Saturday Sept 10, 2005
Chemo side effects and the OR
Haaaloooo!  (think Tigger....)

I hope this email finds all of you happy, healthy, and full of the dickens.  

I wanted to update all of you as to how Avalon's Friday, Sept 9th date in the OR
went.  As I wrote you last week, this month's chemo was divided into two phases.  
Phase 1 was Thursday, in clinic.  Avalon had her monthly physical that day and
received her Vincristine infusion (chemo that she receives by IV, through her port).  
Phase 2 was Friday, when she received her interthecal chemo (in her spinal column)
in the Operating Room (OR).  

Avalon now has to undergo any procedures (bone marrow aspirations, lumbar
punctures) under general anesthesia.  She has the relatively rare reaction of
becoming hyper, rather than sedated, from the drugs they give the children for these
procedures.  Thankfully, its not a life-threatening reaction, but it certainly isn't a safe
one either.  Doctors and nurses prefer that you hold still when they're placing
needles in your spine and draining fluid...  Hmmm...seems reasonable to me...  A 23
pound child that 3 adults can't hold a bit counter productive to those

The good thing about OR, is that Avalon doesn't remember the procedures.  The
bad thing is, she has to starve longer - and general anesthesia carries its own
inherent risks.  We now know, there is an "interesting thing", as well.

Avalon has had general anesthesia for her three port operations - with no perceived
ill effects.  This time went flawlessly also.  Her blood pressure, temperature, heart
rate - all were clinically perfect.  The "interesting" reared its ugly head Friday evening
- and came to full, hurricane-force fruition on Saturday.  Apparently, the anesthesia
interacted with the steroids and chemo she received - and together they decided to
make her into a reasonable facsimile of Satan's Child.  

That Saturday turned out to be one of our more interesting cancer-family days.  First
though, let me explain what her monthly chemo normally does to her.  I've actually
shied away from this for most of my letters.  The fact is, the side effects are just part
of our lives.  We understand them, and deal with them - and I guess I've felt that the
rest of life is more interesting than bogging you down with the details of drug-world.  
However, after reading a fellow patient's diary entries about her side effects and how
they dealt with them - I thought you might all wonder about Avalon's challenges.

Avalon's monthly infusion is a drug called Vincristine.  As with any chemo drug, the
list of potential side effects is rather long - and is individualized to the patient.  I can
report some of Avalon's side effects from direct behaviors, others are deductions
we've made from things she does - paired with effects older children describe to the

First of all, the Vincristine puts Avalon off balance.  For the 10 days to 2 weeks after
an infusion, she falls frequently.  The lengthy version of why she falls has its own
medical term, and is likened to behaviors seen in the elderly.  All that you need to
understand, is that she acts as if she's tipsy.  She will list to one side, trip over her
own toes, and generally speaking - fall down easily and often.  The other half of this
effect is that she also often drops things.  The "dropsies" do very little to improve her
moods...(see the paragraphs about steroids)

Second, the Vincristine causes her jaw pain and aching joints.  Older patients
describe the jaw pain.  In Avalon, we see biting.  She bites everything - and tugs and
chews on it like a puppy would.  When I say everything - I mean it.  She will walk up
and just latch onto the arm of the couch, or the blanket on a bed.  Its a bit like
dealing with a two-legged puppy for a week or so.  She's also very prone to biting her
sister during this stage, so we have to be vigilant in Ambrosia's defense.  As for the
joint pain, she exhibits that by wringing her hands often.  She'll rub her hands
together or pull at her fingers.  Sometimes, she chews on her fingers, like she's
trying to make them stop.  Now that she's getting more verbal, she will show me her
hands and say "Finger!  Finger!"  She also often complains about her elbows, wrists,
knees, and ankles during this time - basically her joints ache.  Older kids say its like
having an awful case of the flu.  In Avalon, we see that she often stops and sits
during this time - presumably because things ache...

Thankfully, Avalon has never seemed to have developed the aversion to scents that
most children do.  She has, however, become what we lovingly call a "bat child".  
Chemo can make one or more of the senses heightened.  In most children, its the
sense of smell.  In several of them, its sensitivity to light.  For Avalon, its light and
sound.  She hears sounds that only dogs and bats can - and absolutely despises
loud sounds of any kind.  Again, now that she's more verbal - she's often able to tell
us to stop a noise, or "cover ears!" when something bothers her.  That's not to say
she doesn't do her own fair share of noise making...but on the whole, loud bothers
her terribly.  She's also utterly adverse to bright light.  She and Dracula could be
bosom buddies.

