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, October 7, 2014

Hope today came in a very small and sweet smile from Phoebe, a few sips of water, time in the rocking chair and the first time Phoebe has wanted to be held in days, and the news that the spinal fluid is clear of Leukemia.

The spots on Phoebe's brain are most likely from infection which is terrifying but somehow not as terrifying as leukemia. Unlike we thought previously, this did cause her to have two strokes. One on the left side of her brain and another on the right. The strokes have affected the  movement on her left side and her speech. She is talking but her speech is very slurred. We saw the neurologist today and he is monitoring them closely with MRI to track progress. Phoebe has her next MRI on Monday and they will also be looking at her spine and hopefully doing a bone marrow aspirate.

Phoebe hasn't eaten in over a week and so today we decided to put in a feeding tube. She knows all about this tube and when she heard it mentioned she started to cry and put her hand in front of her nose to block the nurses. It has been two and a half years since Phoebe's last feeding tube and this was really hard for me although I know that it is a necessary step to move forward. I was holding on to hope that Phoebe would wake up and just want to eat. Nutrition is so important and the feeding tube will help give Phoebe the energy she needs to heal. 

We are now on step down in the ICU so Phoebe has moved another step in the right direction. She is still having fevers although they are not as frequent, and she is being monitored closely. 

One step at a time. 

There she is. Amazing and strong Phoebe Rose. 

1 comment:

  1. Oh, sweet Phoebe, I'm holding you in my heart & prayers & believing in your cure, and living the life you so deserve, cancer free. Stay strong, beautiful girl & know that all of us are cheering for you. Love & Hugs from the Henrys <3