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, April 17, 2012
Milk and Bananas
In other Phoebe news, she is now standing alone for longer periods of time but as soon as I point this out - saying to her "look Phoebe, you are standing!", she gently lowers herself back down to the ground and laughs, as if to say - I will walk and stand on my own terms, thank you. She is a feisty one, our Phoebe. Yesterday during her physical therapy appointment she finally allowed the therapist to play with her, but as soon as she did something Phoebe did not approve of, her hands were pushed away, and she was met with intense shouts of "no!" and "ma!" - the latter being Phoebe's way of saying mine.
Yesterday's check up showed near perfect blood work, including liver enzymes which are finally, for the first time in over a month, under 100. Still not normal, but close, and very far away from the critical level of 1800 they were previously. The levels of her medications are still being monitored closely and adjusted until we reach the right dose. Her immuno suppression at yesterday's check was in the normal range, but her anti fungal drug was a bit too high. We will be back again this week and next to monitor the levels and then perhaps we will discuss a possible home coming. Hopefully.
Mae is starting to talk about returning to Ottawa more and more as each day passes. On the weekend she came to tell me with great excitement in her voice that "Phoebe's rash is gone away, we can go back to Ottawa now!" I am so very excited for the day that we can board a plane to go home, when Mae is able to get back to her house and her toys and all of the baby dolls that went home with her daddy. She calls her daddy regularly to check to make sure that he has properly put all of the babies to bed. We are looking forward to when we can be together again and to adding a bit more normal and fewer doctors visits to our daily and weekly routine.