those things are a lot to take in.  But the nurses helped me take in what I could.


The watching of nurses has become a bit of a hobby.  Delightful, spunky, thoughtful, friendly, and kind-hearted--those scrub-wearing angels.  I try not to stare outright, but I can’t help focusing on these interesting people.   In fact, if I had been Dr. Seuss at this hospital my book would have been titled One Nurse, Two Nurse, Old nurse, New nurse.  Really, how would hospitals run without these folks?  Seasoned pros breeze about the room with an efficient air, chatting or not as they check vitals, administer medications, empty commodes, fluff pillows, and adjust patients for care and comfort.  During the day, new student nurses shadow their mentors, eager to practice skills on live patients after years (sometimes mere semesters) of textbook paper patients.  These freshly scrubbed faces most often wear a mask of academic competency with a hint of nervousness just around the eyes.  They carry notes in their pockets, ask qualifying and procedural questions, and look toward their mentors for approval.  Their eyes inquire: Am I doing this correctly?

Newbies at Seattle Children’s Hospital wear crisp purple scrubs that identify them as University of Washington nursing students. Nurse kids from other schools wear blue or red scrubs.  These new nurses smile a lot and often look too much like teenagers for my taste.  It strikes me at odd times: When did I get so old?  When I’m looking at some of these young pups.  When I see yet another gray hair.  Even at the grocery store.  Picking up a prescription a few weeks ago, I noticed a sign at the register: YOU MUST BE 21 TO PURCHASE ALCOHOLIC BEVERAGES.  I’ve seen signs like this hundreds of times before as part of an expected checkout landscape, along with the register, cashier, and donation-to-some-kind-of-cause bucket.  But that day I took notice.  That day I did the math (on my iPhone calculator, of course!).  Did you know that kids born in 1991 can buy booze this year?  1991!  I still have blue jeans from the 90s.  And some of these same kids, dressed in their rainbow of nurse outfits, now care for my daughter.  How lucky am I?  In a word: very.

CPM, How We Loathe Thee

Should have been an easy day.  Not.

Lauren met her old nemesis once again: the CPM machine. The continuous passive motion machine bends the knee after a surgical procedure to avoid stiffness and breakdown/avoid scar tissue buildup.  It’s a heavy, awkward machine that was certainly designed by Satan, torture engineer extraordinaire. In addition to all the other hospital "musts," Lauren has to spend a large amount of her time strapped into the CPM--2 hours on, 2 hours off--around the clock.  When she’s not in the CPM, she’s strapped into an industrial brace with a secondary boot that forces her foot into a 90 degree angle.  Super comfy and an awesome recipe for restful sleep.  Combine this with nurse visits for vitals and medications, doctor visits, machine alarms, and answering the call of nature when the body is in pain… and you can imagine how rough Lauren’s day has been.

Fortunately, Lauren has had some lovely visitors today.  Thank you Lynette (with a gift box from Jamie), Dr. Hawkins, Audrey from Make-a-Wish (bearing french fries, a vanilla shake, and rainbow socks!), Darlis and Katie, and Jessica (cute bracelets). We watched A Little Princess and enjoyed the time bending and not, while some of us counted dust motes and tried to nap.  Last but not least, Dad came by with movies and a rescue order from bad hospital food: sour cream mashed potatoes.  What a great guy!        

Out With The Old

A wild and crazy day yesterday.  We checked in for Lauren's surgery at noon.  She decided on the "rootbeer flavor" for her drift off mask with the sleepy medicine.   And then we waited... and waited... and waited.





Fortunately, we were able to wait with the family of Lauren’s friend.  Nicole is another girl at the Ronald McDonald House who had her “big” surgery yesterday.  So while it wasn’t fun to be there, it was nice to pass the time in the waiting room with friendly faces.

At 7:30 p.m. we received a call from the OR to tell us that the old, broken plate was out and new hardware was still being installed.  It sounded strange to me, like they were renovating something other than Lauren’s leg.  They “installed” thicker, longer plates and new screws.  The new metalwork goes further up her leg toward her hip, so her scar will be even longer and “cooler,” according to Lauren.  She’s such a positive girl!  True to form, she woke up early-ish in the recovery room, but we still didn’t see her for hours.    

Dr. Chappie, her primary orthopedic surgeon, came to chat with us around 8:00pm.  He looked like someone had worked him over with a tube sock full of oranges after pulling an all-nighter.  His face was drawn, something close to a tired grimace.  He had been working side by side on both girls (Lauren and Nicole) for hours on end.  I was a little frazzled, though.  Chappie spent only 20 seconds or so with us.  Seriously.  He was still working on Nicole and broke free to give us a quick status.  In addition to the new plate and reinforcing screws, they removed her pins that secured the old plate to the bone nearest her knee.  However, they replaced the pins with screws that, according to Chappie, will stay in.  ?!?  We don’t know if this means that he has given up on her growth plate on that side or not.  In his delivery, tone, and body language, the surgeon didn’t allow for any questions.  He told us curtly that he’d come see us Friday.   We’re using the time to write down a long list of questions.  He’s not going to get off easy from this set of parents.  J

A little later we received the hospital room number, an overflow room for orthopedic surgery on the 4th floor of Giraffe building. In the parking garage, we ran into Marsha, who came to visit Lauren after work.  Great timing!  We loaded up all the stuff for our hospital stay and made ourselves at home in the room while we waited for Lauren to come up from recovery.  It’s not so bad to be in the overflow room.  It means that the rounding doctors come a little later, after they’re finished with the 3rd floor.  That means we don’t have to face the drove of docs until about 6:30 a.m.  (Usually it’s between 5:30 and 6:00 a.m.—too damn early in the morning.)  Another bit of good news was seeing that the charge nurse was able to room Lauren and Nicole together.  Although we had requested this arrangement, we were told that rooms were tight.  Both girls were expecting an infant roommate.  Fortunately, they were able to put the babies together so that the girls could be together.  Definitely a quieter arrangement this way for all involved.

Lauren arrived around 10:00 p.m., awake but a little groggy.  The first order of business was to put on the piggy hat.  It’s like a comfort companion, a furry pink hug for her head.  She was snuggled up with another big stuffed bunny, so it looks like Babs and Willow (her other stuffed rabbits) will have company.  She hasn’t named the new one yet, but it’s a lop-eared bunny with plushy reddish brown fur.  The transport nurse told us that Lauren had received extra fluids and some blood products during surgery.  She was also on oxygen.  Marsha kept us company for several hours.  I say “us,” but of course Lauren was out after about 10 minutes in the room.

Sometime during the night, Lauren spiked a fever of 103.  They drew labs and gave her something to bring down the temperature.  She was still at 103 when they came back to check her vitals an hour or so later.  They told me that the fever could be surgery-related or as a result of the blood she received during surgery.  Regardless, it made for a restless night.  Lauren has a PCA machine (patient controlled analgesia) filled with morphine.  When she needs it, she pushes the button and gets a controlled dose for her weight.  If the PCA doesn’t do it, they have a few other things to give her for more acute pain.  She had a few doses of Ativan for muscle spasms last night and two “up and above” boluses of morphine.

I drifted off and came to a few hours later when the doctors showed up for rounds.  Surprisingly, they didn’t have much to say and couldn’t really answer any questions.  I’m sure Chappie will show on Friday.  If he doesn’t, I’ll greet him with a real tube sock full of oranges.  (Not sure what I mean about the oranges? Here’s the bit from Urban Dictionary: “A sock, preferably a white, tube sock variety, filled with oranges. Two oranges are best, with a maximum of three per sock. The sock full of oranges is useful for beating someone because it will not leave a bruise. Used by the marines for punishment,”).   So the doctors who showed up did a routine check: asked her to wiggle toes, checked her chart, looked at (but didn’t unwrap) her leg, and reviewed the surgical notes.  I could have sworn that it was a middle-school tour; not one of the doctors looked old enough to drive.

I crashed for another few hours, waking with a bunny to the head.  Lauren was up around 8:00 a.m. and surprised me with her stellar aim.  She asked for my phone, but passed out again after I gave it to her.  I slept for another hour or so.  When I woke up, Lauren was chatting up her nurse.  I grabbed my phone and was shocked to see that she had posted something to FaceBook:

I finally woke up completely.  Nurse just gave me a great dose of pain meds.  My leg hurts real bad and feels like a hundred pounds. I got a good amount of sleep, sadly mom can’t say the same.  Poor mommy.  L

She’s thinking of ME.  What a lovie.

Nicole woke up and the girls were able to chat for a bit.  The other girl was worried because she couldn’t move her leg, but Lauren assured her that it had to do with the epidural.  “Trust me,” she told Nicole, “you don’t really want to feel your leg right now.”  After just a few minutes, both girls were dozing again.

And so here I sit, still in my pajamas with something ridiculous on the TV.  Lauren was flipping randomly before she fell asleep and has a death grip on the remote.  Lord help me, it’s The 700 Club.  Pat Robertson is interviewing a woman with a dog.  He’s got a ridiculous grin on his face.  As a sleep-deprived observation, I notice that both Pat and the dog have impressive jowls.  I think I will try, again, to turn off the TV.  If this doesn’t work, my only defense will be to keep the volume at zero.  One thing is certain: The 700 Club will inspire some reading on my part, instead of falling into a sitcom or crime show.

More Surgery Fun

Big surgery to repair the leg is tomorrow at 1pm. We just left "the room" with Dr. Chappie and crew. To stabilize the break until the surgery, they put Lauren in a full leg cast.  She chose neon green, in case you were wondering, then wrapped it in a thick layer of ace bandage.

They don't want that sucker to move at ALL until the surgeons can get in to fix the damage.  The shadow on the xray might be new bone growth, but they will check it out when they're in there. Until then, Lauren is hiding out. Can't say that I blame her.

Achey Breaky... Leg

Please send happy, healing thoughts to Lauren. She's been complaining of leg pain in her hip and in her lower leg near the knee. Today's xray shows that the plate holding her new femur in place has snapped in half.



Not sure how it happened, but L is devastated. This means a delay in chemo and another major surgery. We kept telling them that her leg looked crooked, but no one believed us. They attributed the pain and "crookedness" to the muscle that was removed with the tumor. No wonder she's had so much leg pain; the pieces have been rubbing on her anchor bones and the surrounding tissue, and the new bone has had no support. This is a MAJOR setback.