At some point during the bath, Avalon bumped Barb, or did something she felt the need to
apologize for.  She instantly said, "I'm sorry, Grandma."  I was mortified!  I apologized to Barb,
and explained that Avalon had spent the evening with her grandmother, so I'm sure that was
the cause of the slip.  Barb said no apology necessary.  Then, she leaned down, and quietly
told Avalon, "Not Grandma...Nan-nan.  That's what
my grandkids call me, Nan-nan.  You can
call me that too."  Avalon happily agreed, and I fell head over heels for a wonderful lady.  
Sometimes, a gentle heart can heal a thousand wounds....

You see, I had come to this bath with a heavier heart than I can remember in a long time.  My
afternoon of 'freedom' had been painful and awful.  I had left the hospital carrying our large
suitcase.  I was so distracted, that I didn't even realize until I was 3/4 of the way to the car, that I
was wearing my slippers instead of my shoes!  I was so tired, I decided I didn't care.  I would just
go shopping in my slippers, and people would have to get over it.  

My first stop was cheerleading class.  I wanted to tell the kids where Avalon was, and what was
going to be happening to her.  I wanted them to know how sad she was to miss them, and how
much she hoped she'd be able to come to the big final cheering event at the local high school.  
I didn't want her to show up in her wheelchair, with a shaved head and wig, and scare them all.  
The thought of it killed me.  I know people who have done this when cancer kids are returning
to dance or to school, so I knew I was on the right track.  What I didn't realize, was what an
effect this 5 minute talk would have on me.  

The kids, coach, and parents were great.  I had pictures of Avalon's scars from last year, so
they could see them if they wanted to.  Kids are endlessly curious, and usually want to know
everything.  We've learned through the years, just be honest with a child, and they can process
things way better than most adults.  Sure enough, the kids were great, the adults were pretty
terrified.  

I only stayed a few minutes, then headed back to the car to start my errands.  I have to say, I
completely lost it.  I don't mean wept, or cried hard....I mean
I lost it.  I called Nick in the middle
of body-wracking, mind-numbing sobbing.  It was all so....HUGE.  The unfairness of it all.  Here I
was talking to perfectly healthy normal 5 and 6 year olds.  Kids whose greatest health problems
have been ear infections and skinned knees.  How can they or their parents understand that
Avalon has cheated death several times?  How can I explain how angry I am that cancer wasn't
enough?  Damn it....wasn't it enough to rob Avalon of her toddlerhood?  Does she have to lose
being a little girl too?  I mean...it's so UNFAIR.  This was our first, our FIRST attempt at being a
real family since Avalon was diagnosed.  We enrolled Ambrosia in soccer and Avalon in cheer.  
It was hard enough to watch Avalon fight off the pain, and periodically have to give up and sit
down.  But
this?  This is unreal.  C'mon...she faces daily pain and exhaustion in her legs, arms,
and hands.  Does she have to fight this too?  It's not right....

I sobbed the entire way to the stores.  My first stop was Halloween USA, trying to find the
colorful wigs Avalon wants.  Last Halloween, there were scads of bright, colorful wigs.  This
year?  Everything was realistic, or super grown-up looking.  I scoured the store, desperate to
find the yellow (not blonde) wig Avalon has begged for, or the lime green one.  I settled for a
few, a long light blue one, a short, punk-looking hot pink one, a light pink one.  But they were
stupid expensive, and unforgivably cheap in construction.  None of the wigs will last long,
they're all poorly made.  But, I was desperate and I was limited to what was available.  It's not
hard to imagine, I cried my way through the entire store.  I'm so jealous, all these silly people
wandering around, planning Halloween fun.  Why doesn't my daughter get to do that?  Why
does she
have  to wear wigs?  Why does she have to do this AGAIN?!!  It's not fair....

From the Halloween store, I moved on to Jo-Ann Fabrics.  I hoped they might have some neat
wigs, but they didn't.  I did find some of the foam-sticker crafts I was looking for, so that was
great.  Of course, it broke my heart into 1000 more pieces, to pass up wonderful things,
because I knew Avalon doesn't have the strength, or even on a good day, the dexterity to enjoy
them.  Where is that acceptable?  Why can't my little girl be like the one I saw drooling over the
Halloween hair barrettes?  My daughter will lose what little hair she has...AGAIN.  It was
suffocating it hurt so bad.  I survived the demons by wrecklessly spending money on things I
thought might make Avalon smile.  It was stupid.  We haven't had any income in months.  (Nick
has been on long-term projects)  Money is so tight, we would be homeless if our landlords didn't
love us.  We'd be starving, if there wasn't such a thing as food stamps.  We did NOT have the
money to spend on wigs or crafts, no way, no how.  Ask me if I cared.  It wasn't about the
money...

