Our
Journey:
Avalon's Army of Angels
Monday October 19, 2009
Day 5 of Hotel Hades
The morning started off rough.  One of the current Neurosurgery residents began yet another
day at 6:45.  He beats on your door, then comes in and "Good Morning!"s until you shake
yourself violently from your hard-fought-for slumber.  He then proceeds to ask INANE, useless,
couldn't-you-have-bothered-to-look-at-her-chart questions, all while not listening.  The final
insult today, was, "Do you mind if I wake her up?"  Knowing full well that it doesn't matter
what I
mind
...I said, "Go ahead."  

Dr. Wonderful then proceeded to say, "Avalon.  
Avalon!  Avalon!!"  The third shout
was accompanied by a rather vigorous leg shake, which finally roused my dead-to-the-world
short person.  Now one would think that if a Doctor goes to that length to rattle a kid awake, he
intended to due a full evaluation.  Well..."one" would be wrong.  In fact, "one" would be so
wrong, it's laughable.  Dr. Dorkus shrieked my daughter awake to say, "How do you feel?"  
Are
you freakin' kidding?!  
Ummm...NO, I'm not.  "How are you?" was really all he had.  If it's
possible to give someone a "you're an ass" look while only using 2% of your grey matter...well,
Avalon managed to figure it out.  Out of one partially opened eyeball, she gave Dr. Dingleberry
a look that said volumes (most of which are not printable) and said, "Fine".  After which she
rolled over and firmly planted herself into the bed.  

Sometimes, residents should be shot.  Then beat with a stick.  Then potentially drug around
behind a team of wild horses.  Then....whacked stupid with their ridiculous little white coats...  
I'm just sayin'...

The morning got significantly better when one of our all-time-most-beloved nurses, Sylvia,
walked in.  She came through the door way announcing, "Honey, I'm home!"  I seriously felt all
of me relax and smile....  I just adore Sylvia!  A) She makes me laugh.  B) She's a damn great
nurse.  And C) she loves Avalon.  There is no better combo on the planet.  After we left the J-5
family, I thought we'd never find this again.  I was dead wrong.  Sylvia is a dream come true and
one of my greatest sanity savers when we're here.  

The morning was really rather insane.  The residents and one of the NP's were still convinced
Avalon was having surgery today.  After spending all of Sat and Sun telling the
they-think-they-know-everything residents they were absolutely WRONG...they prepped Avalon
for surgery anyway.  She was NPO after midnight (no food/drink for the non-medicals out there)
and she had the first of her pre-surg hair washes last night.  Shortly after Sylvia came on shift,
she came in with another nurse to prep Avalon for the IV team, because they needed
pre-surgery blood work.  A regular CBC (regular blood counts) can be done with just a finger
stick.  But the anti-coagulent studies you need before brain surgery requires much more blood,
so it has to be a vein stick.  

Poor Avalon, after Friday's disastrous round of blown veins and screaming pain, she took one
look at IV supplies and freaked out.  Mind you, Avalon's 'freak outs' are reasonably mild
compared to most kids.  She doesn't scream or wail, she just looks TERRIFIED and huge tears
begin to fall.  She's hasn't been like this since the first week she was diagnosed with cancer.  
She acclimated pretty quickly to being a medical kid, and takes most procedures in stride.  But
more and more, needle phobia is growing.  

I've never cottoned to the notion of giving in to a screaming mimi.  I don't think you do a child
any favors when you coddle them or support them in their shrieking.  We've always told Avalon
it's OK to say, "Owie", "It hurts", "I'm scared", etc...but endless screaming isn't acceptable.  We
hold her, distract her, kiss her, and talk calmly...but we do our level best to not get worked up
around her, no matter how scared/upset/sad we really are.  The calmer we have always stayed,
the calmer she has.  In the end, it's been a very useful approach.  Avalon has bravely faced
down several procedures/tests that would paralyze most adults with fear.  We've tried to give
her the tools to cope with what will, most likely, be thrown at her for the remainder of her life.  
Endless terror...seems like nothing but a horrible, cruel idea.  

All of that being said, we are beginning to lose the battle with needles.  During chemo, Avalon
was the queen of being accessed.  By the end of it, she didn't even use numbing cream on her
port.  She hated the plastic bandage that you had to put over the cream, so she would opt for
being accessed with no topical anesthetic rather than having that bandage pulled off.  Avalon
is such a "bad stick" that we actually kept her subcutaneous infusion port for nearly a year after
chemo ended.  With all of the LPs, MRIs and additional surgeries she had, the port was a lovely
'tool' at our disposal.  The problem is, ports are a constant liability.  They pose a permanent
hazard for life-threatening  infections, and in and of themselves, can lead to extra hospital time.
 Besides, they eventually time out as a child grows, and they are used often.  The time came
that our oncologist put his foot down and ordered it out, because he felt it was no longer safe.  
No more port meant vein sticks for large labs and IV access.  No more port meant way more
needles...and this isn't going well for us.

