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, January 12, 2012


Phoebe made it back to the transplant unit, and has been steadily improving.  She is now getting 20mls per hour of formula with no problems other than the fact that she is very hungry.  We have been feeding her by mouth and she has shown a lot of interest in her cup, various snacks and whatever we have on the spoon.  All wonderful signs that she is feeling better. 

Plans are being made as I write this to send Phoebe home to the Target House today.  They have identified the specific type of bacteria and are adjusting the antibiotics once again to make sure that it is well treated.  She will be going home on at least 2 antibiotics in addition to her many other drugs.  It is a particularly stubborn bacteria so Phoebe may need to have her line pulled but right now all of her blood cultures have come back negative so there is no plan to do that and we are taking each day as it comes. 

Phoebe is doing very well.  Her last chimerism was 100% and the doctors have started the slow wean of her immuno-suppressant, Tacrolimus.  This usually takes about 4 weeks and doing it earlier than planned, we were told, will help with treatment of the Leukemia - in case there are any unwanted cells hanging around, having a well functioning immune system will help to fight them.  I was worried when they told us that they were starting the wean earlier, wondering if there was something that caused them to worry, but once again I was reassured that everything is going well.  Her immune system is steadily improving and she is almost to the point where she will no longer have to wear a mask when she visits the hospital.  She will still need to be somewhat isolated from the outside world, but we are moving forward and each day that passes is one more day in which we have triumphed over all things cancer. 

For now, we are hopeful that this will be our last hospital stay, the last time that we are separated by the fish bowl, and we are focusing on helping Phoebe to catch up on all that she has missed.  We are working with her physical and speech therapists to improve eating and gross motor development.  She is doing well and we are looking forward to all of the wonderful and "normal" things that are in store for her in the future. 

No comments:

Post a Comment