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.

Friday, November 14, 2014

More Home

Three days at "home" and all is well. We are holding Phoebe and Mae tight and just happy to be under the same roof. 

Yesterday, Phoebe had an MRI of her brain and after looking at the images, the neurologist commented that we seem to finally be turning a corner. The lesions or spots on Phoebe's brain are smaller, but the inflammation is still very much there. We are going to repeat the MRI next week and the hope is to see more signs that things are improving, resolving, and healing. The EEG that was done earlier this week is also much improved.  

There was a tentative plan to give Phoebe another granulocyte transfusion yesterday but between the inflammation in the brain and Phoebe's own cells holding their own, although low, the decision was made to wait and see and hope that Phoebe's own cells continue to be enough. 

In other news, Phoebe is eating more and we have started to wean her from the feeding tube - she loves food and hates the tube, so I don't think this will take very long. She is happier. She is awake more during the day; she sleeps well at night. Her voice is still raspy and she is very hard to hear, but she tries so hard. Mae understands Phoebe well and has started to act as her interpreter - she happily leans in to listen to Phoebe's whisper and passes on what she hears. Phoebe smiles at this and it settles my weary heart to see them together. Mae has seen and heard many things that no big sister should ever see or hear, and she needs this closeness with her sister. 

The goal for this weekend is to be at home when not at St.Jude, to sleep in our own beds, and to encourage Phoebe to walk. She hasn't walked a single step in over two months, but like everything else, I am sure she will surprise us with her determination and strength. Amazing Phoebe Rose.

1 comment: