Avalon Updates...Part 1
you.
Yes, I sent out my soapbox emails last week...but I know I haven't updated anyone in weeks
about how Avalon is actually doing. I've even let the website slide this past week. Bad, bad
mommy...
As you all know, Avalon was hospitalized April 21st through April 28. The infection in her SIP
(subcutaneous infusion port) had reared its ugly head again, and the doctors had no choice
but to remove the port. The original plan was to remove the port...keep Avalon in the hospital
for a few days on IV antibiotics to make sure her blood infection was gone... and then
re-implant another port.
The reality was that the surgeon was concerned about the tissue surrounding the port, so she
chose to not "close" the wound from the port removal. They then placed a PICC line
(Percutaneous Intravenous Central Catheter) in Avalon's right arm, and sent us home with IV
antibiotics and an open hole in her chest requiring daily "packing". I believe that's where I left
off for all of you. Good grief...that was quite some time ago... OK, that leaves me with an
absolutely enormous amount of information to share...so I'll split this into several emails to save
your sanity.
April 28th
This was our last day in the hospital. It was rather eventful. I had not been able to spend the
night with Avalon on the 27th, because she was scheduled to receive her PICC line the
morning of the 28th - which requires sedation. Why couldn't I stay? Because, shock of the
ages...I'm still nursing her, and of course, with pending sedation she couldn't eat. (I'll cover the
whole nursing thing at some future date...)
As scheduled, Avalon got her PICC line the morning of the 28th. No excitement, no drama, it
went smooth as silk (finally!). Back at the room, Avalon was snoozing comfortably, thank you
narcotics. After a few hours of blissful sleep, people began poking their heads in pestering
Avalon to take part in a "fun" visit by the local professional hockey team, the Blue Jackets.
Each of the four groups of people who came to "invite" Avalon made a big fuss that the team
and their mascot, "Stinger" - would be out in the Heme-Onc lobby, and that there would be
crafts, and lots of fun...blah blah blah. Meanwhile, Avalon is still in a drug-induced snore-fest,
but that didn't daunt any of them. They'd come in to ask her to go...we'd point at the lump of
slumber and say "Are you kidding?"
Finally, group number four crossed the pester-prod-poke threshold...and Avalon woke up.
Normally, we would have still refused to go, but Avalon has a special "thing" for giant walking
stuffies. She's not only not afraid of them...she's ardently interested in touching them. We
decided to try to convice her to go extract "pester revenge" on Stinger. She, however, had a
different agenda. She hadn't eaten since the night before...so all she had on her mind was
FOOD. She refused to even consider leaving the room without her potato chips. OK,
fine...we could accomodate that. Especially since she also flat out refused to even consider
walking. Avalon had hornswaggled daddy into pushing her around the unit 10,000 times in this
little green car, and had laid claim to it. Basically she made it clear that if we wanted her to
leave...she would be riding and eating chips. OK, OK, easy enough.
To complete the picture, I have to give you some background information. Our house rule is
that you never leave the house without a hat. (you also never go into a strange building
without a mask...but that doesn't apply here...) Avalon has translated this to the Heme-Onc
unit. She sees her room as her "house" and the hallways as "leaving her house". Whenever
she leaves the room, she always wears a hat of some kind, and usually a boa, scarf, purse or
some other accoutrement as an added bonus. I've learned to take several different ones for
her to choose from. The pictures on the website show you what I mean.
So here she was, aiming to leave the room to meet the Blue Jackets. First of all, she was being
chauffered in her little green car, IV pole in tow. Second, she's smeared with Bar B Que potato
chip dust, because she has a bag of them cemented in her fist, that God himself couldn't pry
out. Third, she chose to wear her favorite hot pink boa and matching silver crown with pink
jewels. I can safely say...Diva doesn't begin to touch it. With all of this going on...we finally
headed out to meet the Bluejackets...or more to the point, Stinger.
What no one had told us...was that this entire thing was a PR initiative by the NHL. The NHL
supports cancer research, and the Blue Jackets, in particular, have a soft spot for pediatric
cancer. We walked into the lobby to cameras and reporters from 3 stations. Avalon looked like
we'd dolled her up for the tube...and she could have cared less for any of them! Too funny.
We ended up meeting a few former players that are now front office people and coaches, and
Nick got to introduce someone he knew to Avalon. He has worked on the house of the "voice
of the Blue Jackets" game announcer...so they were glad to see each other.
