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.

Tuesday, December 13, 2011

The final stretch ...

Apparently Phoebe didn't get the slow and steady memo.  Yesterday we saw a slight rise in her counts - her white cell count was .2 and her ANC 100.  This came with constant and very high fevers, that barely responded to Tylenol, and a red rash that covered her entire body.  It seemed like a huge reaction for so few cells, until we saw her counts this morning.  Today her ANC is 1100 and her white count is 1.4.  A huge and very fast jump which better explains the reaction. 

While it is wonderful that she is engrafting, such a fast jump is not ideal.  Phoebe's body is in complete shock and responding with fevers and rash.  We have been told that things could get worse, that we could end up in the ICU, but we are taking things one day at a time.  Overnight, her fevers seemed less frequent and slightly lower, and apart from being exhausted, she is doing well.  Or as well as can be expected.  She is not herself; she is weary and uncomfortable, but we are in the final stretch.  The sprint to the finish line, as Phoebe's doctor said yesterday. 

The treatment for this, engraftment syndrome, is steroids, but because they suppress the newly developing immune system, they will only be given if Phoebe's condition worsens. If it doesn't, then we will simply wait it out.  Wait for her body to adjust to the cells and to calm down.  The doctors are keeping a very close eye on Phoebe, and we know that they are doing everything possible to bring her safely through this. 

While there are many unknowns, a few things are certain.  Phoebe is incredibly strong, and although her strength and her spirit are constantly tested, she seems to refuse to back down.  No one should have to prove strength, but Phoebe has proven again and again that she is stronger than any cowardly Leukemia cell.  She is exactly where she needs to be to get better, and this transplant is clearly very different from her first.  If the heat from her body is any indication, her immune system is extremely fired up and that is what will hopefully make the difference and make this our final sprint to the finish line


  1. God bless and we're thinking of you and praying every single day (a few times!)...

  2. Hi, it is the first time that I write (sorry for my bad english, I speak french...)I fallow your story and think about you and your wonderful family. My son had leukemia and he is doing very well now. I wish you the same for your beautiful daughter. take care.