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, April 29, 2015

Phoebe received her granulocytes last night and early this morning. Before the granulocytes, she was not herself, but she was up and doing crafts. As the cells were given through her PICC line, she became irritated, restless and started to cry out in pain. Her heart rate started to climb and after a day without needing the blow by oxygen, we turned it on just to be safe. It was a long and restless night, but Phoebe eventually settled a few hours after the cells finished infusing. 

This morning she received the second bag of cells (I donated once but because there was a lot of volume, they were able to split them into two units). She is still very restless, anxious, and not herself. She is trying to sleep but just can't seem to get comfortable. Her ANC after the first bag of cells was 1300 - this is a big and sudden jump from zero and is all my cells as Phoebe is still not making her own - it is higher now after the second unit. These cells are causing a storm inside Phoebe's little body as they search out the infections that fill her blood and cover her skin and this is causing inflammation, a high heart rate, more rash, pain and rapid breathing. Despite all of this, I am visualizing these cells doing what they are supposed to do and going to work on the fungus and any infections that Phoebe has. Bringing light and healing to this very dark place. I hope that we start to see some of this healing soon.

This is so hard. 

Yesterday, we had more impossible conversations with doctors and in these conversations we went to places that I hoped to never go. We were walked through impossible scenarios and asked to think about things that no parent should have to think about. This is our reality and it is terrifying. While the doctors spoke, I just kept thinking - this can't be happening. How did we get here? This fungal infection combined with Phoebe's refractory leukemia make this situation very serious, and we left the meeting sad, overwhelmed and broken. We are clinging to hope and to the very small chance that Phoebe has to be well. After all, she has overcome impossible circumstances and odds before. Anything is possible. 

The plan is to support Phoebe through the struggles caused by the granulocytes and to give more cells on Friday if she has fully recovered from the ones that were given today. 

We will keep taking things one day at a time and putting one foot in front of the other. 

Please keep Phoebe in your prayers. Hug your kids and the people you love. Hug them tight and tell them every single chance you get that they are loved. 





2 comments:

  1. Praying for all of you. Hope those cells do what they need to do for sweet Phoebe.

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  2. We are reading every post with love and prayers sent your way. Many of our friends are reading posts and thinking of you all. She will over come!!!

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