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.

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.

1 comment:

  1. Ahh, playing with Mae is awesome! Praying for more smiles and more victories, even if tiny! Big, big hugs to all of you!