Fevers

We are in patient at St.Jude and have been here since late Saturday night. Phoebe has been having very high and persistent fevers. She had one positive blood culture, but all have since been negative. She is still requiring oxygen and at times her breathing is very labored. Although there are many possibilities, it is not clear exactly what is causing these fevers. Phoebe is struggling with many things and this is so hard. 

Writing down everything that is going wrong lately is incredibly difficult and it takes me places that I just don't want to go. 

Phoebe has blasts in her peripheral blood. Yesterday there was 1% and today it is 9. They are thought to be leukemia. 

Receiving blood products is becoming increasingly more complicated and Phoebe seems to react to everything with fevers, chills, and panic. Considering that leukemia crowds out normal and healthy cells, we rely on blood donors and Phoebe needs to be able to receive blood and platelet transfusions to live. 

When Phoebe's platelets drop below 75,000, which in the world of leukemia is actually not that low, she develops nose bleeds that just won't stop. Imagine your child's nose bleeding and not being able to stop it. Pillows, sheets, tissues, soaked with blood. Wise beyond her years, Phoebe will demand platelets, she will ask for decongestant nasal spray, she will lay tissues on her pillow because the sight of blood staining it and her sheets scares her, and at 5 years old, she knows too much. 

As the days with fevers and everything continue, our hope is wavering. Our hope for a cure has shifted to hope for time, relief, peace and healing. Sometimes it seems as if we are on an island - alone in our belief and hope for healing. We are hanging on with all that we have and really just trying to get back to solid ground. To be able to go for a walk outside with Phoebe, without the worry of oxygen, fevers and nose bleeds, is something we long for. 

Count your blessings, friends, and enjoy your kids and loved ones and the many, many gifts they bring. 

We are so grateful for the support, messages, love and prayers sent our way. I often imagine all of this love wrapped around Phoebe, protecting her from the scary things that tend to fill her days. 

This Sunday November 15th in Ottawa, our friend and very talented photographer, Anne-Marie Bouchard, is holding 'Photos for Phoebe' - this is the third year this event has happened and we are so thankful. It is a wonderful opportunity to get beautiful photos of your kids, yourself, friends, or loved ones in time for the holidays. For more information, please email Anne-Marie at anne@ambphoto.com or visit http://ambphoto.com/blog/2015/11/09/photos-for-phoebe-year-3/