Avalon at home, hospital pictures
it, until I had the pictures posted on the website. However, Avalon
became very sick Monday night - and all day Tuesday, leaving me
no time to work on emails or the website. We re-entered the
hospital Tuesday night, April 12th -and just came home last night -
Monday April 18th. I have now put the photos on the website, and
thought I'd better send this email, before I write the current update.
Sorry if this is confusing.
Hello one and all!
OK, time to take me out to the woodshed and whip me with a moist pasta
product... I'm terribly late with this update!
Avalon actually came home from the hospital on Saturday, April 9th. That means
her total stay this time, was a whopping 6 days. We absolutely have to stop going
for new records every time we go there!! Although, we truthfully have exactly no
room to gripe. Our friend, Zayla, beat our 14 cumulative days, with an 18 day
straight stay. (I'm not sure how her mother didn't come home a drooling idiot...)
So, we're learning to look at the upside and to definitely never taunt the "Chemo
gods" again with a "We-haven't-been-in-the-hospital" dance. Yeah, I completely
take responsibility for the bad dancing, and the cardinal sin of taunting the
afore-mentioned gods. Lesson learned...'nough said.
Avalon went in this time because of a fever and dehydration. I called the
Heme-Onc Clinic Monday and told them I thought she was very dehydrated.
Turns out, I was VERY right. In fact, as we sat in the clinic, Avalon's temperature
continued to rise. No question, we were in for at least a few days.
You may remember that Avalon's current phase of chemo consisted partly of
chemo infusions of Ara-C, given at home. On Friday, April 1st, I had to take
Avalon in to the hospital - because her port was bleeding. We de-accessed and
then immediately re-accessed her, so we could finish the weekend's chemo. On
Sunday, I was supposed to take her back to the hospital to be de-accessed
again. Truth is, I did take her - all the way to the parking lot. As I began to get
out of the car, I realized that I hadn't brought my saline and heparin with me, for
the nurses to be able to do the de-access, so I had to turn right around and come
home. On the way home, I decided that nothing happens by accident, and that I
should take this as a sign to call in to clinic in the morning. Apparantly, my red
flag was right on par.
The Ara-C itself can cause the fever we were admitted for. Unfortunately, so can
an infection - and there is no way of telling the difference between the two. In
addition, Avalon had just recently finished anti-biotics for her port infection - and
port infections are notorious for springing back to life a few days after antibiotics
are done. Therefore, the docs chose to put Avalon back on Vancomycin, just in
case the fever was port-related. Skippy, we were back to square one.
This time, we were admitted directly from the Heme-Onc clinic, so they made sure
we made it to the Heme-Onc floor. We were actually quite lucky, and got a Bone
Marrow Transplant (BMT) room. Because BMT kids are usually in for months at a
time, the rooms are quite a bit larger than the normal rooms. Ours even had the
bonus of a toddler table and chair, which Avalon loved. The biggest bummer, was
that thanks to the fever, Avalon wasn't allowed to leave the room again. However,
after being "locked in" the last visit...Mommy is quite a bit smarter and now takes a
coffee pot with her - to stave off those can't-leave-to-get-coffee headaches. I'm
getting better at packing!
In addition to the fever, Avalon was also in the hospital for her amazingly low
counts. The counts are part and parcel for this phase of chemo - but they do
require lots of intervention to keep the little people going. Avalon had blood
transfusions on Thursday March 31st, Tuesday April 5th, and Friday April 8th.
We thought she was going to need a platelet transfusion as well, but she
managed to squeak out of that one (by a knat's hair). Thanks to the fever, low
counts and no appetite, her IV was also desperately necessary. Frankly, I was
glad to be there - its scary to have a little person that sick at home. At least in the
hospital, you have a sense of security. Back up - is just a buzz away...
Thursday was Avalon's last recorded fever, so she was allowed out of
confinement on Friday. In fact, she could have gone home, but we couldn't get
her to eat a bite of anything. We decided we'd better stay in until we could
convince her to eat and drink - at least a little. But no isolation meant we could
visit a friend who was also in-house. Abbey had been there for over two weeks
already, also for fevers and unexplained diarrhea. After runnning dozens of tests,
the doctors determined that her issues were all count-related - so they released
her from isolation as well. That allowed us to get the girls together for a little
"tea-party".
