Friday, September 18, 2009

Friday Evening (9/18)

This has been a long day and thanks for all the prayers, messages and encouragement.
Her surgery went well and she is showing herself to be quite the trooper already. After a bit of sleeping and a little snack she is smiling and cooing. The surgeon was not able to get a good sample of bone marrow so she drew a blood sample to be tested instead. This will take the same 2 weeks to have results. Without getting lingo-y, we are hoping for a good chromosome (MLL) to show up in her blood test and not a mutated chromosome which, according to doctors, makes the leukemia harder to treat. It is very rare for infants under 3 months old to have their chromosomes not be mutated so we are hoping for a real miracle.
The good news is that there were no leukemia cells in her central nervous system...This is apparently one of the 2 places that are most difficult to eradicate. The other area is the testicles and we are certain there will be none there either. :)
We were given our "road map" today, which is the treatment plan. It has Piper in almost 5 weeks of chemotherapy beginning from fairly mild steroids to some heavy duty stuff later on. After her initital month of chemo, she will be coming back here to Scottish Rite weekly for testing and every few months for chemo for the next 2 years. The first 6 months are considered more critical and infection will be our biggest concern.
We are asking people specifically to pray for "no mutation of the MLL gene" sets the stage to know what statistics will be....


  1. I'm extremely happy that there were no cells in her testicles!

    So, is there any indication how long you will be at the hospital for now? A week, two, five?

  2. Thanks for the detailed info - it can't be easy to take all the information being shoved at you and filter it down for us. Hang in there - praying the good news continues to get bigger and better!

  3. Susanna, I am praying. I am asking others to pray. I am believing that God will do a miracle, in Piper and in you all. I suppose I've always seen you as a "friend of a friend" - but my heart is deeply burdened for you and if there is ANYTHING I can do, please let me know!

  4. Susanna, Nakia has been keeping me updated. She desribed you as the girl that she was attatched to at the hip at CCA. Ah yes, I remember all the art classes. I am sad about the news about little Piper but we have a God who is bigger than Leukemia. I work at Emory on the bone marrow transplant floor and have seen many miracles. I am praying for yours. God Bless you and your family. Mrs. Karen Donegan..your sub at CCA many years ago...Nick and Marissa mom if that helps any....