|April 25, 2005
Avalon's birthday in the hospital,
and continued stay there...
Hello my amigos...
Let me try to bridge a few gaps for you....
You all know that Avalon had to go back in the hospital on Thursday night, April 21, for a fever.
She turned two, sitting in an isolation room in ER. I cried when the Heme-Onc doctor told me
I'd have to take her in, I cried when I called and told my family we were going, I cried when I
emailed all of you, and I cried even harder when the ER doctor asked me how old she
was...and I told her "She'll be two in five minutes..." I admit it, this one really got to me.
The ER staff did their darndest to make it better. The people who took us up to her room sang
"Happy Birthday" the whole way up. They made a huge fuss about telling her nurses it was her
birthday...and they even came back to her room a few minutes later with two enormous
balloons and a gift bag filled with coloring books and bubbles. They did their absolute best to
mend my broken heart and make her tiny two year old heart sing. Actually, they did make her
sing. As I was calling Nick (at 2 am) to tell him our room number...Avalon was sitting in her
bed, singing "Happy Birthday" to herself. Can you guess? Yep, I cried.
During the day on Friday (her birthday), the entire staff made a huge fuss over her. The unit
clerk pulled a few dozen strings and convinced the volunteer department to print out the
birthday e-cards that people sent to her. Wait until you all see the pictures of the walls of her
room. We've nearly wall-papered the thing with e-cards. She loves every minute of it! I took
pics of her playing with cards...eventually I'll get them all posted.
However, pics and the web site will have to wait for us to come home...and that won't be for
quite a while. Avalon's port grew staph bacteria again. Worse, it grew staph after being on a
Vancomycin IV for 3 days. Translation...the port has to go. So, here is the course of her life
for the forseeable future...
- Stabilize her
- Surgery to remove her port (in a few days, we hope)
- Under anesthesia, put in a peripheral line so she can continue to receive IV fluids and
- Continue with Vancomycin IV until we have three negative cultures (each culture taking more
than one day to properly grow - so this may take a while
- Surgery to put in a new port
- Wait to make sure port is safe and healed
- Finally get to go home.
The real time frame? Week to two weeks. The cost? Astronomical - both financially and
I finally have to admit it, I'm wiped. I miss my other girls so bad, it hurts. I'm so scared about
Avalon, I'm paralyzed. I'm so stressed about money, time, Aurora's school, Nick's jobs, our life
in general...that I'm truly just done in. I'd be kidding myself if I didn't think you all have seen
this coming. Let's face it...I'm not exactly 007 when it comes to hiding my feelings. Each
hospital visit has been more taxing, each one more demoralizing. Yeah...I'm so far past the
end of my rope...I'm grabbing at the strings at the end of the knot.
I have absolutely no right to complain. There are families on the floor 10 times worse off, I
realize that. There are children there that are visited by no one, or that no matter how many
people visit...won't ever go home. I know that all too well. This time around, some of that
sadness has found its way into my heart, and frankly, its like finding my way back onto that cliff
I talked about at diagnosis. Again, I find myself sharing this with you. Not to hurt you, or scare
you. I just want to be honest in this journey we're on together. I appreciate each of you who
choose to walk this path with us. And I wouldn't be true to your gifts of spirit, if I didn't share
the bad, as well as the good.
As for the good, thank you to each and every one of you who took the time to send Aurora
birthday greetings, both through e-cards and through the card-party. We got to "meet" some
of you through personal letters and pictures. Its been wonderful to get to know you! I really
hope to be able to hug each and every one of you someday... Your letters and pictures are all
currently hanging in Avalon's room. The nurses are flabbergasted that we are welcoming all of
you into our lives, and that you're choosing to join us. They say they come to our room for
The art work from the children is absolutey fabulous! Its strange how much we've come to love
your kids...I brag about them to every nurse who comes to see our room. I have to point out
our Noodle N, or our doctor's bag, our special Big Bird coloring book pages, or our handmade
get well greetings. Blobs of paint and scribbles of crayons never looked so elegant. In
reality...our walls look a little bit like a pre-school meets a humane society! We have cat and
dog faces galore grinning at Avalon. My personal favorite is a handsome German shepherd -
whose picture was included because he's about to swipe Grandma's birthday cake! I snicker
every time I think about it. Of course, other friends were not to be outdone, so each of their
cats sent a personal, separate greeting. Too darned funny!
