Friday, February 24, 2012

Settling in at St Jude

Piper still has this wonky rash. The skin biopsy from Wednesday came back inconclusive, meaning it may or may not be GVHD. To which I say... Seriously??? So the doctors continue to be baffled by it and continue to say it looks more like an allergic reaction than anything but they can't rule out GVHD. Nothing changing there except it continues to spread and now covers her face. It's so very bad and she constantly asks to have her back scratched... Oddly, nowhere else on her body seems to bother her. Benedryl is her friend.

If you remember, Piper also had a Bone Marrow Aspirate done on Wednesday. The good news is that there was no leukemia found... Of course, there was no leukemia found because her counts are still bottomed out from the chemo right after her relapse. This is actually good though as it means the chemo did something... Hopefully lots of something. We are still awaiting the MRD ( minimal residual disease) results and the flo-cytometry results and oddly we hope they find leukemia hiding. If they do not, Piper will not fit the eligibility for this trial but thankfully/sadly Pipers leukemia is aggressive and surely will be found.

I have spent the better part of the last 3 days running from one appointment to another in an effort to clear my body and health as eligible to be Pipers donor... Both for the NK cell transfusion and for the Stem Cell Transplant in a month. Today I was given the "good to go" after my physical so unless something shows up in my bloodwork the day prior, I will be ready to give and even more ready to pray that this is effective.

Linleys is a trooper running with me around town. She loves all the evening activities they have downstairs at the Grizzlies House and enjoyed a ride with her daddy tonight in a Cinderella carriage downtown. While we are not doing formal school right now she is working on daily math facts on the iPad, learning the spelling words I chose this week and doing creative writing in her journal each night. We are still looking for a tutor a few times a week here in Memphis to work with Linleys wonderful teacher from home to keep Linley up to par. She is a smart girl and I worry about her falling behind... If anyone has a contact here please email me

We are loving our place at the Grizzlies House. It is equipped with 2 beds, a bathroom, a small living/eating area and a mini kitchen. Even better, they still daily clean it for me. What a huge blessing for this ocd/clean happy mom. Our room there is actually straight across the parking lot from Pipers room inpatient...we enjoy flashing the lights at each other at night and surely keep some security guard either nervous or smiling. Oh, and I found a Target so I officially feel at home.

Our biggest prayer requests after hoping for Pipers cure, is sleep and rest. We are very weary and attempting to adjust to life here in TN is exhausting... As I often do, I praise God that Linley is so wonderfully easy to be with, despite how hectic her life is now.

I will have a mailing address soon, to those who have asked for one. And a million thanks to those who have sent Starbucks cards to me via Facebook... You're the fuel to our day!


  1. I'm a childhood friend of Erin Hackett and through her post on FB I have been keeping up with Piper. I'm now following your blog and just want you to know that we are praying for your sweet girl as well as your entire family. I hope you have a good nights sleep, God Bless You!! Prayers and Hugs,
    Aledia Hammons

  2. I hope you don't find this weird, but I came across this blog while I was bored in school the other day (at this point I am sure you would LOVE to be bored surfing the internet and I have not taken that for granted since!)But anyway I have been praying for you amazing family since then. I saw that your family has made a move to St Jude and may need a school for Lindley. During childhood cancer awareness month I came across a fundraiser page for childhood research and since then have followed their blog. They recently returned home from St Jude and talked very highly of this school called "Maria Montessori". They have two boys one is probably around Lindley's age and the boys have popped in and out of the school for two years when their family has had to come back for relapses ect. I don't know any details of it other then they teachers work really well with their other schools and maybe if these boys have been coming and going the class would be receptive to a new student. I hope this helps and I will continue to pray for your sweet family

  3. Oh sweet Piper, prayers are continually lifted up for you! May you get ALL the rest you need sweet friend.

  4. Thinking of you everyday and sending hugs to all of you!
    Love, Daaaaah-dra

  5. Continuing to pray...and so glad you found a Target!