Hello my wonderful e-family! Time for me to pester you again! Shockingly, this one may
actually be brief.
The past several days have been busy, but not very Avalon-centered. Saturday, June 25th
was the Columbus Taps! showcase that I wrote you about. Sunday the 26th, Aurora had a
performance with Kids of Broadway. Monday brought the beginning of dress rehearsals and
the final shows for this KOB season.
Normally, I love helping KOB with costumes, back stage and anything else I can poke my nose
into. These are the best kids, its actually pure joy to be able to spend time with them.
However, for this show - I have had to completely bow out. We were in and out of the hospital
for the first few months of rehearsals, and basically overwhelmed with port replacement, fevers
and paranoia at the end. It killed me, but I had to take Aurora to dress rehearsals and leave
her - I couldn't even volunteer to help out then. Actually it ended up being a darn good thing
that I didn't.
Because Aurora had a performance at the same time Avalon had chemo - Nick and I had to
divide and conquer. When we met back up, the news couldn't have been much worse. Two
weeks earlier - on June 16th, Avalon's ANC (Absolute Neutrophil Count) had been 2045.
Absolutely wonderful. With no warning, and no indication - her ANC on June 30th was a mere
84! Eighty four is not only low, its scary-low. They want our kids to stay above 1000.
Between 600-1000 the kids are susceptible to pneumonia as well as any other bacterial
infections. Below 400, and their ability to fight bacteria is so non-existent, that naturally
occuring bacteria in the gut can escape and attack other body organs. Yes, its really that bad.
So here we are, sitting at 84! I retroactively have had several heart attacks. I have been
behaving as if she was at 2000, so I've been taking her to the mall, we took her to the Tap
Showcase, and I even took her to a local outdoor festival. Let's just say that Momma is not
happy with herself. In all fairness, when I called to discuss it with the nurse practitioner - we
reasoned through where we'd been, and I really haven't done anything too terrible. After all,
Avalon never got out of her stroller in the mall, and we rarely ever shared a store with anyone
but the clerk. As I told you, we spent most of the tap show either outside, or locked in the
vestibule - so no germ exposure there. And the festival was outside, where Avalon never got
out of her stroller, or shared space with anyone. Although I know none of it is too bad, I'm still
leaning toward self-flogging at the moment.
Our biggest concern is about next week. On July 6th we are supposed to be going to Kings
Island with Adventure for Wish Kids. I wondered if we could go. I called Diane (our nurse
practitioner) to ask her opinion. She says that Avalon's blood values indicate that she should
be having a huge jump in ANC within a few days. Diane feels its OK to plan to go, but that if I
am too worried, I can bring Avalon in to clinic on Wed to check her values. Would you like to
guess where I'm headed on Wed?
So that's life at the moment - we're in lock-down. Avalon is not seeing or breathing air outside
of the house until I know she's more stable. We don't even go out to the back yard when she's
like this - too many germies waiting to get her. The other kids are frustrated, but they
understand what we're up against.
Side note, Aurora's KOB show went beautifully. Nick and I went on different nights so that one
of us could be home with the other girls. Aurora's tap solo was fabulous - she really does
have a natural gift for tap. Nick stayed after the last show and helped with set strike. At least
we got to do something! Hopefully, our lives will be on a more even keel for the fall show... We
Love to ALL of you!
Alicia, Nick, Aurora, Ambrosia, and Avalon
Avalon's Army of Angels