Tuesday, September 20, 2011

update 9/21

At the mostly polite, definitely insistent encouragement of so many of y'all, I am checking in. Miss Piper has fallen asleep tonight before 10:00 and I have completed reading my issue of People magazine so all my procrastination techniques have expired. Not that I don't have things to update but rather I have the uncontrollable desire to begin raging/tirade/complaining about on here.

I wont, but I do that sometimes these days.

So Piper is well. She received 52 doses of chemo within the 28 days of this round. Amazingly she all but sailed through it without any major issues. A few low grade fevers were quickly abated with Tylenol and nothing has grown on any cultures done. Her CMV continues to lie dormant. Physical, occupational and speech therapies typically go well and she is using her new walker like a pro. Her hair began the falling out process but she is rocking the baby chick look. Pipers appetite vanished once the mouth sores began but she is slowly beginning to trust food again. Lortab has been a friend at times as she just generally felt bad.

Oh and she got 2 of her two year molars.

Oh yes...while on Lortab.

So, that was nice.

As some of you know, Chad, Linley and I's HLA typing came back and none of us are a compatible match for Piper. I'm not sure whether to feel relieved or despondent. Frankly, with the high rate of relapse with Piper Im not sure if I wanted this to be on Linleys sweet six year old shoulders anyways. Apparently there is no evidence saying that a related donor lessens the chance of relapse but a related donor does make things less complicated, both medically and time wise. At this time we are awaiting results from the bone and cord blood banks...our oncologist feels confident that we will be able to find multiple donors for Piper. Many people have asked to donate to Piper and unfortunately it doesn't work that way...not that I am entirely clear on how it works but go to www.bethematch.com and learn more.

We are still at the hospital because it is taking a ridiculous amount of time to have her counts rise to a level that is first, high enough to do the lumbar aspirate and see if she is back in remission and two, high enough to safely go home. Pipers ANC is still hanging out between 10 and 30. A normal child's ANC is between 2500 and 6000.

(Oh that Piper, shes always trying to get a little more attention.)

Once her ANC reaches at least 300 she will have her lumbar aspirate and we will see if those 28 days did the job. Then, hopefully we will be able to take her home for a few days and the Doctors both here and at Egleston will be able to give us a road map or a plan of attack, if you will.

And I will.

I am weary of this phase. "Attack" sounds good. "Attack" also sounds promising. I'm ready to get moving and get attacking and hopefully, prayerfully someday we will look back at this and rejoice we had the strength to put on our fighting gear and give it all we could for our sweet girl.

This strength is not ours but given to us from God...I cannot imagine going through this without the raw ache in my soul being filled with His hope and promise. His goodness is shown in the giggle of Piper at bedtime, in the presence of a Starbucks in the hospital lobby, the sweet smell of my 10 week old nephew sleeping on my chest while we reside in the same room as we did when Piper was first diagnosed at ten weeks old. His goodness did not end when my life began to feel a struggle, in fact it truly began then.

In this struggle I have learned to love, trust and rejoice.

That is a goodness I will never see anywhere else apart from in Gods grip.


  1. Thank you once again for inspiration. Your words move me toward that which is lovely.

  2. Glad for an update... as always, you encourage and inspire!!

  3. love u susanna....my heart of Gold sista...muah!