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, May 11, 2011

The day before the big day.

Earlier today I watched our nurse, outfitted in a blue protective gown, gloves, giant eye shield and mask give Phoebe her last treatment of high dose chemotherapy. Phoebe was fast asleep while the chemo was administered and I sat close by, quietly reading, while it slowly ran through her veins.  It is such a strange thing to have gotten used to.  I remember the first treatment of chemo Phoebe received, I remember seeing all of the protective gear and wondering what this powerful drug would do to my baby's body. I later learned that these powerful drugs, despite how scary they are, would cure Phoebe of her disease.  Risk versus benefit is something that we have heard often throughout the past seven months. 

Tomorrow will be day - 1, and in Phoebe's protocol it is scheduled as a rest day.  Unfortunately because Phoebe's central line is still sluggish, instead of resting she will be heading to surgery to have her line replaced.  She will go under general anesthetic and the surgeons will remove the sluggish line and insert a new line.  All of this while Phoebe's blood counts are dropping and at a time when her blood is prone to clotting.  In other Phoebe news, she has developed another blood clot in her leg.  After weighing the risks versus benefits, the doctors have collectively decided that to replace her line is the best option.  Phoebe's central line is inserted into a vein in her neck and it comes out of her upper back.  It separates into two lumens and is where all of her drugs are given, and also where blood is taken for her countless blood tests.  It is a necessary component of treatment and it needs to be working well.  The worry is that a sluggish line would be more prone to infection and that it may not last through transplant.

So, getting ready for tomorrow we are foucsing on the benefits rather than the risks and finding comfort in the knowledge that Phoebe is exactly where she needs to be to continue on her path to recovery.   This is just another little bump in the road.

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