In all fairness to Avalon, she handles vein sticks for labs beautifully.  Rheumatology is the
quintessential blood-letting department.  You'd think it would be Hemetology...but it sooooo
isn't.  Dr. Spencer, Avalon's rheum. has dreamed up blood work that Heme has barely heard
of.  (My all-time favorite is a Russel's Viper Venom test!)  Every time Rheum orders a round of
blood work, it's a trip to the lab, and a vials upon vials of blood.  The phlebots in the lab never
have an issue, and Avalon is a trooper.  Terror comes in the form of IV access.  First of all, the
veins IV access require are smaller, and much more painful.  Second, they love to blow on
Avalon.  

The point of all of the above is that when Sylvia walked in this morning with another nurse and
IV/access equipment...full blown panic hit Avalontown.  We tried to explain to Avalon that she
only needed a vein stick to get pre-surgery labs.  The second nurse tried to explain that she
would only poke Avalon once, and that if she couldn't get blood, she would call the IV team.  
We
tried to explain all of that, but it didn't matter one teensy tiny little bit.  The tears flowed and
the confidence 'go-ed.'  (OK, so I'm stretching for that rhyme...)  Avalon was petrified.  

After waiting for the numbing cream to take effect, the nurses came back to make the official
attempt.  Meanwhile, I had continued to argue vehemently that surgery was not going to
happen.  They had pestered one of the nurse practitioners, and she stuck to the
she's-going-to-surgery story.  I still didn't believe it, and asked for the NP who really knows
what's going on with Avalon.  While we waited, they tried to get blood.  After rolling the vein a
bit, they did manage to get a return, but the rolling was very painful, and Avalon jerked a little
too hard for us to be able to fully control her.  Truthfully, the jerk was pretty much involuntary,
and was quick and short.  But fast and furious is difficult to control...and the needle pulled free.  
The nurse stuck to her word and gave up after the first try, leaving to go call the IV team.  
Avalon still whimpered for a while, anticipating what would happen next.  

Not terribly long after the ill-fated vein attempt, the door opened to reveal our buddy, and ultra
wonderful NP, Carrie.  OK, I admit...not my best moment.  I greeted the poor woman with a,
"Carrie...
what the hell?!"  She looked at me like I'd lost my minuscule mind, and asked what on
earth I meant.  I told her they were prepping Avalon for surgery.  She said, "Oh, they made her
NPO?"  I said, "No...they made her NPO, did her pre-surgery hair wash, and are calling the IV
team for lab access."  Carrie was as dumbfounded as me.  The whole idea was bat-crazy.  
Carrie left to call Dr. Kosnik and we waited.  

Funny enough....Carrie soon returned with the exact thing I'd been saying since
Saturday...Avalon
 was NOT going to surgery today.  If I'd have had a bullhorn, I would have
probably yelled something semi-witty and not even remotely respectable up the rears of the
residents.  Their outright misinformation and lack of common sense was reprehensible.  Hence,
the issue I have with residents...they think they know waaaaaay more than they really do.  The
good ones KNOW they have much to learn.  Its the know-it-alls that irritate the short hairs right
off of me.  

After the surgery/no surgery game was finally played to conclusion, it was time to sit back and
relax a bit.  The day became a marathon of wait and worry.  Wait to see what Dr. Kosnik's plan
is, and worry about what comes next.  

The good news is, Avalon is definitely better.  The leak must finally be healing, because Avalon
is cheerful and friendly again.  In fact, she's feeling better enough to be bored off her rocker.  
Seriously, 5 days flat on her back in the hospital....she's going nutso.  You know the pain is
better because she's begging to sit up.  Before, she'd beg you to not touch or move her.  This
is a grand improvement.

It has, however, been a hard day.  All the way around, the kids are miserable.  Because of
H1N1, the hospital has been declared a 'kid-free' zone.  No one under the age of 13 can go on
the patient floors.  That means Ambrosia and Anam can't come see sissy.  Neither can Daddy,
because he was bed-ridden on Tues while Avalon was having the LP done.  He spent the day
battling a high fever and aches.  He went on to work the next day, but he was certainly no
where near healthy.  The hospital is asking anyone who has been sick within the past week to
stay away, so even Daddy has been off-limits this stay.  It's been awful.