My next stop was Lane Bryant.  My one, ancient, decrepid bra had broken to the point of pain.  
When I took it off for bed last night, it was covered in blood, the broken underwire had gauged
enough of a hole in my breast, I'd been bleeding all day and hadn't realized it.  My heart pain
had over-ridden my chest pain.  Who knew that was possible?  

Anyway, before I went in to LB, I called my parents to check in on Avalon.  There I stood, on the
sidewalk in front of the store, sobbing.  I told my mom she'd better listen closely for the phone.  I
was shopping with my hair in the same messy bun I'd slept in the night before, no make-up,
wearing a hospital ID and my slippers.  I'd already cried my way through two stores and was
waiting for someone to call the authorities on me.  
9-1-1...what's your emergency?  "There is
this crazy lady with a dazed look, crying uncontrollably in the Halloween aisle.  Can you please
come remove her?"
 I was attempting to make a joke, but honestly, I wouldn't have been
surprised if it had happened.  Let me tell them what's going on in our world...see if they could
handle it any better.

After buying a bra that wouldn't injure me, I headed to Target to pick up a few food items, like
granola bars, to take back to the hospital.  I also needed to get another pair of pajamas for
Avalon if I could.  Button up pjs are the best kind, because you don't have to pull them over her
head after surgery.  Sure enough, Target came through for me, I actually found her two pairs.  I
also managed to find the Bratz doll I owed her.  And, I found some fun, inexpensive Halloween
light up decorations.  Nothing brightens a hospital room more than things that light up.  With two
plug in pumpkins, a battery-operated color-changing ghost, and new pajamas in my cart, I was
ready to cry my way through check-out, and on to home.  I didn't even know if I had the money
in the account to cover what I bought.  I figured they'd tell me at the checkout if I had to give it
all back.  Wow, wouldn't that have been fun?

From Target I finally headed home.  Strangely enough, I happened to pass Nick and the kids as
I drove down the main road the stores were on.  Nick was dropping Aurora off at the movies.  I
had encouraged her to go and be a big girl, only to find out later I'd hurt her feelings.  I thought
I was being big-hearted and generous, sending her out to have fun as a reward for helping out
so much this week.  Turns out, she thought I didn't mind if I didn't get to see her.  Lesson
learned, speak more clearly, and make sure your teenager really understands you...their
feelings are as soft as the 8 year old's.

Because we crossed paths, it gave me a few minutes of alone time at home.  I had time to
unload some of my loot, and to get in the shower.  As soon as they got home, Ambrosia rushed
up to talk to me while I finished getting clean.  I think it took about 2 minutes before she started
crying.  She and Avalon are so connected...  We call them Fric and Frac.  They aren't complete
without each other.  Not being able to see Avalon is killing Ambrosia, and it's absolutely
unbearable.  How do you soothe a broken heart when yours isn't any better?  You don't.  You
cry with your child, and let them know you fully understand, and are sorry their heart is aching.  
No, it's really, really not fair...

Anam had fallen asleep on the way back from dropping Aurora off, so he snoozed through my
re-packing.  We woke him up long enough for me to steal a hug and a kiss, then he dismissed
me and went back to sleep.  I hugged the stuffing out of Ambrosia, and went on my way.  
Normally, I would say my "Merry Way"...but it wasn't, and I certainly am not.  

When I returned to the hospital, I was greeted with the poo news, the IV news, and soon after
faced the  bath fiasco.  So, believe me, when I tell you that one kind act, one gentle caress can
help heal 1000 heart-wounds...I'm serious.  "You can call me Nan-nan" was priceless to me.  
Barb's gentle voice made Avalon happy, but it gave her mom the strength to make it through
one more day.  

Thank you, Barb,  You weren't 'fair'....you were GLORIOUS....
Our
Journey:
Avalon's Army of Angels
October 18, 2009
Sunday, Day 4 of captivity
Actually, for the first time, I have better news to report this morning.  Avalon woke up because
she needed to go potty.  This may not be newsworthy for most people, but for a dehydrated
basket case...we celebrate the occasional toilet trips.  Better yet, going potty didn't leave her in
agony, a good sign that we may finally have a bit of a seal starting to form.  

OK, so Avalon isn't in
agony, but in all honesty, she isn't exactly peppy.  She is complaining
about her back hurting.  Since there is no miserable headache to pair with it, we are going to
try just Toridol.  After all, the more we can hold off on the morphine, the better for her motility
issues (morphine slows movement of food through the GI tract).  So, Avalon started the day
with Toridol.  She's still not eating, but she did ask for more chocolate milk.
I should have known it was too good to be true.  :-(  Damn it anyway.  

