Wednesday, February 8, 2012

Relapse. ( day 42 )

Piper has relapsed.

After hearing that she was 100% donor cells on Monday as well as clean bloodwork in the lab that same morning, we had begun the process of dreaming and wishing and hoping. Now we are back to sobbing, aching and questioning.

Why sweet Lord, why.

Piper had her unusual appointment this morning at the clinic for the IVIG sensitive to her CMV and as usual, they drew labs. We were there for 5 hours and I was never told that she had suspicious labs until I was called this afternoon and told that they had sent the suspicious cells out and the results were indeed, leukemia. Again. Dr Haight asked if I minded if she came to the Ronald McDonald apartment to talk and just be with me and then spent the next hour explaining options, choices and tests that will be run to see what exactly we have to deal with. Irregardless of the details this is a bad situation for Piper to be in... Each relapse and subsequent treatment just makes the leukemia more resistant to treatment and less likely to be cured. Best case scenario is little blast in her marrow and none in her central nervous system and worst case scenario is many blast as well as central nervous involvement. Either way, Dr. Haight has begun the process of asking other specialist if there are more innovative options.

I have had a lot of people ask how this can happen if she is producing donor cells and not Piper cells and the answer is that I haven't a damn clue. I do know that leukemia and cancer doesn't play by any set of rules or sense of fairness... I have seen this. I do know that she has done everything so incredibly well and that this even has shocked her transplant doctors who rarely see this themselves. Neither of those things bring me any relief at this moment as I attempt to wrap my head around the fact that my 2 year old still has cancer in the midst of her sweet little body... Still, after two years of chemo, after 6 rounds of total body radiation and after destroying as much of her own marrow and cells as humanly possible at one time and filling her back up with cells of another healthy woman...somehow, leukemia invades.

This is all we know now. Tomorrow morning Piper will be sedated and will have a bone narrow aspirate as well as a lumbar aspirate as well as another blood draw to check her chimerisms again. These results will tell us what Piper is eligible for as far as treatment, if anything. At this time, they are beginning to wean her off of the cyclosporine (immunosuppresion) in hopes of slight GVHD. Unfortunatly GVHD can be fatal if it affects the major organs. Within a week we will see if there is any concern with that. Dr Haight mentioned going back to the donors cells they have stored and using quantities of the T cells to infuse Piper. These T cells are the big guns as far as infection fighting cells and the hope is that they, along with the already existing donor cells, will siege war on the leukemia cells present.

There are no plans at the moment to readmit to Egleston. This has been a blessing as each prior diagnosis and relapse was confirmed when we already were settled into a room in a hospital. This time around we stayed home and my family and best friend came and surrounded us. Piper loved the attention and the entire evening was a nice distraction from what we are walking into now.

Of course, being home(ish) meant feeling the full affect of the emotions rolling in my heart and head. After talking with my almost seven year old I was cuddled up with Piper in bed. So normal and so sweet and so incredibly gut wrenching. She asked for her back to be scratched and while I slowly ran my fingernails down her back, I cried. I cried out of a lack of big hopes and I cried for disappointment. I sobbed knowing we are nearing the end of treatment for my youngest child, baring a miracle and I ached because I love this child with a fervency that both frightens this mommy and settles my soul...she was given to me and she may be taken from me but she will never cease to inspire me.


  1. My heart is breaking for y'all, your in our thoughts and prayers,stay strong, we love y'all....

    Amy Ramsey aka Bubba's mom

  2. I am in tears and am still stunned. I wish I knew what to say. I am praying and still asking for BIG things from God....a miracle for Piper. I love you, Heather

  3. I just read this and my heart breaks for all four of you. I woke up in the middle of the night last night with the overwhelming need to pray fervently for wisdom, peace, strength, and trust in the Lord. Praying without ceasing. Much love from Rome!

  4. I am prayer for you guys and little Piper. I know God is in control and I struggle with his plans. I know he is able to heal and I will pray to that end.

  5. My heart broke for you when I read the latest news on sweet Piper. I cannot imagine exactly what you are feeling and going through but please know you are all in our prayers. We believe and beg for the miracle of earthly healing for your adorable, beautiful girl.

  6. Praying my friend. Praying and thinking of how amazing all 3 of you girls are...

  7. Met you at the Christmas parade, been praying for Piper since I met your Mom in the fall. praying still.

  8. We all are heartbroken that you are having to go through this again. There are no words for something like this. It takes your breath away. But, we love you and are praying for you all.

  9. I am so sorry to hear this. Words can not express--so we send our love and prayers instead. May God bless you and your family.