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.

Friday, February 24, 2012

Day + 85 and another hurdle ...

Day + 85 and all is well, or somewhat well. Phoebe's weekly chimerism shows 100% donor cells - great news. This week however, Phoebe developed a bit of a rash. It started on Tuesday evening, on her fingers, slowly spread to her face and today it is also on her feet and back. Never a dull moment around here. The doctors are assuming that it is GVHD ( graft versus host disease) and have ordered a topical and very strong steroid ointment. GVHD occurs when the graft (my stem cells) recognizes the host (Phoebe) as foreign and mounts an attack.

We are hoping to see improvement by Monday. There was some talk about what to do if there is no improvement, but I am hoping we won't have to go that route, as it involves oral steroids, and restarting immuno-suppression. These things will both suppress Phoebe's new and developing immune system and that worries me very much because of the larger beast that we are fighting. We are really hoping to avoid that route but GVHD can be both debilitating and life threatening so we will do whatever it takes. Our doctor did say that this rash is mild GVHD, that it is positive that it has moved slowly and that it took many weeks of being off immuno suppression to develop. He also said that a bit of GVHD is not necessarily a bad thing as it means that Phoebe's new/my immune system is fired up and possibly fighting off any leftover Leukemia cells. We are focusing on that And hoping the ointment successfully clears Phoebe's skin of the rash.

Phoebe will be seen by her doctors again on Monday and until then we will keep applying cream and hoping for the best. We will also be enjoying a weekend away from the hospital and the beautiful and sunny Memphis weather. And Phoebe and Mae, who have been playing up a storm lately and really loving their time together.

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