While the gentlemen were very kind in person...I'm not really sure how I feel about the
organization at the moment. I spent the next week trying to contact someone to offer to
volunteer with their pediatric cancer foundation. I offered to be a speaker, lick envelopes,
educate people...whatever I could do. Since they haven't bothered to ever return my
messages...I'm not all that convinced they really give a fig. Unfortunately, I think its another
case of "hey...this looks good on camera...but fooey on the kids in reality." I hope I'm wrong.
As for the news stations...absolute 100% cheers to our local ABC affliate, channel 6. Clay Hall
did a wonderful job of talking about pediatric cancer and the NHL initiative. He interviewed a
young patient, and had footage of coaches talking about how fearless these kids are in
comparison to any adults they knew. (by the way...that's one of the best summations of these
children I've ever heard...) The local CBS affiliate, Channel 10...well, they stunk. In fact, they
stunk worse than 20 year old piles of rhino dung. For a channel that normally does good
things...they should hang their collective heads in shame.
Because Avalon was firmly planted in her little car, we never left the walkway that leads to the
Heme-Onc unit. (Our unit was an add-on to an existing building. When you leave the elevator
lobby to enter Heme-onc, you go up a long ramp that winds around a multi-level, lobby seating
area. This lobby is considered "safe" for our kids - that's why they held the event there.)
Channel 10's camera and reporter were standing next to us on the ramp. In fact, the three
men they interviewed, were the three gentlemen who spent long periods of time with Avalon.
I have three complaints with Channel 10. One, I never saw them aim the camera at Stinger, the
craft table, or any of the children. Two, as two patients were trying to leave the unit to go
home, the cameraman couldn't be bothered to move out of their way. Nick and I eventually had
to get rather nasty with him so that he would let the kids and their parents exit. He was
completely indifferent to the children. Finally, and most importantly, the reporter used the
event as an excuse to get to interview these men about the hockey strike and upcoming
season, etc. Not one word was mentioned about the children. The only reason you knew they
were at Children's at all, is that in the opening to the story, they mentioned the Blue Jackets
went to the hospital as part of the NHL program. After that, the interviews were all about the
strike.
I know you may be thinking that was an editor's mistake. Nope! The reporter and cameraman
were callous and indifferent to the children...and should be ashamed of themselves. I could
have reached out and bitten the ankle of the camera man (I was sitting on the floor next to
Avalon) - and the man never even bothered to acknowledge my existence. May they never
know the heartache of the families they completely ignored. If I thought they'd care, which I
don't, I would want to point out to them that one of the children they ignored that day most likely
won't see Christmas this year...tell her father that hockey strikes are more important. In all,
Channel 10 moved 400 rungs down the ladder in my opinion that day. They should be
ashamed.
I'm going to purchase a copy of the story from Channel Six so that I can try to put it on the web
site. I'll let you know if I'm ever successful.
After the hockey thing, we returned to our room, and awaited final instructions and medical
procedures so that we could go home. Before we could go, Avalon had to have her peripheral
IV removed, and her wound re-packed. Wow, was that interesting..
The "packing" for Avalon's wound looked a bit like a wick for a kerosene lamp. It was tightly
woven, thin, fabric-like in texture, and only an inch or so wide. (I'm sure this all varies by size of
wound...this is what ours was like) The packing was stuffed down in the wound with an end of it
sticking out - to "wick" moisture out of the wound to the gauze on top. It draws moisture out to
allow for healing. The awful thing is that the nurses actually "pack" the wound...they used the
end of sterile q-tips to stuff the material into her chest like gunpowder in a muzzle. Bleck! And
by the way...this was ridiculously painful for her.
Our last day in the hospital was my first experience with packing. Our nurse, Bob, came in to
do it, and Nick volunteered to hold Avalon, so I could warm up to the situation. I was at the foot
of the bed, looking up from Avalon's feet. The only funny thing I can say about all of this, is
what I thought when Bob removed Avalon's outer dressing. Here was my beautiful daughter,
shrieking like a monkey...looking for all the world like a wipie dispenser! Seriously! She had
this hole in her chest with stuff sticking straight up out of it...like any wipie dispenser you've
ever seen... Had she not been so miserable, I might have even had to giggle as Bob pulled out
the packing and it seriously completed my wipie analogy. Chalk this up as another weird
chapter to this saga. Just when I think things can't get any stranger...they always manage to
find a way...
After being packed, and getting her IV out...we were finally sprung. We made it home in time to
watch Avalon on the 6 o'clock evening news. A rather fitting ending to our week from Hades.
This seems to be a natural place to pause in my tales of torture...so I'll end this email
here...and pick up with the next round.
As always...we love ALL of you for caring enough to read my little stories. Hugs to one and all!
Alicia, Nick, Aurora, Ambrosia, and Avalon
