On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Thursday, November 5, 2015

Phoebe has been doing pretty well. She is getting stronger and is awake and more alert during the day. She often wakes up in the wee hours of the morning too - asking to watch a movie with popcorn - all good signs that she is feeling better. She is still needing oxygen, but her breathing has improved and she hasn't had any fevers.

Tomorrow Jon will go to the blood donor room to harvest granulocytes for Phoebe. My run of 29 granulocyte donations has come to an end and it's bittersweet. I would have continued to donate for Phoebe as long as I could, but each week I gave I was a bit more tired with lower iron. I still would have kept going, but when they retested Phoebe's blood for antibodies, it showed they were still present and the signal was stronger. This suggests that Phoebe is making these antibodies which suggests that somehow, some of her own cells have managed to recover after two transplants and everything else. Her body is rejecting my red blood cells or any A+ red blood cells, which means she is transfusion dependent because any red cells that her transplanted cells (my cells) make, she essentially destroys. It also means that she can't receive my granulocytes because they also contain red cells. All of this is complicated and very rare and we were always told it was impossible for any of Phoebe's original healthy cells to survive. I know this might sound positive, but because Phoebe's cells are what originally and continue to make leukemia - even if what is there now is healthy, it is not really a good thing.

Jon's granulocytes will go to work on the infections Phoebe has, and this is good and needed, but giving them and this latest news complicates things for any next steps that we were holding on to. My frozen stem cells that we were hoping to give to help give Phoebe a boost also contain red blood cells, so they would also be rejected unless Phoebe stops making these antibodies. There is also a chance that she could start to reject Jon's cells too.

For now, we will focus on the progress Phoebe has made and continues to make. She is strong and feisty and happy to be feeling better. She is excited to be getting her Daddy's cells and we know they will work their magic.

1 comment:

  1. Hoping and praying that her daddy's cells do their magic! So glad she is feeling better and watching movies and eating popcorn! Continue feeling better, sweet Phoebe.