After having a pretty happy morning, Avalon was taken down to x-ray for an abdominal film to
help GI assess her.  Since she produced a few "poo rocks" last night, I'm hoping she'll be less
full than we anticipated.  Anyway, the trip down and up was pretty uneventful.  We had some
giggles once we were back in the room.  Avalon's bed refused to go back 'down'.  To transport
in a bed, they raise the bed height so it's easier to push.  Once you're 'back home' you lower it
to the safe height again.  Avalon's bed wasn't terribly cooperative.  I retrieved my friend from
across the hall, and the two of us tried everything we could think of.  We turned locks on and
off, plugged, unplugged...put brakes on and off...you name it we tried it, no luck.   Eventually
we called in the troops.  Once the nurse got here, we all repeated everything we'd already
done.  Sure enough, it sputtered and spit a time or two, but we eventually got it down.  Since
little miss is ordered flat, it's not like we really need the bed to function perfectly.  However, if
we go on to surgery w/o ever going home, I do believe we need to request a new bed!

As for the "Damn", yep, the headache is back.  RATS!  Avalon had begged for Cheetos, so I
went down to the cafeteria and got them and a Dorito chaser.  She ate the whole bag of
Cheetos, but only crunched through a few Doritos before she gave them up and started to lay
quietly.  Pretty soon, I saw her rotating on her side, and kind of hiding her face.  Joy-Anna was
in here chatting, and took one look at Avalon's face and said the same thing I did - she's in
trouble.  

I asked Avalon if she was in pain and she said, "No, I'm fine.  My head just hurts."  Yet another
example, she really doesn't feel pain like normal kids do.  I guess it might be more appropriate
to say she doesn't
report  it like others.  She feels it, she just thinks it's normal.  

Long story short, we've decided to go back on the morphine/Toridol rotation.  Unfortunately,
this means that stupid leak is likely still flowing.  Cripes I'm frustrated....

UPDATE:  Sure enough, 30 minutes after the morphine, Avalon rolled over onto her back from
her side and requested some food.  If the past few days ring true, she'll eat a few bites then be
full.  Soon after, she'll likely get a small headache (in spite of the drugs) and get really quiet for
a while.  I'm a tad bit tired of this.  She's bored to the point of being bonkers.  

Grammo is going to go ahead and come in so I can go home, get clean, pick up clothes and a
few other things.  Avalon's day nurse, Shannon, and I have come up with a survival plan for
the day.  Avalon will stay on a constant morphine/Toridol rotation until tonight, and we'll try
again.  This way, Grammo won't have to worry about assessing pain, she can just sit and keep
Avalon company.  Hopefully, she can also badger Avalon into drinking more.  We'll see.

As for surgery plans, the residents did as predicted this morning.  Avalon will be NPO (no food)
after midnight.  They think surgery might be a possibility tomorrow.  We all think they're nuts.  
Who in the Hades does surgery to reduce pressure on a kid who currently has none?  Much
more likely they'll do a blood patch tomorrow to finally close the stupid leak.  Avalon would
need to be NPO for that sedation anyway, so we're rolling with it.  Truth be told, Avalon won't
really care that much.  Food is not high on her list at the moment.  

Now that I have the website up and running on this little laptop, I'll try to go back and fill in what
the past few days have really been like.  In a word, they've been suckish.  For now, I hope
some of you find the new blog system to be acceptable.  If not, you can always just check the
home page like you used to.



I'm coming back later to fill in the rest of Sunday's events.  It was one of the hardest evenings
I've had.  It's taken me a while to process it all to be able to share.  The quick version of events
is this.  Grammo and Pappo came to the hospital to stay with Princess Avalon while I left to run
errands, get clean, and pick up more clothes.  While I was gone, the mineral oil took effect and
by all accounts, Avalon had the poo of the century.  Poor Cecil was stuck dealing with it,
because G and P don't handle lines well.  In addition, while I was gone, Avalon's foot IV started
to show signs of infiltration, so I had lots of info to return to after my 5 hour break.  

After G & P left, I spent the night arguing with know-it-nothing residents and a covering
neuro-surgeon that there was NO WAY Dr. Kosnik was taking Avalon into surgery in the
morning.  Carrie had warned me this might happen, and that they might make Avalon NPO
(nothing by mouth) after midnight.  I wish that was all they ordered.  Sure enough, the foot IV
blew, so we had to remove it.  Thoughtless mcResident was absolutely certain Avalon was
going to surgery, so she ordered up the IV team to start a new line.  I went over Avalon's
history from the past few days, and who had been keeper of the needles, and Alicia from the IV
team and I decided there was no way we were going to stick her.  Alicia (because she ISN'T a
resident ) agreed whole-heartedly that Dr. K wouldn't be touching Avalon on Monday.  
Therefore, I deemed that an angry mom and an IV team dracula trumped a brainless resident,
and we refused to touch our last remaining vein.  I told the nurse she was welcome to play the
'bitchy mom' card if she needed to, but she weaseled out of if without it.  

