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, May 20, 2011

One week down ...

Over the past few days, although Phoebe's temperature has been up and down, it has always been easily maintained with tylenol.  Last night it jumped up to 40.5 and after that it was so high that it wouldn't register on the thermometer.  Her heart rate, in response to her fever and pain, also jumped up and in the wee hours of the morning it climbed to as high as 230 beats per minute.  At rest on a good day, Phoebe's heart rate is usually around 120 beats per minute.

There are really no words to describe the fear, desperation and sadness that I felt this morning at 4 am, as I sat watching Phoebe.  She was medicated with tylenol, completely surrounded by bags of ice, with a cold cloth on her forehead but still running a temperature too high for the thermometer to register.  As I sat next to her crib, holding her hand and rubbing her swollen belly I began to tell her a story.  I told her about all of the dreams that I have for her.  Dreams of picnics in the sunshine, of running and playing with Mae, learning how to swim, of making friends and falling in love.  About plans to return to Toronto to explore the city when she is healthy, and to shop for prom dresses when she is big.  I told her about all of the wonderful things that are waiting for her, in the hopes that I could calm her down enough to lower her heart rate.  That I could talk some sense into her little body.  Many people have said that I have always been a good talker, so I thought it was worth a try.

In the end it was a combination of morphine and tylenol that eventually calmed her down and as I write this her heart rate is at a more manageable 165 beats per minute and her temperature is 37.7.  She has some pain, her belly is still distended, and her mucositis appears to be getting worse, but her vital signs are good.  The doctors are adjusting the amount of her morphine infusion and because her fever has been reoccuring for the past 5 days, they are running some more tests and she is being started on another antibiotic.   The hope is to find the source of the fevers and also that the new antibiotic will work better at fighting whatever may be brewing in Phoebe's body. 

Earlier this morning when things seemed impossible, when it seemed as if Phoebe's heart rate and fever would never come down, I thought again about all that Phoebe has done just to be here, about her incredible fight, and it became clear to me that anything is possible.  We are at day +7,  the sun is finally shining here in Toronto, we are an entire week post transplant, getting closer to engraftment with each day, and Phoebe has proven her incredible strength and resilience once again. 

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