This afternoon Avalon wanted to talk to Ambrosia.  We called home and they got on the phone
together.  It took about 1 minute for the tears to start.  Avalon was in body wracking
sobs...telling her beloved sissy how much she missed her and how much she wanted to come
home.  Sissy held it together on the other end of the phone, but not by much.  Considering how
much Ambrosia cried when I was home on Sunday, I was dutifully impressed by how well she
hid it.  Basically, her love and concern for Avalon's sadness allowed Ambrosia to override her
own grief.  Mommy's heart was in her throat.

When Avalon was too upset to talk anymore, she handed the phone back.  This led to a
conversation between Aurora and I.  Poor Aurora, she's taken on the weight of the world this
week.  She is agonizing over whether or not to go forward with her birthday sleep over on
Saturday.  I said, sure...please feel free to have it.  I know the girls, so does Dad, we love them
and they are always welcome.  You don't need me.  That led to very surprising tears, and
possibly the nicest thing any teenage girl could ever say to her mom.  Aurora told me, "I don't
like you sometimes, but it won't be the same without you.  I want you to be there, or it won't be
right."  Yep...time for mom tears now.  Aurora went on to tell me how empty the house was
without Avalon and I - that she was miserable too.  OK, 4 for 4...all of us girls sobbing.  
Considering every few times I talk to Anam, he says, "I MISS you mom!  When you coming
home?"  No need to expand on that.  When a three year old little boy tells you he loves
you...there isn't much more needed to melt your heart and rip what's left into a zillion pieces.

I think the worst part of this round of Hell has been the isolation.  My online friends have been
AMAZING.  They comment on FaceBook and email often to just say, "We're thinking about
you."  But some of our dearest friends have been sick, so they can't visit, and
basically...everyone has their own lives and garbage going on.  Honestly, this dog and pony
show is old news.  Avalon has done more hospital time in the past 5 years than most people do
in a lifetime.  Heck, she's done more time than most
families do all put together.  It's old news
to everyone but us.  I don't blame a soul.  In fact, truth is, I've been pretty quiet this time.  This
is just sooooooo huge, I can't manage to wrap my brain fully around it.  My heart is in pure hell,
and I'm honestly not dealing well.  I vacillate between not wanting to talk to a soul (including
Nick) and being desperately sad that no one is here, spoiling my hurting baby rotten.  I did
specifically reach out to one source before we came in house, and another one once we were
here.  One group just never answered, and the other said this week's schedule was too busy.  
Feeling a bit foolish.

I have to give a shout out here, though.  Tuesday night, I stopped at the Kids N Kamp
headquarters to tell them how bad the LP had been.  They buried me with toys for Anam, and
I'll never be able to thank them enough.  Poor little guy...his birthday was that day...and I hadn't
had  the chance to spoil him or even go shopping.  Bev and Bonnie knew my heart was
breaking, and they did their level best to help.  Little did I know then that we'd aim in here on
Thursday, and still be here today.  KNK stuck to their word, and helped when I needed it
desperately.  I hereby publicly thank them for that.

I also want to give a shout out to my dear friend, Jessica.  She has turned herself inside out to
be thoughtful and helpful.  She has texted and called Aurora, offering help and begging to be
used any way Aurora needs.  The thing is, Aurora knows the offer is as genuine as they come,
and is seriously thinking of taking Jessica up on it.  If that wasn't enough...she also came here
today - to bring food, cards so I can buy food from the cafeteria, and to do Reiki on Avalon and
I.  Reiki is a healing art of energy movement.  A few minutes with Jessica, and Avalon and I feel
so relaxed...it's like a week at a spa.  Do you know the very best thing?  We all know Rourke
and Jessica love us.  It's the very best medicine on the planet.  The lunch cards and Wendy's
sandwiches and Frosties were great...but the hugs and pure, unselfish support were truly
priceless.  Jessica, thank you for knowing EXACTLY what I needed today!  

As with every day since our arrival, one of my biggest helpers has been Joy, AnnaMarie's mom.
 Anna's surgery was today, but Joy still managed to brighten my day with smiles and most of
all...understanding.  Our kids are so different from what people expect.  They LOOK good most
of the time.  We both
HATE hearing that.  We know they look good, they do.  The problem is,
you can't SEE pressure surrounding the brain.  You can't see their eyes as they are going
blind, their ears as they fight tinnitus and can't hear you, their brain as it begs for mercy, or
their minds, as they bend to pain we can't imagine.  You can't SEE any of that...so people
presume it isn't important or valid.  
Why support a little girl who looks so cute?  Why worry
about her?  She's done well in the past.  She'll be fine.

