Fun, Fun, Fun Day for Avalon
First of all, Wednesday, June 1st, was Avalon's big sissy's birthday. Ambrosia is now a
whopping big 4 years old! Wahoo! She's adorable, in love with all things Cinderella and furry,
and a dancing, singing wonder of the ages. We hugged the stuffing out of her Wednesday,
and will spoil her rotten with our family party this Sunday. I'll put pictures on the web site after
Sunday's party.
Second, our little e-family has grown by one. Elizabeth Jane McQuade made her debut
Thursday, May 26, 2005. She is a healthy 8 lb 6 oz, 22 inch long bundle of joy. I'll do my best
to pester her mommy for a newborn, squishy face picture. Can you ever look at too many of
those? ;-) We send her family hugs, hugs, and more hugs. Kiss her once for all of us...
As for Avalon...well, good news abounds. The story on ALL aired last night on our local CBS
affiliate. I knew I loved the reporter...it was fabulous! For all of you who don't live here...guess
what? The station put the entire report on their website. If you click the link below...you can
watch it! Neat! However, please excuse me...I am seriously not a person who should be seen
on TV...bleck. My girls, however, are adorable. Hee hee hee...I'm giddy about the report.
Girl Gets Extra Help Beating Leukemia
http://www.10tv.com/Global/story.asp?s=3424563
Somehow, the stars were aligned perfectly for Avalon yesterday. She had three appointments
yesterday morning: bloodwork at clinic, a surgeon re-check from her port removal, and an
MRV to study her veins for the possibility of re-implantation. Avalon has been feeling very
under-the-weather the past few days, so Nick also arranged for a check-up by her nurse
practioner to make sure she was OK.
The bloodwork went smooth as silk. The PICC line drew blood perfectly. The nurse, Jackie,
was thrilled to hear that our home health care nurse was coming to change the PICC dressing
on Friday. She hated doing it, she's still trying to convince Avalon to like her again. After the
draw, Nick headed two floors up to the surgeon's office.
Dr. Caniano, the removal surgeon, was thrilled with Avalon's chest wound. Avalon doesn't
even need a bandage now. Dr. Caniano said she's too busy to do the re-implantation, but
recommended the surgeon who had done the original implantation of the port. Pending his
review of the MRV, she saw no reason to not schedule surgery as soon as possible. Yippee!
After getting that good news, Nick returned to clinic to wait for the time to go to the MRV.
Shockingly, the lab had already returned the full blood results. That, by the way...is nothing
short of miraculous. Getting the results in an hour and a half, verses the normal 4-5 hours, is
knock-your-socks-off shocking! Nick was able to get in to see Diane and arrange for Avalon's
next appointment, all before he had to go downstairs for Avalon's MRV.
Avalon's ANC was 1400. Great! Her hemoglobin and platelets were fine too. All good news.
Yes, we're concerned about her lethergy, crankiness, and lack of appetite. But Diane agreed
with us...we think she's just fighting a good old-fashioned cold. We all know how blah they can
make we normal people feel, so there's no doubt she's icky. Hoever, a cold won't land you in
the hospital for a week...just on the couch until you beat it. I'll take that any day!
After loading up with more good news, Nick and Avalon headed down for the MRV. The
procedure went quickly (less than 30 minutes) and Avalon handled the anesthesia well. In
fact, the only problem was that the end of the procedure coincided with her normal nap time.
Avalon decided she liked the sleepy stuff and didn't want to wake up! I see her logic... The
nurses did to - but they couldn't release her until she woke up and showed them she was
functioning normally. According to Nick, that took some work. They eventually had to break
out the cold washcloths for her face and feet. She was less than thrilled. The nurses
apologized to her, but apparantly, she wasn't feeling very friendly toward them. Too funny!
While Daddy and Avalon were having their medical morning, Aurora, Ambrosia, and I were
running our own errands. Aurora had a cavity filled, and it too, went quickly and perfectly. We
then ran to the library to get books for Aurora's last few school assignments, and to the dance
store to finish what she needs to wear for this weekend's ballet performance. Whew! Wham,
bam..done and home. We all met up at home for a happy news swap fest.
The best news came a few hours later. The surgeon's office called to say they were ready to
schedule Avalon for re-implantation. Yeehhaaaa!!!! My heart sank when the secretary said
the doctor was currently scheduling into the 3rd week of August. I nearly cried. However,
again, I owe the Heme-Onc doctors my sanity. The secretary went on to say that we could go
with Dr. Jaeger's (Heme-Onc attending) recommendation of the week of June 13th. I may
have frightened a few gray hairs onto the poor lady's head with how quickly and loudly I
shrieked "Yes!!"
The two surgeons that had already worked on Avalon were seriously over-booked, but there
were others in the practice that had availability. It didn't take a milisecond for me to agree to
anyone. Between Aurora and Avalon, we've had three surgeons from the practice. They
have all been thoughtful, kind, and consummate professionals. I trust anyone they work with.
The secretary really didn't have to take the time to tell me how much she liked the guy. If Dr.
Jaeger recommended him, and he works with the 3 we know... We were already 100% on
board...it was an easy sell.
The result of yesterday is that Avalon will get her new SIP (subcutaneous infusion port) on
June 13th. She'll get to be PICC free for the June 14th Circle of Friends event, and more
importantly...for the Summer. I guess we're going to have to look at replacing the pool afterall.
Aww shucks, what a tragedy! I absolutely can't wait for Avalon's first marathon bath. It will be
great to not have to hide and bathe Ambrosia.
All told, it was an incredible day. My only gripe is the amount of sleep I lost working on the
website the last few days. I thought Channel 10 was going to link to it, so I worked like crazy to
add a bunch of stuff. If you want to see my additions, log on to www.avalonsarmyofangels.com
I put several new Heme-Onc angels, our dinner fairies, our Build A Bear angel, family
descriptions of us, a new How to Help section, and I'm working on the Avalon's Army
description. Give me a day or two before you check out the Army section...I want to do it
justice. The biggest problem is that for every 2 things I add...I can think of 20 more I want to. I
have angels galore that deserve to be recognized...eventually this site may take over the
world...
Avalon's next big adventure is this Saturday night, June 4th. We will be interviewed as part of
the local coverage for the Children's Miracle Network Telethon. Our interview is scheduled for
10 pm. I know its late, but we were going to be downtown anyway for Aurora's dance recital.
They have a hard time finding families to do the late stuff...so we were happy to help. The
interview will be conducted at Children's itself, and will be a part of the local broadcast. You
can see the telethon, and us, on Columbus' Channel 10. I'm going to do my best not to lose it.
I've found out that I'm rather unaccountable in that area. I can be fine for 90% of an
interview...and a complete basket case for the rest. I need to improve that...
I hope this letter finds all of you healthy, happy, and basking in as much good news as we are.
Sakes alive, its nicer to write these happy go-go emails than the mom-is-losing-it ones. Let's
hope thse are the norm for a while!
Love and hugs to ALL of you!!!!!!!!
Alicia, Nick, Aurora, Ambrosia, and Avalon
