|March 16, 2005
Avalon back home...
Good morning my wonderful e-family! Twiddle dee, fiddle fi, home again are we! Yippee!
(OK, Elton John, I'm not)
First, let me again say thank you for all of your love and support in the past week. Stupid web
mail. Sure enough, when I logged on this morning, there were a few dozen messages that
webmail never picked up. So, when I asked all of you if I was conversing with myself...yep -
webmail was malfunctioning as normal. Ack! Its a bit frustrating. Hopefully, my lunatic
rantings were at least a tad amusing.
On to bigger and better things! Welcome, welcome to new e-family members!! My, we have
become a rather motley bunch. I'm ever so glad we don't have a web cam, I wouldn't want to
scare all of you lovely people away. Seriously though, I hope that someday we will get to hug
each and every one of you in person. We owe you our sanity.
I wanted to "fill in the cracks" about Avalon's hospital stay. I never had the chance to tell you
very much, because time was always a huge factor. During our diagnosis stay, Nick and I
were both always at the hospital. Unfortunately, I was the only one who stayed this time. Nick
has taken so much time off of work with Aurora's recent surgery, and Avalon's numerous
clinic visits, that we just couldn't spare him from the money train. That meant I could only
email for a few minutes, if we had a visitor. And again, I apologize to anyone who didn't get
our updates. A) I hate webmail, and B) my webmail address book is severely lacking.
Now on to Avalon. Its all pretty straight forward, but I'll recap a few things to remind you.
Avalon is in the worst phase of chemo, Delayed Intensification. This phase has two parts, a
three week course of drugs, followed by a resting period. Then a two week course of drugs,
followed by a resting period. During D.I. drug times, the chemo continues - no matter what.
Suffice it to say, D.I. is a rotten few months that we will gladly bid adeau, as soon as we can.
I'm also pretty sure we won't look back on it with fond memories.
Avalon's third week, of part 1, of D.I. was from Thursday Mar 3 - Thursday Mar 10. She
handled the first two weeks reasonably well. We did suspect a urinary tract infection the first
week, but it turned out to just be a side effect of one of the drugs. The only real problem is
that she became very difficult to "access". "Accessing" is when they plug a needle into her
port (that's in her chest wall). The needle is attached to a tube that they can use to
painlessly draw blood or give chemo. The problem is, she began complaining bitterly about
accesses. Complaining is, perhaps, a bit of an understatement. Screaming so loud that she
may have registered on orbiting satellites, is more accurate.
I voiced concerns about the port pain to her nurse practitioner. However, since she had no
other symptoms, there was really nothing to be done. Then on Monday, March 7th, Avalon
woke up with shivers, and we ended up going to the clinic to check her out. After zillions of
questions, we all decided she should be admitted for further testing. We suspected
everything from possible brain bleeds, to a port malfunction. We were in-house Mon, Tues
and most of Wed. We were safe and sound at home by 7:30 pm Wed, with no plausible
explanation for her port or arm pain. We just hoped that whatever it was, would resolve itself.
Oh, how wrong we were! 4:30 am Friday morning, Avalon woke up with a fever. A call to the
Heme-onc doctor on call, and we were off to the ER to be admitted. At least this time I had a
little warning...I actually got to pack clean skivies! That may sound small, but wow! clean
drawers are rather nice... I mean, its bad enough you sleep and drool with nurses watching
you, at least your britches can be clean!
Avalon started her weekend getaway with six hours in ER being poked, prodded, tested and
tweaked. She characteristically hated every single person in scrubs. They, also
characteristically, were loving, gentle and very kind-hearted. Our nurse was stupendous!
She blew bubbles, sang songs, and generally speaking, turned herself inside out to be nice
to Avalon. Our admissions clerk, Nanette, was a true angel in scrubs. She fell in love with
Avalon, and felt sorry for her having to come back so soon. She gave her a stuffed animal as
she checked us in. She brought her another one when she had to come back to formally
admit her. In fact, she went far beyond that.
If any of you don't know, Kohl's (a local department store) sells stuffed animals that benefit
Children's Hospital. This year at Christmas, they sold a book and several animals that were
characters in the book. The stuffies are very soft and well made, and a true bargain at a
mere $5 each. I highly recommend looking there if you have a need for an inexpensive
stuffie. The selection of animals changes with the season. To keep up their good work,
Kohl's donates any left over stuffies to the hospital when they change the ones they carry.
Avalon's beaver friend that she received for her CT fiasco, was a Kohl's animal. Likewise, the
badger that Nanette gave her, was also from the Christmas collection.