We know people sometimes think that way.  Heck, we battle doctors that think that way.  It's
easy to get lost in the obvious.  It's true, Avalon isn't bald from chemo anymore...but trust me, I
vote this is way worse.  I don't say that easily.  I watched my 17 month old go directly to Hell...do
not pass go, do not collect $200...  But cancer had an endpoint.  This?  This nightmare will go
on forever...ending in only the worst possible scenario.  It's far too much for a mom's heart to
contemplate some times.  And quite frankly, far too difficult to figure out how to explain.  I'm
sure I've beleaguered the point in the past few posts, and I'm sure I'll do it more over the
coming weeks.  If I bore you, I'm sorry.  But when all is said and done, I have always maintained
I will be 100% honest in all that I write.  To be less would be distasteful.  How can anyone
believe my appreciation and celebration, if I'm not equally as honest about my frustrations,
disappointments, and fears?  Well, they can't, so blatantly transparent is the path I choose.  If I
say I love and appreciate you...I
mean it.  If I say my heart hurts because someone ignored us,
yep...that's the truth too.

After Jessica left, the remainder of the day was spent chatting with nurses and PCAs and doing
crafts to keep ourselves occupied.  During my 'retail therapy' jaunt the other night, I picked up
lots of Halloween foam sticker crafts.  It's really hard to draw/color/paint when you're lying down.
 But we managed to have Avalon use a glue stick and peel and stick foam shapes pretty well.  
We made witches, vampires, and pirates.  Avalon made an amazing sticker picture for Anna
too.  I'll post pictures here when we get home and I can download from the camera.

Finally, late in the evening, Dr. Kosnik made his much-anticipated appearance.  He came in the
room surrounded by his resident swarm.  Dr. K is well known for his sweeping arc of speed, as
he deftly cruises in and out of patient rooms.  The nurses have secret ninja tactics for keeping
him in place for more than a millisecond if a parent has a question.  Me?  Sure, I use the
general army stealth campaign, but I have my own secret weapon.  I make him laugh.  Tonight,
I told him what I really wanted to do was run past him and block the door.  When he said I
couldn't keep him, I told him to watch out...I was a large woman and I felt confident I could take
him.  He grinned, and I got more than half a breath to pry answers out of him.

Basically, what I had been arguing with the residents was dead-on.  There is no way Dr. K will
take Avalon to surgery to
reduce pressure, if there is any chance her spine is still leaking.  It
seemed intuitive to me all weekend.  Apparently, I'm not educated enough to be a total dork.  I
suppose I'll have to leave that up to the residents.  Dr. K wants to leave Avalon here and flat for
several more days.  He said she had to stay totally flat tonight, but could be slightly up for short
periods tomorrow, to see how she tolerates it.  He wants her to be 100% sealed and OK before
we head to surgery.  As per his schedule and her healing, Avalon's first surgery will be either
Fri or Monday.  If last time is any indication, she'll be here several days post op.  Bleck.  

One of the things Dr. K said that was slightly unnerving was actually more of a toss away line to
him.  He leaned over Avalon's bed and told her, "We have lots to work to do before
Thanksgiving.  And we have to get to it, I promised you Trick or Treat."  On one hand, could I
adore him any more?  He really does acknowledge that Trick or Treat is vitally important to a 6
year old.  On the other hand...
THANKSGIVING?!  Oh holy moly...did I really hear that right?  
ACK!

As Dr. K beat a hasty retreat, I threatened to body slam him in the hall, if he didn't answer my
last question.  So...when and what is the BIG surgery?  His answer was first, that I couldn't get
him, and second that he wouldn't go there until she was 100% healed and healthy.  He grinned
at me and told me to trust him, "I
AM the doctor."  You know what?  I do.  I also think we're on
the same wavelength.  Only time will tell.  For now, I understand that he has an order of
operations (every pun intended) and I honestly trust that.  Who knew?  I have not only learned
to understand Kosnik-speak, respect his wisdom, and trust his judgement...I really do love the
Big Guy.  Wonders never cease.  

On that note...I'm off to bed.  I'm tired.  I mean I'm really, really,
exhausted.  I haven't done a
darn thing physically in days, but it's not mere gymnastics that can drain a body.  I'm here to
report mental assault can be physically demanding.  I feel like my limbs are made of lead, my
skull is full of oatmeal, and my heart weighs a thousand pounds.  Every fiber of my being is sad
to watch what my daughter is enduring, and pained to know I'm helpless to fix it.  I miss my
other babies so much it hurts.  I know they are only 40 minutes away...but they're not
touchable, and that's not how I like to live.  I enjoy every second I'm with my children, even
when I'm threatening to velcro them to the ceiling.  They are my purpose, and without them, I'm
more than a bit lost.  I admit...I've even been closing down from talking to them this week.  If I
stay isolated with Avalon, it seems to make the "missing" part of this nightmare equation
bearable.  Nutty, I know.  But right now...I'm in survival mode.  

So...off to bed, for interrupted, uncomfortable sleep on a Chinese torture device that is cleverly
disguised as a couch/bed.  Oh yeah...Chez Children's is so luxurious......