Then again, don't be too impressed with this nurse.  Dear nurse "A"" puts on a good show,
darn shame it's only a show.  When push came to shove, "A" was more than willing to roll on
me and agreed that Avalon needed her first "pre-surgery" hair wash.  Excuse me?  Just how
did she propose to do that?  Why
walk Avalon down to the shower on the other side of the unit!
 
  That's how.  Can you say...NO?!

This is where Joy came in incredibly handy.  There was point earlier in the year that Anna's
shunt had broken, and she had to live for a few days with an externalized shunt.  Anna had
been like Avalon, required to be 100% flat.  To wash her, the nurses and PCA's had an
amazing system with a special basin they used in the bed, that they emptied into the trashcan.  
I asked Avalon's PCA about it, but she said she didn't know how, and she would just do a
sponge bath for her head.  Ummm....I don't think so.  No one's head has ever gotten surgically
clean by
wiping it off you lazy git.  Try again.  

Joy explained to the PCA where the equipment was and how to do it.  She also told her we'd
need another set of hands, it takes two.  This is where I lost any and all like/trust/tolerance of
nurse "A".  She was down at the nurses' station LOUDLY complaining about being asked to
help. She griped enough other parents were quick to report back that she had no intention of
helping.  Basically, "A"  wanted a child on 100% FLAT bedrest to walk down the hallway, stand
in a bathtub and get her hair washed, just so she didn't have to actually work.  After "A"
publicly griped for a while, the CHARGE nurse, Barb, was fed up, and said she'd come help.  It
was the best thing that could have possibly happened.  

First of all, Barb is as sweet as they come.  She is very professional, possibly less willing to
jump the personal barrier than some of the other nurses, but periodically breaks her own rules.
 She honored me greatly this visit by giving me a warm, loving hug and sharing a personal
thought with me.  I think she's marvelous, and she certainly proved herself to be a nurse of
outstanding character tonight.  Far different from Fake "A", who had better hope she doesn't
cross my path any time soon.  

As for the bed bath, it was actually quite ingenious.  The PCA  was cross and unfriendly the
entire time.  She was in the same camp as "A", perfectly peeved she was actually being asked
to
work.  No matter though, Barb and I had a wonderful time.  We laughed and thoroughly
enjoyed the charming little girl I adore.  

To do the bed-bath, we first covered the bed with "chucks", plastic-backed absorbent cotton
pads.  After we placed the chucks, we covered them with a towel, so they were comfy to lay on.
 We rolled up two towels to place under Avalon's shoulders, to raise her to a comfortable
height to meet up with the hair basin.  Avalon rested her neck on the basin as if she was in a
salon.  The PCA filled up two regular basins with warm water, and used a plastic cup to pour
the water on Avalon's hair.  We took off Avalon's pajama top, and covered her with towels to
keep her warm.  Barb stood on one side of the bed, kind of cradling Avalon in her arms, and
the PCA stood at the head of the bed, pouring water over Avalon's hair, and then scrubbing
her scalp/hair with baby shampoo.  When the hair basin would get too full, we would lift Avalon
slightly, and tip the basin toward the trash can.  The hair basin kind of resembled a pond.  It
had an elongated side that funneled water off to the trashcan when we tipped it.  

Several rounds of pour, shampoo, pour, rinse, repeat and Avalon was finally done.  That's
about it for the actual business of the event.  But, trust me, the business was
nothing
compared to the
fun of it.  :-)

After we got Avalon stripped, wrapped in towels, and began the pouring...she announced to us
that she was having a "SPA treatment."  She said she was enjoying her spa experience, and
we could feel free to keep it up.  She requested her nails done and a massage if we felt so
inclined.  Barb and I were in hysterics, nasty PCA scowled.  Foo on her.  

Like I said before, Barb was in a very close, loving position with Avalon.  She was wrapping her
arms around her, keeping Avalon safe since the bed was up to the maximum height.  Having a
very small personal bubble anyway, Avalon was enjoying the attention immensely.  Before I
knew what she was doing, she reached up and felt Barb's hair!  Next thing you know, she tells
Barb, "Your hair is fuzzy.  I like it."  As Barb and I were giggling, Avalon continued.  "Your hair is
fuzzy.  My Grammo's is
crunchy."  Baa haa haa haa!!!!  That one nearly killed us!  
Avalon's best 'spa look'.  She was trying to look like a prissy lady.  :-)
Anna Marie and Avalon posing for a 'pre-surgery' picture.  Both of them are having decompressions
so neither of them will have this much hair for long!
The heartbreak of a hospital stay with no sibling visits allowed.  This is Avalon talking on my cell
phone to Ambrosia.  She did this every conversation.  This is the heartbreak of being separated from
your other half...the one person in the world that means EVERYTHING to you...
Nurse Barb...being wonderful, friendly, warm, and nurturing.  Thank you, Barb!
test run