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, June 17, 2011
Good news, lots of it.
We have good news. Lots of it. Phoebe's lumbar puncture went well. She was awake and smiling soon after. A sample of her spinal fluid was removed and tested, and the results show that it is clear of any blast cells. Wonderful news because the central nervous system is one of the areas of concern for relapse. Phoebe will have 5 more lumbar punctures, about once a month for the next 5 months. She will be completely finished by Christmas. On to more good news ... a test was done recently to determine the percentage of donor cells that are active and working hard in Phoebe's body. This is a very important test because it is a measure of how successful the transplant process is, and also of how much if any of Phoebe's cells are left over. Because Phoebe's bone marrow was once found to be full of leukemia, the hope is for few to none of her own cells to be remaining. More than 95% of Phoebe's cells were found to be from her wonderful donor.
A few more big steps towards recovery.
Phoebe is doing well. We are still waiting for her to make platelets, and for her other blood counts to stabilize, but she is working hard. Today may be the first day since transplant that she won't need a platelet transfusion. It is after 6 pm and her platelets are holding strong at 63. They like to keep them above 50. Her liver is still slightly enlarged, but an ultrasound of it today showed nothing to be concerned about. An enlarged but well functioning liver. She is tolerating all of her tube feeds, and has taken a few spoonfuls of food by mouth. Yesterday she tried hummus and loved it. And her baby mum mums, she loves her baby mums.
She is smiling and making friends and today we took a trip upstairs to an outdoor patio for some warm and fresh Toronto air. Phoebe loved that too. We are still very much looking forward to going home, but as our doctor told us today; we are taking things one day at a time. We are still very early in the transplant process and are aware that although home is within our reach, we want to make sure that Phoebe will be going there to stay.