Many of you may remember Abbey's mom from my diagnosis letter. Although I
didn't call her by name (Kim) - she is the mother who reached out to me and
pulled me back from the darkness. Its hard to describe the bond I feel with this
family. We would have liked each other had we met on the street, or in the park.
They are very similar to Nick and I. But I feel so much closer than that. I feel
invested in Abbey, I truly adore her. Heme-onc is a very different place than
anywhere else in the hospital...we truly are a family there. Each of us cares about
each of these kids. I've stopped and hugged complete strangers in the hall, just
because they looked like they needed it. I've never failed to be hugged back.
Abbey's had a rough road, and has spent weeks upon weeks in the hospital. Our
family never has the right to complain about our visits in comparison. Anyway, we
happened to be "lucky" enough to both be freed at the same time, so we were
able to get the girls together. They were adorable!! Abbey had not been eating
either. But we put the two together...and wham! they got hungry. OK, they only
took a few bites, but it was more than either of us had seen in a week. Best of all,
they thoroughly enjoyed each other! They babbled, and we had not the slightest
idea what it was about. Abbey shared stickers and toys with Avalon and Avalon
flirted with Abbey's grandpa.
As the girls sat on the bed, Kim and I danced, pranced and made complete fools
of ourselves singing Itsy Bitsy Spider, If You're Happpy And You Know It, and the
all-time favorite, Wheels On The Bus. The girls grinned, Avalon boogied, and
random nurses and PCA's snickered as they walked past. It was so much fun to
be "normal" for a few minutes - I'd have danced naked in front of Yankee Stadium
to get those smiles. A friend who understands can mean the world, even when
you're short... Just look at those grins!
To help Nick and I out, my Mom took Friday off from work, and my parents took
the girls for a 3-day weekend. Nick came to the hospital after work on Friday, and
we stayed up until 4:30 a.m. working on taxes! Our night nurse kept coming in
and laughing...harder and harder as the hours stretched on. Somewhere in
there, it occured to us to ask her about Avalon's anti-nausea medicine. We
wondered if she was getting enough of it, or if she needed more to be able to eat.
We discovered that she hadn't been receiving it at all...the intern had written the
order for PRN - per needed. Therefore, everytime we had asked about it, we had
been correctly told that Zofran was ordered. However, no one had thought to tell
us it was "as needed". Bad call on the intern's part...infants have a difficult time
saying, "Excuse me, l feel like puking, may I have some anti-nausea medicine
now?" Get real.
Once we figured out the snafu, the nurse agreed to give her Zofran at 5:00 am to
see if it would help Avalon eat. Funny thing, she woke up Saturday morning and
said, "Good morning, Mommy!". She chased that with eating a bit of breakfast,
and bought herself a ticket home. So, we finally got to sleep in our own beds
Saturday night. I should have caught you all up then, but it was just wonderful to
be at home.
Sunday, Grammo and Pappo brought the girls home and we had a wonderful
family reunion - not much time for emails. So that brings us to today, Monday.
Avalon had a clinic appointment today, to check her numbers. Frankly, we all
presumed she'd need another transfusion today. Wrong! Not only was her
hemoglobin great, but her platelets were fabulous and her ANC was up from 0 on
Friday to 550 today! Knock me down with a feather! I still can't get her to eat
more than a bite or two, but I'm working on it. All things considered, its been a
pretty great day. I haven't attached any pictures to this email, but there are
several pics on the website (www.avalonsarmyofangels.com). Under "Our Story"
look at pages 37 & 38. I hope you enjoy them!
I want to say a special thanks to the kind people who sent Avalon e-cards during
our stay. She really enjoys them. The cards make her room so much more
cheerful! You'll never know how much a few computer clicks can change her day.
Thanks also, for all of the prayers and positive thoughts. We appreciate them all.
Love to ALL of you!
Alicia, Nick, Aurora, Ambrosia, and Avalon
packing. She's smart enough to bring
a table and chairs for Abbey. We're
going to swipe her brilliant idea for our
next stay.
hospital room is a little girl's dream
room...pink, pink, and more pink!
"discussions". I'd give anything to
have a clue what they were about!
music! Best of all...making memories...
nurse's aide (p.c.a.). Avalon came to
love Liz and several other nurses. Its a
very nice contrast to how scared of them
she was during our diagnosis stay. And
for every hug and "blown kiss" - she gave
them, they sent her 10 times the love
back. Words cannot say how much I
admire and appreciate them.