Another Vincristine side effect has to do with Avalon's tastes.  For some people,
Vincristine can cause a very heavy metallic taste in their mouths.  It appears that
Avalon suffers from this.  For about two weeks after a dose, she gravitates heavily
toward spicy, salty, high fat foods - things that will mask the metallic taste.  She is
very anti-sweet during these weeks, apparently sweet doesn't "cut the mustard" so to
speak.  The combination of the feeding frenzy caused by the steroids, and the
bizarre tastes caused by the Vincristine...have led to us nearly owning stock in Bar B
Que potato chip companies...  Oh well, the days of pristine eating habits will have to
wait until after the days of Vincristine.  I happily surrender my parenting merit badge...

The real "joy" of Vincristine, is the 5 days of steroids that she takes with each
monthly infusion.  The effects of the steroids normally last about 10 days.  They
make her cranky, hungry, cranky, hyper, cranky, and did I say...cranky?  Yeah,
steroids are really a barrel of laughs...  

Although the entire chemo regimen leaves Avalon almost permanently tired, the
steroid week keeps her from sleeping.  Steroids kind of rev her up - and no matter
how tired she is, there are always two or three days that she can't nap - and sleeps
very fitfully through the night.  

Don't get me wrong, my tiny little tired person does her fair share of running willy nilly
through the square.  Its just that it comes in far shorter bursts than other two year
olds...and with a greater price.  A day of running and playing with Grammo and
Pappo will usually lead to two or three naps the next day or two - and a large amount
of couch potato time.  Most days, I forget about how quiet she often is.  Then I'll be
somewhere, and see normal two year olds tearing around in circles, bouncing in, out,
around, over, and under.  And there Avalon will be, sitting in her stroller - taking it all
in.  She's quite the observer - people and places seem to fascinate her.  I'm
constantly wondering whether she was always going to be the omnipotent watchful
eye...or rather she's adopted that job as her way of dealing with life now.  I suppose
only time will tell...

Now, you're up to speed on life after infusion.  Shockingly, its not quite as bad as you
may be thinking.  We've learned to tread softly for that first steroid week, keep tons
of chips on hand, and surrender normal parenting standards for the worst few days
of it.  Even sissies know that the rules don't always apply if mommy says its Avalon's
"mean week".  But overall, life just goes on.  Avalon does her fair share of wreaking
havoc around the house, chasing kitties, and most recently....flushing unknown
objects down the toilet.  Despite the chemical warfare in her bones...she's a normal,
ornery two year old.  That is, except for the Saturday after the OR...

As I mentioned earlier, the theory is that the anesthesia interacted with the steroids
and chemo...causing some god-awful cumulative effect.  All I know, is that Aurora,
Ambrosia, and I adopted the phrase "duck and cover" as our motto of the day.  We
spent Saturday in permanent self-defense never knew just what she was
going to chuck at your noggin next!  She winged pretend food at Ambrosia, toys at
me,  real food at Aurora.  Let's just say, it was quite the adventure.  Then there was
the screaming...  Oh my any time, for absolutely no reason, Avalon would
just stop and scream.  I'm talking blood-curdling, someone-is-pulling-my-toenails-off,
people-in-Zimbabwe-heard-her screaming.  She'd sit on the couch and scream.  
She'd stand in the middle of the floor and scream.  She would walk up to you, look
you in the eye...and scream.  It was a fun day...

By late afternoon, the girls and I had given up being frustrated...we were just outright
amused.  Poor Avalon, the more she flipped out, the funnier it got to be.  I'd go to the
bathroom, hear an avalanche-worthy scream...and come running, only to find the
other two plastered against the furniture saying, "Its not us!"  We'd look at each other
and crack up.  (Which, by the way, seriously didn't help Avalon's mood any.)  
Eventually, we adopted a "if you can't beat 'em, join 'em!" attitude, and we'd scream
in chorus with her.  I'm sure some shrink out there would be convinced we were
tormenting her, and permanently damaging her psyche.  Truth is, we were battling
the beast as best as we could...laughing ourselves senseless instead of crying.  I'm
pretty sure her psyche survived the day...our eardrums are another story entirely...

The best news is, the day did come to an end...and Sunday did dawn a little bit
brighter.  Actually, Sunday was greatly improved - and we went on to have a
wonderful day.  In fact...that's your next email.  Hope you'll "stay tuned"!

Hugs to ALL of you - and just because you missed

Alicia, Nick, Aurora, Ambrosia, and Avalon
Our Journey:
Avalon's Army of Angels