During our ER layover, my sister (who had come to provide some comic relief to the day) and
I were chatting with Nanette. We were all agreeing how much we appreciate Kohl's and how
wonderful the program is. Nanette went on to tell us how adorable the spring animals were,
and how much her 3 year old loved the duck she just bought her. Annette (my sister) said
she'd have to go check at Kohl's and see if she could track down a duck for Avalon. Nanette
said, "No, I'm going to Kohl's tonight. I'll get her one and bring it to her." Of course we
argued, but Nanette's determination is most definitely equal to her big smile, and her huge
heart. Sure enough, Saturday brought a beaming Nanette, and an overweight, overcute duck
to our door. Avalon loves him! She drags him by the neck and quacks like a champ. I've told
you before, angels don't necessarily wear wings. Sometimes, they wear sensible shoes and
Unfortunately, the Heme-Onc floor was full on Friday. Avalon was placed in a room in the
Infectious Disease ward on the sixth floor instead. Yes, you read that right. She has an ANC
of 20, has leukemia, and some nitwit decided Infectious Disease patients would make great
neighbors. Suffice it to say, I freaked out the entire time we were there. I didn't like our first
nurse's aide at all, and I despised the lapses in contamination control. By 8pm, I'd had it. I
marched down to the 5th floor and begged the charge nurse to be able to "come home".
Some real concerns, and a whole lot of sucking up, and we found our way "home". My blood
pressure immediately came down 100 points, and I renewed my efforts to tell each and every
caregiver in Heme-Onc how much we appreciate and love them. These people are second to
none, and I trust them implicitly. That's no small detail when you face the fight we do.
Friday's blood cultures finally grew something. The "English" version is that Avalon has a
staph bacterial infection in her port. We spent Sat, Sun, Mon, and Tues giving her IV fluids,
IV antibiotics, drawing constant blood levels and cultures and watching vital signs like
obsessed ninnies. Basically, after you finally grow something from a blood culture - your life
becomes a giant waiting game, essentially playing the numbers until you roll snake eyes.
Tuesday we hit the jackpot of three negative cultures in a row, and our payoff was a ticket
Here's the neat part, Avalon came home on IV antibiotics. I'm oh-so-thrilled to report that I'm
the schmuck who gets to give them to her. Every eight hours, I get to hook her up to an
infusion that takes an hour to go through. The antibiotic must be refrigerated, but also must
be administered at room temperature. That's a nifty little bump on the pickle. I have to
remember to get it out to "thaw", early enough that I can stay on an exact dosing schedule.
By the time you figure in the OCD handwashing and cloroxing that it takes to prepare my
"work surface" and all of the syringes, the entire dance takes easily 1 1/2 hours from
beginning to end. If my fingers don't crack and fall off from the bleach and sterilizer, then I
may off myself from cleaning product fumes. Either way, I'm pretty sure I've chemically
mangled a good portion of my system...
Funny thing is, Avalon, Aurora and Ambrosia find the whole process fascinating. Avalon
holds her little tubie up for me to clean, and we all count together while we wait for the alcohol
to do its thing. The girls each hold caps to syringes, and all know what the pump looks like
when its done. Aurora and Ambrosia know to check Avalon's clamp on her tubie, and Avalon
knows to tuck it back into her outfit when we're done. Go figure, mom's complete undoing has
become a bonding experience for the sissies. I officially cry "uncle" to the cosmos over this
Since this has once again become one of my novels, I will let you all go with one last family
funny. As Grammo gave Ambrosia (our three year old) a bath Monday morning, Grammo told
Ambrosia how pretty her hair was. Ambrosia answered with,
"I'm keeping Avalon's hair for her."
"Avalon's hair fell out. I'm keeping it for her. I'm going to take very good care of it for her."
How on earth she determined this, well that's yet another question for the cosmos. All I know
is that I'm pretty sure Grammo heard the definition of unconditional love.
To all of you, I again say "Thanks!" You've lifted us over another rough spot in the road. As
soon as I can get some computer nightmares sorted out, I'll send you hospital photos.
They're actually quite funny. Did you know that Spaghettios are a darn sight easier to wipe
off of a bald head than one with hair? Maple syrup is another story. The stuff is like rubber
cement no matter what it sticks to.
Thanks for "sticking" with us. You add feathers to your own wings every time you stop and
read one of these letters. But please, don't be sad - Avalon's doing great and we owe that to
all of you!!
Alicia, Nick, Aurora, Ambrosia, and Avalon
Avalon's Army of Angels