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.
Tuesday, November 24, 2015
Friday, November 20, 2015
Wednesday, November 18, 2015
Monday, November 16, 2015
Sunday, November 15, 2015
Saturday, November 14th
Thank-you all for the love and prayers and messages of support - I believe Phoebe can feel the love and that means the world to me. I was going to wait to update because things are so unpredictable, but I know that you love and worry about Phoebe too.
Last night was so hard and very little sleep was had. We spent the night trying to help Phoebe breathe better. Listening to her grunt and struggle and try to get comfortable. She was placed on high flow oxygen via a nasal cannula - this took some convincing and negotiating as she didn't want something in her nose, but she finally agreed. It took some time for her to settle and today has been very up and down, but overall her breathing has improved although it is still fast. Her heart rate and blood pressure have come down (both were high), and she has managed to maintain her oxygen saturation - although it's at a high setting.
The colitis appears to be a bit better and Phoebe's belly is less distended, but her pancreatic enzymes are more elevated today. We hope they show some improvement tomorrow.
There are blasts in Phoebe's blood, but the doctors are not convinced it is disease progression. They think that her body could be in shock and her bone marrow could be producing everything and anything it can. Right now leukemia is probably the farthest thing on our mind - there are just too many life threatening issues at play.
We are clinging to hope. Phoebe is more comfortable. She slept most of the day, but when she was up she played on the iPad with Mae. She hasn't played with Mae in weeks and her big sister really needed this. We are grateful for each day, each smile, each tiny victory, every moment.
Friday, November 13, 2015
Thursday, November 12, 2015
Monday, November 9, 2015
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.