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.

Saturday, September 24, 2011

Phoebe's on the move

Putting one foot in front of the other, and moving in the right direction.  Phoebe's fevers have been less frequent and  low on the fever scale, but they are still hanging around.  The doctors are altering her antibiotics slightly just to make sure that she is well covered.  Phoebe looks very well, which is encouraging, but to Jon and I, not a big surprise.  Phoebe always looks good.

She is now about halfway through her month long re-induction treatment plan.  Throughout this time, we have been talking with our transplant doctor about next steps and he has suggested the possibility of going to St. Jude's for a second transplant. The thinking among our doctors seems to be that for a second transplant to give Phoebe the greatest chance at a cure, it has to be different in many ways from her first transplant.  They are hesistant to do the same type of transplant a second time and this is where St. Jude's comes in.  They seem to have many innovative and novel approaches to transplant for high risk patients like Phoebe, that have also proven to be effective.  Our road has been very bumpy and long, so to be able to go to St. Jude's at this point in the journey - it would feel a lot like winning the lottery.  The cancer treatment lottery.  When to further treat and try to cure Phoebe's cancer has come up against so much opposition, what better place to go than the hospital named after the patron Saint of hopeless causes?  We are far from hopeless, but to me, at this moment, they represent what Phoebe also is: a bright and shining light in a sea of darkness.  We still have many unanswered questions, and are not sure even if it is a real possibility, but together with our doctors at Sick Kids, we are taking as many steps possible to make it happen. 

In other Phoebe news, today I watched her do something that very closely resembled crawling.  With a look of obvious excitement and pride, she "crawled" across her mat. Phoebe is on the move, and in typical Phoebe fashion, she is doing it in her own special way.  Tomorrow she will start another 5 day course of steroids and as Jon commented today, by the time that is done she will surely be a match for Ben Johnson in the 100 metre sprint.  Oh, sometimes, you just have to laugh. 

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