May 18, 2005
Avalon Updates...Part 2
Alright...we're moving forward in our timeline..

When we last were together...(am I sounding Allistar, yet?)

OK, I'll stop goofing and get back to business.  The last email was about April 28th, our last
day in the hospital and Avalon's big meeting with the Blue Jackets.

Although Avalon was released from the hospital on the 28th, she had oodles more medical
procedures to endure.  She came home on IV Vancomycin for her port infection, oral Flagel for
her C-diff, daily wound packing for the hole from surgery, and weekly PICC dressing
changes...all in addition to our normal oral chemo regimen.  I keep telling our doctors that I
didn't go to med school for a reason...and I'm more than a bit miffed that the universe has seen
fit to drag me there kicking and screaming...

The IV Vanc and oral flagel we're old hats at, no big wrinkle.  The daily packing....big, BIG
wrinkle.  Nick decided in the hospital that we weren't cut out for that.  Oh, he was sooooo right.  
So, Friday the 29th brought our first visit from our new home health care nurse, Stephanie.  
Stephanie came Fri, Saturday, and Sunday - to repack Avalon's chest and to change her PICC
dressing.  Starting Monday, we got our new home care nurse, Rebecca.  

Rebecca came Mon, Tues, Wed, and Friday  to change the packing and had the added bonus
of a finger stick for bloodwork on Tuesday.  Rebecca was free from us on Thursday, because
Avalon had a clinic day and those nurses were "stuck" being mean to her.

Packing wasn't pleasant for anyone involved.  We would lay Avalon on the couch, and I would
hold her arms at her side, while laying my cheek against hers to pin her head down - with our
faces pointing away from her chest (so we didn't breathe into her hole).  She screamed the
entire time - and writhed in agony during the actual packing.  All told...this ranks as one of the
worst things we've had to do to her.  We tried days with the Tylenol with Codeine and without -
it didn't seem to help at all, so we chose not to medicate her most of the time.  There are so
many horrid chemicals coursing through her veins...it seemed awful to add one more if it wasn't
helping.

The odd thing is...as much as Avalon cried whenever the nurses came...she always forgave
them immediately after the procedures.  Our nurses would get hugs and smooches before they
left each day...even though they'd be greeted with sobs the next day.  The whole situation was
a good analogy for these children's lives.  They suffer through the moments...but appreciate
the minutes.  There is a lesson in that for all of us. Someday I hope to be as mature and
evolved as my two year old baby is now...

Thursday, May 5th, was a clinic day.  Until we got there, the clinic nurses didn't know Avalon
had lost her port.  The nurse who regularly accesses her, was horrified at having to change
her PICC dressing.  Basically, PICC's are often very painful for these tiny guys.  Avalon seems
to fall into the that category.  She complains if she bumps her arm, or heaven forbid...if one of
us bumps or touches it.  With that in mind, you can imagine how miserable it is to have its
entire dressing and tubies changed once a week.  It entails several adults holding her down,
and holding her arm perfectly still - all while she screams and sobs.  There is a point in the
dressing change, that if she's not held still enough...the PICC can slip...requiring it to be
removed and her to have to go under again for a new PICC to be inserted.  Since we'd all like
to avoid that...it means we have a death grip on her while everything is being changed.

To add insult to injury, her PICC line has proven to be a bit cranky...and won't allow us to draw
blood from it.  So even though she technically still has a central line...she is having to undergo
finger pricks for blood work.  I think the little razor-blade finger-slicer is Machiavelian and
should be outlawed!  Its bad enough they slice and dice her...but then they have to
S-Q-U-E-E-Z-E the dickens out of her tiny little finger to make it continuously drip blood into
however many vials they need at that time.  Its perfectly rotten, to say the least...

The poor nurse, Jackie, who had to do the PICC change, also got "stuck" doing the finger stick.
 She must have apologized 101 times to Avalon.  When she found out Avalon needed her
chest re-packed, she began canvassing the other nurses offering everything but her first born
for one of them to be mean to Avalon, instead of her.  You should have seen these women
heading for the hills!  They "ewww"ed and "no-way"ed....and all fought over who was going to
have to do it.  They couldn't imagine being that "mean" to a little kid.  Little irony here...our
home health care nurse said often how she couldn't imagine being a Heme-onc nurse...  
Apparantly, everyone finds their niche in this world...

In the end, the entire Heme-Onc clinic lucked out.  Avalon's surgeon is in the office on
Thursdays, and wanted to see how she was progressing.  Translation, the surgery nurse got to
be "mean" and our nurses were spared the screamfest.  They high-fived and cheered when
they got the good news.  You gotta love these women!

The surgeon's good news was that Avalon's wound was healing beautifully.  The bad news was
that she has concerns about Avalon's ability to withstand another port.  Dr. Caliano requested
an MRV before she will entertain talk of re-implantation.  An MRV is an MRI of the veins,
particularly those in Avalons neck and chest.  Cross everything you own that it turns out well,
living with this PICC for another 19 months would be
awful.

In all, Thursday was a less than stellar day.  Our one shining virtue of the day was that Avalon
finally broke 10 kilograms!  She weighed in at a whopping 10.18 kg, her highest weight since
diagnosis.  If you figure in her PICC change, finger stick, dressing change and wound exam,
with potential questions about getting a new SIP, I'd vote that weight or no weight..this was a
clinic day we'd like to forget.  

Speaking of forgetting, I didn't mention her hearing.  There is a possibility that she may have
hearing damage from being on such high doses of Vancomycin for so long.  We're riding it out
currently, hoping that OTC medicine to reduce her ear wax may help with hearing. Cross your
fingers that the simplest solution works, for once.  Wouldn't it be lovely if she had a "normal"
problem for a change?

Friday, Saturday and Sunday, our home health visits continued as normal.  Over the weekend,
we had a different nurse - but the wound packing continued as before.  Avalon would cry as
soon as the nurse came to our door, but then hug them when it was all over.  An employee of
Aurora's school had to come to set up a new computer for her - and Avalon wailed until we
showed her he had no badge or stethoscope.  As soon as she recognized that...she was
friendly as ever to him.  I'm not sure if he was amused or horrified...  I'm just proud she's so
smart and so forgiving.

Oh, and one more tidbit from that Thursday.  Before we left the hospital, we stopped by to see
a friend who works for Circle of Friends.  Circle of Friends is part of the Columbus Children's
Hospital Foundation.  Cof F raises money solely for pediatric cancer reasearch.  In fact, 100%
of the money they raise goes to research - their overhead is absorbed by the main foundation.
 (I have a link to them on the website.)  The "tidbit" is that they want to use Avalon as their
"poster child" for a large fundraising event in June!  They will have huge posters of her and her
story...and we'll get to go to the event, so she can smile and make people write monstrous
checks.  We've already bought her a pink frilly dress and fancy hat for the shindig.  The best
part is that we're finally going to be able to "give back" to the place that's meant the world to
us.  We can't wait!  I'll post details about all of it soon.

Now that I've made your eyes fall out and roll across the floor...I'll end this email here...and
promise that we're almost caught back up.  Good grief, it would be a whopping boatload easier
to just stay caught up in the first place!  Yeah, well....the best laid plans of mice and women...

Love to ALL of you!!!

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