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.

Thursday, December 15, 2011

Go Phoebe Go

Phoebe's first night in the ICU was intense.  It is a different atmosphere, and our room is near the exit so yesterday while I sat watching Phoebe's rapid heart and respiration rates, I also watched many very sad parents walk by.  It is a hard place to be, and I had a difficult time fighting back the tears as I packed up all of Phoebe's things to prepare for the move.  Because Phoebe has overcome so many obstacles, I worry with each hurdle that this is all too much for her, that this obstacle will be the one that she won't be able to overcome. 

Thankfully, our time in the ICU was not as unpleasant and frightening as I was expecting.  Soon after we arrived, Phoebe was started on a steady and regular flow of oxygen to help her breathing, and the nurse quickly got to work at managing her pain.  After about 3 hours of watching her struggle just to breathe, things slowly got better.  The oxygen helped her to relax and the pain medications helped her to sleep.  The steroids worked at bringing down the swelling and inflamation that appeared to be running rampant throughout Phoebe's entire body.  Before long, she was resting comfortably and apart from a 5am xray and vitals every 2 hours, she had a fairly peaceful night.  Not at all like the night that I was imagining in my head before we arrived in the ICU, but as we learned later, it could have easily gone that other and very frightening way. 

It is amazing how quickly things can change direction.  Just as they can deteriorate quickly, they can also improve just as fast.  Today, the possibilities for good are seemingly and wonderfully endless.  The doctors came in to check on Phoebe at the end of the day and commented on how happy they are with how she looks, and on how quickly she turned things around.  Phoebe's kidneys and liver have endured a lot of abuse throughout treatment and they and her swollen belly are still being monitored closely.  The doctors feel that everything is under control and they expect Phoebe to continue to improve.

Because the past few days have been so wrought with complications, the big  problem and reason for this transplant, Phoebe's Leukemia, has been pushed to the back of our minds. We were concerned because Phoebe needed to have steroids today and yesterday, and we were told that steroids can suppress the immune system. The doctors explained that because Phoebe received so many cells, she needed the steroids to help to lighten the load and reduce the stress on her body.  They also discussed the weekly chimerism tests that they have started to do to look at the make up of Phoebe's blood cells as a way to monitor and ensure transplant success.  Before bringing up the results on the computer, they cautioned Jon, saying that the first chimerism is sometimes mixed because it is so soon after engraftment (in Phoebe's case she could have a mix of her own cells, the first donor's cells, and my cells). And then there it was for Jon and the doctors to see together for the first time - 99-100% donor cells.  Donor #2 cells.  My cells.  Phoebe's is engrafted and she has a full chimerism.  Amazing.  Surprising.  Wonderful, Phoebe Rose.

This is incredible news and a wonderful sign that Phoebe is on her way to living life cancer free.  After the week we have had, it is almost hard to believe, but we believe it.  Oh, we believe.  Phoebe does still have a long way to go to complete recovery and to be considered "cured".  The goal now is to successfully guide the graft, the new cells, and to see continued 100% results on chimerism tests.  To safely bring Phoebe through all of this. 

We have now officially turned the corner.  If all continues to go well, Phoebe is scheduled to return to the BMT ward tomorrow.  Next stop - Memphis home away from home.    

Go Phoebe Go....

1 comment:

  1. you are so amazing for your daughter and you fight with her but more importantly you believe that she will be cured soon.
    go phoebe go!!!