Thursday, March 1, 2012

Chemo tomorrow

This will have to be short as I am exhausted and the ever so comfy sofa bed is calling my name.

Pipers bone marrow aspirate from last week was inconclusive due to a lack of white cells due to the prior weeks chemo... Keep in mind no one was expecting to not find leukemia but because this is experimental stuff here, there are many T's to cross and I's to dot... On Monday she had a repeat aspirate done and while that sample was also difficult to read due to clotting seen in the machine, they were able to manually look at the sample and see "a large amount of disease"... Which is what is necessary to begin and so yesterday afternoon I signed many consents as both Pipers donor and as her mother.

In following the eligibility of this study she would have been able to begin today but they are still awaiting results from the battery of infectious diseases she must be screened for...nothing to my knowledge as a specific concern. Because there are so many things to screen for, there are so many vials
of blood necessary...and this has to be done over a few days in order to not deplete her body of too much hemoglobin at a time. As it is she has been getting blood products every few days. Thankfully this is not uncommon and surely doesn't phase me.

Tomorrow we should be good to go. Five days of three different types of chemo; cyclophosphamide, clofarabine and etopisode... All pretty intense so the week post chemo should be rough. And I will be doing my NK cell donation on Tuesday for her infusion on Wednesday. Post this NK transfusion, Piper will receive a shot of a medication called interleukin 2 ( used to stimulate the nk cells to seek and destroy cancer cells it comes in contact with) every other day until there are no traces of my NK cells to be found, up to two weeks or so. I'm more than scared...while I know this treatment is intended for children with a lot of disease like Piper and that she is an ideal candidate, this whole process is new and foreign and more than anything we are literally at the end of treatment options for her.

If this doesn't cure my girl, there are no other rabbit trails to follow.

This very fact has made my whole soul hurt lately... The unfairness of it all can slam me in the face and yet there are no moments for wallowing in it all.

It must work.

Meanwhile Piper continues to perk up. After a few rough and quiet and moody days she has begun to show this facility what most of us already know...that my Piper is amazing. She is quickly becoming a favorite here on the floor and is wooing most doctors and nurses and therapist who come in contact with her. She has eaten like crazy today and I hope she will continue to have a few good days before the chemo catches up to her. The rash still is bad looking but it is clearing up on her face and she has begun to peel. If indeed, it is GVHD we will see an improvement when chemo begins to attack those pesky cells. If not I have no clue... They are still pretty baffled about it all.

I hope I make sense when I ramble on. My heart hurts today... It marks one month that fellow infant leukemia friend Paxton has been gone from her mommy and daddy. And I also heard from a fellow cancer family back on Ga whose daughter recently relapsed. I grow so very weary of this fight sometimes. Of crying with other mothers and worrying with other families. Of smiling at children who you know have little chance and of making myself chose Hope each day despite the massive odds that are stacked against not only my own child but most of the children we see here each day.

My soul is firm but my flesh is weary.

Come quickly Lord, come quickly.


  1. You are the most incredible mother and Piper and Linley are so very happy to have YOU. Praying that this treatment is the miracle earthly cure for your little angel. Hoping she hangs tough through the chemo and it all leads you to some wonderful, remarkable results!

  2. I know you don't know me, but I have been following your blog via a friend who's daughter also had leukemia. I feel compelled to tell you that you are an inspiration. I'm sure you don't feel like it on most days, but God's spirit shines through you even through such intense pain. Because you have chosen to praise Him you are witnessing to so many and teaching us about life and God. My heart breaks for you and your family and I am praying for the miracle you so badly desire.
    Thank you for your testimony of faith, and know that I am praying, even now, that God will give you the strength you need for this fight every moment that you need it, and that ultimately you will continue to grow in your relationship with Him through this.

  3. Just going to be praying and praying and praying for your sweet Piper, her sister, her daddy and her mommy. There truly are miracles and I am so hoping we will see one for Piper.

  4. We are praying, Susanna. We are praying.

    elizabeth m.

  5. Just wanted you to know that I am also praying for Piper & your family. You don't know me either & have found your blog through another little girl who had leukemia. I hope so much that everything goes well with Piper.

  6. I do not know you personally - however, I wanted you to know that I am praying for you precious Piper, you and your family. Trusting the Lord to move mountains and cure her completely! That He will guide the doctors and nurses, and that we will oneday soon shout from the rooftops - PRAISE Jesus!! Look what He has done!

  7. I've recruited prayer warriors from the MOMS group at Snellville First Baptist. I'm believing for Her miracle. Jesus be glorified!

  8. I am praying for you and Piper. It was a GOD Incident that I met you mother-in-law on Thursday over the phone. She was calling to schedule her termite inspetion on her home and she told me that she was at the time in Memphis at St Jude Hospital with her granddaughter. My heart sank because THE NIGHT before, we were having prayer request and my daughter , Anna Dudley Parker told us that "Piper and her family" had just went to St Judes and we had been praying for the last month, but Anna was giving us an update. As I spoke to your mother-in-law, I just KNEW it must be Piper. I asked her, What is your granddaughters name, and she said Piper! The tears just flowed for me, but I don't know if she could tell thru the phone. I told her to let you know that New Testament Baptist Church in Loganville was praying for your daughter and will continue to BEG God for a MIRACLE. Our daughter at 21, Sara Dudley went thru cancer just 5 years ago, it was a very hard time, but NOTHING like what you are facing. All I can tell you, as I wipe my tears, GOd is so faithful, HE is never early and NEVER late, but right on time. HE is the ONLY one that can hold you up when you can't put one foot in front of the other. My heart hurts with you and just KNOW that we are praying for you all!
    Patricia Dudley, Loganville, GA

  9. My heart hurts for and with you. I love you dear wonderful friend and I only wish i could carry this burden for you.. Sometimes i ask the Lord if only i could take this pain from Piper and you i would do anything for her. I know this is your heart and i cry because i cannot take the leukemia from her. but i continue to pray and know that although i don't see the future i serve a Good and Faithful Lord who does...
    Susanna you can do this. You are not alone.

  10. I also don't know you or Piper, but I was introduced to your family through a friend on Facebook. My family prays for Piper every single night. We pray for a miracle to be performed through the doctors at St. Jude. Piper's pictures show a little girl with a giant's spirit! I can see Christ in her face, and it is my honor to petition our Saviour on Piper's behalf!

  11. We met your sweet Piper during our stays at Scottish rite with our daughter addyson. She is such a joy! I will never forget playing in the playroom with addyson and seeing piper walk by the window. As she walked by she blew addyson a kiss. It was the sweetest thing I have ever seen! That's the day addyson started blowing kisses, even though our entire family has been trying to get her to do it!

    My heart hurts so badly for you! I can not get through any of your posts without tears. We continue to pray daily for both Piper and your family!

    Chris & Lauren Vardaman

  12. I can only imagine how weary you must be but your perspective continues to encourage me. My heart breaks thinking of all you and your family are having to endure. May you continue to fill your mind with truths of who God is. Love you and praying for your sweet family.
    Love, Christina