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.

Wednesday, December 3, 2014

Slow and steady

The biopsy and "surgery" of Phoebe's sinuses was thankfully very uneventful. The ENT doctor said that it was mainly putting Phoebe to sleep with anesthesia and waking her up again as they didn't find anything that resembled mold in her sinuses and nothing that needed to be removed. All looks good.

They did do a tissue biopsy and it was sent to the lab, but it unfortunately wasn't enough tissue and so they weren't able to run any tests. The pathology results of the mold that was discovered in Phoebe's sneeze are back however, and we hope that this will be enough and another biopsy won't be necessary. 

The results from the sneeze have narrowed down the very specific type of mold responsible for these infections and it is susceptible to the oral antifungal medicine that Phoebe has been receiving. This means that we can say good bye to the second and frankly, awful, IV antifungal. Any kind of fungal
infection is scary, and after a brief look on google today, I learned that some are more terrifying and threatening than others, but I am choosing to focus on the fact that in Phoebe's doctor's words "she is healing beautifully". She really is. 

We are moving forward. Phoebe is improving everyday and it is simply amazing to see how far she has come. She has started to walk again, and although her legs are very shaky and weak, she doesn't let many things hold her back. I am in constant awe of her strength. Today we had a visit from physical therapy and Phoebe happily kicked at soccer balls, bent down to pick things up, walked, and even tried jumping. This therapist was met with smiles and a willingness to play which also warms my heart. For quite some time, Phoebe has screamed and cried her way through hospital visits. There are still quite a lot of screams and cries, but she is coming around. 

We are back at the hospital tomorrow for another bone marrow aspirate and biopsy and an MRI of Phoebe's brain. If Phoebe's behavior is any indication, we expect improvements. She is doing many things that were normal before this long hospital stay, but that we missed while she was very sick. Beautiful things like singing along to the radio, laughing, playing and interacting with Mae, coloring and writing her name, dancing, walking and eating. We have far to go and most of these things are done with shaky and weak little legs and arms, but we are so grateful for these steps forward. There were days in the ICU when we worried that we would never hear Phoebe speak or laugh again. There were times when she slept the day away and we wondered if she would ever recover. Recently we worried that Phoebe wouldn't walk again. There are no words to express our relief, our immense gratitude to Phoebe's incredible medical team, and our pure happiness at this progress. 

This Saturday, I will be running in the St.Jude half marathon (or attempting to do this). I am nervous because of the lack of training I have done, but also excited. Excited to participate in a run for St.Jude. We are so thankful for this wonderful place. 

Please keep Phoebe in your thoughts and prayers tomorrow. 

We believe. 

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