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.