March 9, 2005
We're home!
Sent: Wednesday, March 09, 2005 11:58 PM
Subject: We're home!

We're home!  Let me see if I can explain all this craziness a bit better.  

Monday morning, Avalon woke up and had a case of the shakes, along with teeth chattering.  
(Think of being very cold)  Even though she was dressed warmly, and the house was warm,
she continued this for a few hours.  I called the Heme-Onc clinic, and explained my concerns
to the phone nurse.  She agreed with my feelings, that Avalon may just need some blood, so
she asked us to come in for labs.  

A quick visit to the clinic was a bit tricky, because Aurora's post op check-up from the
appendectomy was also on Monday.  So, a good friend of ours, Jeannie, agreed to meet me
at the clinic and help me be in two places at once.

I took all three girls to the clinic and we checked in like a normal day, doing weight and
height, and waiting to be accessed.  Because Avalon had also been expressing a lot of pain
in regard to her port, the nurse practitioner wanted to see the port before access.  She
decided that Avalon looked bad enough, she actually wanted to do a real exam, so we went
back and got her temp and blood pressure also.  That was strike one.  Avalon normally runs
97.4-97.6 for her average temperature.  At home, her temp had been 96 when she was
shivering (another indicator she may need blood).  However, just a few hours later, the clinic
got her at 98.8 - a rapid rise in a short time...not good.  '

From there, I took Avalon back and got her accessed.  However, I couldn't go on to an exam
room, because at this point, Aurora was late for her appointment.  So...I left Avalon and
Ambrosia in the Heme-Onc waiting room with Jeannie, and headed up to Aurora's appt.  An
hour later, Aurora was finally cleared to go back to a normal life, and we were headed back
downstairs to the clinic.  OK, score one positive for the day...

Back at clinic, we began a 3 hour long wait while we decided what to do with Avalon.  While I
was going through a million questions with the nurse and eventually, the doctor, Aurora and
Ambrosia were stuck waiting.  Thankfully, Jeannie was joined by her mom, Marnita.  Believe
me, it took both of them to keep a way-too-bored 3 year old from bouncing off the walls.  

What came out during the questions, was that Avalon has been completely favoring her left
side.  All pain complaints have been about her left side.  Of course, she can't verbalize
terribly well, but we have observed her rubbing her left shoulder and elbow, even when she
doesn't know we're watching.  Yes, this period of chemo makes them miserable.  But the
misery should be bi-lateral - not one sided.  Consider this little fact, strike two.  Why?  
Because unfortunately, the drug she was injected with a few weeks ago can affect blood
clotting proteins, which can lead to brain bleeding (and potentially, the one-side issues).  So,
it was decided that she would be admitted, and we would test for infection in her port and
clotting problems.

Sure enough, her clotting proteins were (and as of today, still are) too low.  Yep, strike three
for the day.  As the intern put it, "Her values bought her a ticket to a CT scan.".  Oh
whoopee...another medical test to put on her list of "accomplishments".   The order for the
CT was "stat" so we were taken down pretty quickly.  The nurse that took us down, has
known Avalon since the beginning - so we were joking with her about what decibel level
Avalon's screams would reach.  (She was known as "the screamer" for quite a while)  You
see, they don't sedate kids for CT scans...they strap them down.  What fun!  NOT  

Once we got there, the tech strapped her in so fast, Avalon never knew what hit her.  She
was so scared, she never made a peep.  You could have knocked us over with a feather!  So
here Nick and I were, telling her how  proud we were, how great she was doing...how it was
almost over...  When out comes the tech...the CT machine croaked!  Yep, my kid's head is so
thick that she offed a million dollar scanning machine.  Now that's something to brag about!  
Rotten thing is, that meant we had to unstrap her, pick her up, move her to another
room...and start the whole awful thing all over again.  This led to Mommy and Daddy
promising her a great new Build An Elmo (see above letter) and a zillion apologies from the
nurse and technician.  Not to mention a stuffed animal from the tech.  She did her best to
suck up...

The GREAT news is that the CT was negative.  Wahooooo!!  (alright, I suppose Monday did
have two huge positives two offset the three strikes...)  Now we had to try to figure out why
her port was causing her so much pain.  Frankly, the next two days can be summed up fairly
easily.  We chatted endlessly with 5 different doctors, and according to them...they chatted
with several more.  We ran a dye test through the port, and ran blood cultures on it.  We
gave her IV antibiotics in case of infection, and watched her every move.  Long story short,
we know no more now than we did at the beginning.   It appears that some of the pain may be
resolving itself, and we're hoping to see more progress over the weekend.

We basically ruled out all very serious issues, and we're just going to give the problem some
time to hopefully work itself out.  It could be that she fell on the port and caused a deep
muscle bruise.  It could be that a recent growth spurt displaced it a bit.  It could be a
combination of that or something we haven't thought of.  Who knows?  The port is working
perfectly, and her brain and blood cultures were A-OK, so we're in a holding pattern hoping
for the best.  I hate the fact that she's obviously in pain, but there is absolutely no way to test
for a muscle bruise or pinched nerve.  We just have to hope for the best.

All I can say for sure is that we're home and we're thrilled.  She and I will actually get to sleep
tonight - no one will be waking us up to poke, prod, assess, evaluate, or test her.  Best of all,
we get to hug and smooch the socks off of sissies tomorrow and play like monkeys.  Man...its
good to be home!!

To those of you that sent lovely notes in response to our call for "positive thoughts" - Thank
You!  Everyone's positive wishes worked wonders...that CT scan was negative.  I couldn't ask
for more than that.  To those of you I couldn't email from the hospital...Sorry!  I'll try to get
that address book updated.  And to those of you that called and went out of your way to be
supportive (again), I'll never be able to say Thank You enough!!!  

You are all incredible people for caring enough to give two whits about our little girl.  We
appreciate each of you!!!

Love,
Alicia, Nick, Aurora, Ambrosia, and Avalon
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