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, August 15, 2014

BackPacking in Denver

The sun has set on day three and all is well. More than that, all is quite good. Phoebe has now been hooked up to a continuous infusion of the study drug for three days. When we heard that this drug was a 24 hour continuous infusion over 28 days we wondered how this could possibly work. Phoebe is a busy and very active four year old. She is also very feisty and stubborn. When she gets going she doesn't stop. I imagined running along side her desperate to keep up while carrying her bag of medicine, I imagined Phoebe refusing to cooperate with any of this, and I am happily and pleasantly surprised. 

Phoebe wakes up each day, jumps out of bed and the first thing she does is put on her back pack. The very first thing. It is really quite something. She wears this backpack for most of the day. She doesn't complain, she just goes about her day. 

There are many things that Mae and Phoebe do that I am proud of, but watching Mae run to help Phoebe put on her back pack, seeing her carry it when Phoebe is tired, and about Phoebe's constant and happy backpack wearing - I am very proud. Not a typical thing to be proud of, but we are beaming with pride nonetheless. 

As far as the clincial trial goes, it is too soon to tell how things are going, but when Phoebe had her blood work done yesterday, there were improvements and signs that her bone marrow is still making healthy cells. Things are moving in the right direction and it is encouraging. We probably and hopefully won't have another bone marrow test until the end of this 28 day cycle. If all continues to look well there is no reason for this test and we can give Phoebe's little back a break and a chance to heal. 

In the meantime, all of the signs point to a healthy Phoebe. She is fierce and fast and full of joy. She keeps us and her doctors on our toes. The drug so far has been gentle and unlike most other treatments she has received. We are happy and relieved. 

In other news, we have lasted about as long as we can in a single room with a microwave and a mini fridge. We miss cooking and space and the stress of living in a room with a family of four while we are also dealing with stress of clinical trials in a new city was getting to be too much, so we found an apartment close to the hospital and are excited to move soon. Quality of life is really important to us and when many other things are falling apart and causing stress, coming home to a quiet space where we can make a healthy meal, is about as good as it gets. 

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