Basically, if there ever was a room to have to spend a few weeks in, this hospital room is it.
The nurses are saying its the best room they've ever seen. We've got balloons, e-cards,
birthday cards, letters, pictures, and drawings all over the walls and doors. Avalon's bed has
her favorite stuffies and some new ones that were gifts from beloved staff members. Yes,
against all the rules...nurses love these kids enough to give them presents. Is it any wonder I
In fact, one of Avalon's saddest moments from her birthday...is one of my favorites. Avalon's
port had to be accessed (needle put in) in the ER. Unfortunately, the nurse got the needle in
very crooked. It had good blood return, so we decided to leave it, rather than poke her again.
Although we had sound logic, it ended badly for Avalon anyway. The needle only lasted a little
more than 12 hours, and it came out of the port - allowing fluid to leak into her skin and cause
her pain. When we went to de-access her, the needle just fell out. The major problem was
that we had to immediately re-access without the benefit of numbing cream - we were worried
about the port clotting. The entire deaccess/reaccess procedure was very painful, and very
terrifying to a certain birthday girl.
Because Avalon's day nurse had just met us that day, another nurse, Tiffany, volunteered to
be the "bad guy". Tiffany works both on the floor and in the clinic, and has a long history with
Avalon. In fact, Avalon adores her. After the entire ordeal was over, and Avalon was
sniffling...I asked her if she would forgive Tiffany, and if she still loved her. Avalon said,
"Uh-huh...love Tiffy". Tiffany smiled at her and said, "I'm so glad. I love you too, Avalon." And
she meant it. I don't know how to really convey that to you.... These nurses love these kids,
despite the emotional toll that takes on them. They give their hearts to these kids, and really
mean what they say. Gee, can you guess what I did that night as I thought about it? Yeah, it
was just one of those days.
So, that's where we are now. Avalon will be in the hospital for quite some time. She feels
awful, and will feel worse before she'll get better. She is extremely lonely, and missing her
sisters terribly. We both are. She is in room 5312 - our phone number is 614-355-5512. You
are welcome to call, I appreciate the distraction. If I don't answer, a nurse or doctor may be in
the room, or we may be out walking. Avalon has decided its lots of fun to walk around the halls
in her feather boa and crown, or wearing her knit scarf, or in her new hat with her new Dora
backpack...anything to make her "pretty." She loves strutting her stuff!
What can you do to help? Well, prayers, postitive thoughts and wishes are never overdone!
And we're finally having to admit that we really are beginning to sink financially. If any of you
have ever thought about doing a fundraiser...we really would appreciate it. Nick is killing
himself trying to figure out how to work, be mom and dad, try to make two big girls happy, and
yet not worry to death about his little one. He even had to work on Avalon's birthday. Avalon
was in the hospital, our kids were with a friend, and he worked. Not exactly a great family
day...and we really need a few of those right now. I hate having to ask...but we're really
stressed from every single angle at the moment, its almost too much to even figure out how to
One more thing before I run...I want to say a special thank you to those people we don't "know"
who sent birthday greetings. Greetings came from Colorado, Canada, and heaven knows
where else. Not that its hard to do at the moment...but each time a stranger wrote "Love" for
my little girl, I cried. Except this time, the tears were from abject joy and wonderment - that
someone I don't know, would give their heart to our child. Those tears... I'll welcome any day.
I welcome each of you into our family, and want you to know...we love you too. Your strength
and selflessness, make this journey bearable.
To our family and friends that help us keep our older two girls safe and emotionally secure -
words will never be enough. As much as I miss them, I know you all love them deeply. I know
they're safe, I know they are being cared for, and I know they're lucky to have you. I
appreciate the sacrifices you're all making on their behalf. If you're not careful, your wings will
get so big, you'll have trouble walking...
I hope you enjoyed the baldy pictures! Those were taken Wed night, April 20th - before
Avalon started her next phase of chemo on the 21st. Who knew we'd be back in 24 hours
later? I took a few minutes to be able to forward them, sorry I didn't send an explanation with
I won't be able to update the website with pics for a while, so bear with me...
ALL of our love to ALL of you!!!
Alicia, Nick, Aurora, Ambrosia, and AVALON
Avalon's Army of Angels