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.

Sunday, November 1, 2015

There was a miscommunication about the CT results - it seems that although some things look better, there are new areas of concern in the lungs that explain Phoebe's need for oxygen. Phoebe is now requiring oxygen 24 hours a day, so we have a machine at home and portable tanks in the car. We tried to do some trick or treating last night, mostly for Mae as Phoebe is not a fan of Hallowe'en - she will tell you that "candy is bad for you", if you ask her what she thinks, but her breathing was just too labored and it was too difficult to make our way with the tanks that we gave up and went home after a few houses. It was sad and hard - remembering carefree Hallowe'en nights in the past, but we tried and Mae smiled, so it was worth it. 

We are still out patient, but only because St.Jude places a lot of faith and trust in parent's ability to care for their child and they know that the best place for Phoebe is at home with us. We are still at St.Jude daily, but when we are at home we are running IV antibiotics every eight hours, giving Phoebe her daily oral medications, switching out and setting up IV nutrition, monitoring oxygen saturation levels and making sure Phoebe is getting enough oxygen, doing dressing changes and the maintainance of Phoebe's central line, taking Phoebe's temperature, trying to get her to eat and drink which means frequent trips to the store to get anything her little heart desires, all while trying to prevent and control the nose bleeds that seem to be chronic right now, and homeschooling Mae. I am thankful there are two of us. It is absolutely exhausting and some nights we get very little sleep, but Phoebe is happiest at home, Mae is happiest when Phoebe is home, and we will do anything to make them smile, and so we do. 

In other news, although I donated granulocytes to Phoebe for I think the 30th time this week - a process that takes two and a half hours and is getting more exhausting as the weeks pass, Phoebe was not able to receive them. Each week her blood is checked to make sure that she will not reject the granulocytes and each week it has been fine. This week however, they discovered that Phoebe somehow developed antibodies to my granulocytes and if we were to give them they would cause her to be very sick as her body would reject them. The granulocytes were thrown out and we plan to test again on Wednesday because Phoebe is still neutropenic and she needs these cells to fight the many infections she has. I don't know where we go from here if she is unable to receive them. I also don't understand why she is suddenly rejecting them and it is very complicated. Phoebe's doctor explained two possibilities - one is that Phoebe picked up antibodies from an infusion of IVIG in which case it is temporary, but the other is that Phoebe's own cells have somehow managed to mature lymphocytes. The latter would be very rare and actually kind of crazy because after two transplants and all that Phoebe's body has been through it is very unlikely and almost impossible for any of her healthy cells to survive. 

We will know more next week and until then will continue to put one foot in front of the other, breathe in and out, hug our girls tight, laugh as often as possible, and hope with all we have for healing. 

Thank-you all for keeping Phoebe in your thoughts and prayers. 


  1. Prayers and hugs for all of you!

    Glad Super Hero Mae got to trick or treat and how smart is Phoebe about the candy!

  2. Praying for your brave family. Thanks for sharing your story. I wondered if you were aware of a new British experimental drug therapy being featured on CBC news today (it may not be applicable but could be worth reading) http://www.cbc.ca/news/health/leukemia-baby-designer-cells-1.3307170