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, October 5, 2014

We are still in the hospital. Phoebe has a bacterial infection in her blood that is resistant to one of the main antibiotics used for treatment. They are treating it with another drug and so far, her blood cultures have been negative for 24 hours.  

Despite these negative blood cultures, she is still having very high fevers and so tomorrow she will also have a full body CT scan to look for a possible fungal infection. They have started treatment for a fungal infection just in case as the high fevers on antibiotics suggest that this may be another problem. 

She also has a sore in her mouth, around one of her crowns, that could be an abscess although without any immune system to mount a response, it is hard to tell. It could also be a virus. It doesn't appear to be fungus so that is good. Tomorrow the dentist is also going to have a look. 

She is tired and sleeping most of the day. She isn't eating or drinking. She is depressed and sad and angry and I hurt for her. My heart aches and I just want to see some signs that she is getting better. 

How does this happen? How did we get here? 

Phoebe has been neutropenic for months. She has no immune system. She has nothing to fight viruses, bacteria and fungus and this is terrifying. This is what cancer and the treatment for cancer does.

The reason we are here, the relapsed leukemia, is always in the background. It never leaves our minds, but right now, these fevers and other issues are at the forefront. Phoebe will not receive the last four days of treatment for her relapse until she heals. She needs to heal. 

We have dodged a million bullets up until this point and we can only hope and believe that we will continue to do so.
We believe that Phoebe will be okay. We have to. Right now that is all we can do to keep from completely breaking down. We are taking it one day at a time. 

Phoebe will go in for her CT scan tomorrow morning. Please pray that there is no fungus. Please visualize clean and clear scans. Please send Phoebe strength and hope and love. 

Jon and I are alternating shifts at the hospital and last night as Mae and I were leaving, the stars were out and bright and she looked up and said she wanted to make a wish. She told me that she wishes we were home and that her and Phoebe were in the backyard swinging. "You know, I am the one that taught Phoebe how to pump her legs". 

Today, I am visualizing a healthy and happy Phoebe, swinging so high that I am yelling at her to stop pumping her legs - she is laughing at me and her hair in blowing wild in the wind. Mae is beside her and life is as it should be. 

I can see her. 

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