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, March 2, 2011

One minute at a time ...

When Phoebe was diagnosed almost everyone that we spoke to said to take things one hour at a time, and if that proved to be too difficult, one minute at a time.  I remember thinking that I wanted to look as far ahead as possible because Phoebe's future is so bright.  I still believe that, but now I understand why we were told to take things slowly.  This road is long and full of curves and bumps and often as each hour passes, the situation changes and another obstacle has been discovered or overcome.
We have had a difficult week.  Phoebe has had terrible mouth sores and mucositis as a result of the high dose chemo and just when they appeared to be clearing up and when we felt like we could exhale and relax, we noticed that Phoebe's stomach was swollen.  The doctors ordered an x-ray and the results showed an infection in her gut. Now she is on five different types of antibiotics, IV nutrition and her stomach will be measured every 4 hours to monitor her progress. She can't have anything in her stomach until the infection clears up.
She is resting and working very hard to get better, but she hasn't been herself in a few days. It is so hard to go without seeing her smile and hearing her babble, but as each minute passes by, the antibiotics work their way in to Phoebe's system to fight the infection and Phoebe gets stronger.  Tomorrow is a new day. 

1 comment:

  1. Thank you Jenny. Phoebe and you and Jon and Mae have taught me so much about the power of love, family and strength and how important it is to think about the positive and recognize the good - even if it isn't what you would think of as great. You are all incredible. A true inspiration.