Because We Love Her

Friday, June 27th:

June 27th, 2008 Posted in Daily News Post

Hello all, Dana here with an update.  Its Friday, June 27th and I know this because Chloe asked Daddy to write the date on her board.  This was helpful!

The name of “Fred” (the tumor) is medically speaking: Juvenile pilocytic astrocytoma (glioma)

Chloe’s first decent day came yesterday as she had a reprieve from the high fevers even though its still hitting around 100.6.  She and I went down the hall to the starlight lounge (okay so this is a little theatre created by Hollywood video complete with big screen/velvet red curtains/comfy red leather chairs and twinkling stars on the ceiling) about 845pm last night and we sat together in a chair per her request.  This tells ya how little SHE is.  We watched the last of the film, Nancy Drew.

For me this seemed a HUGE deal.  It showed an interest in life again.  We stayed up till the last of the medical routine was completed, around 1:00 a.m.  The reason for this is her antibiotic schedule.  Harold (the IV pole) beeps when the antibiotic is near end, then beeps again when it’s ended.  I’ve learned the button routine on this pole far to well for a non-nurse.  Our best window for sleep is from 1-4am.  Chloe said this first thing, “I got ALL my sleep last night”  and I can believe that.

The doctor’s huddle this am gave us the news that we are still in the hospital into next week.  Chloe still has some other hurdles to cross.  They are really careful here.  And while I’m mentioning my newest family (the medical team of docs/nurses/child life experts/housekeeping/social workers and cafeteria folks) the words THANK YOU to them seem to have taken on a new meaning.  Love is alive here.  I have amazing new appreciation for nurses.  They work 12-hour shifts and still are on the ball, kind and loving.  Always asking if there is something they can do for ME as well.  My hat is off to you ladies and gents.

I also want to thank my place of employment for the incredible gift of time away with nothing other than we miss you and you have a place to return to…. take care of Chloe and we’ll see you when!

The future treatment plan is still a bit vague.  What I understand per this mornings huddle is we will wait 3 months and do another MRI.  Another surgery is not out of the question.  Chloe heard this and piped up” I never want another surgery, ever”.  It’s still her best chances, the doctors say…to remove ‘Fred’ entirely.  They aren’t speaking about radiation or chemo at this time.  Something changed there and I don’t know what.  Perhaps it’s the risk of radiating and causing another tumor, besides Fred.

I had a chance to check out some books on the subject of childhood brain tumors. They are still fairly rare.  Only about 2,200 of them in the U.S. per year and about 3,400 combined brain/spinal cord tumors.  I got this info from a book from 2007.  

So now our wish is for Fred to shrink and shrink and slough off.  Hey, we’ve come this far…why not ask for more?

For all of Chloe’s friends, I do want to say how amazing you are.  She has been looking at each card and note. 

I do think it’s appropriate to end with this.  Chloe has 2 other friends who I won’t mention as I don’t have permission but the three girls created their own Harry Potter Club.  Chloe plays Harry. The other day while in PICU, we received a card from Chloe’s friend and it was the 3 of them…hand drawn as Harry, Hermione and Ron.  Underneath were these words which I love, adore and will keep tight always because I know it to be true…

“Friendship is the most powerful spell”.

Fourth graders ROCK don’t they????

Love and Light,
Dana

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