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, September 18, 2015

Getting there ...

All things considered, Phoebe is doing well. We are still at the hospital everyday and many days are very long - some stretch into the wee hours of the morning and have us returning home when other people are getting up, but when we are home, Phoebe is up and joyful. She loves playing 'just dance', she is learning to ride a bike with training wheels, and she has started to ask her Daddy to make "his special restaurant food" - her old favourites which is a great sign that her appetite and love for food is back. Phoebe has always been a "foodie". 

Yesterday was the bone marrow aspiration and while Phoebe was sedated, her central line was replaced to hopefully avoid another infection. I have honestly lost count of how many of these central lines Phoebe has had, but I think this is number 13. We are still waiting for the chimerism results, but so far, the bone marrow looks better. Before the gemtuzomab, Phoebe had 91% disease in her bone marrow and it was a mix of ALL and AML. Today, her MRD (minimal residual disease) is 8% and it appears to only be AML. This is interesting and encouraging as the gemtuzomab is only targeting the myeloid leukemia (AML), and the concern among all of Phoebe's doctors was that it would get rid of this population of leukemia and cause the other, the ALL, to take over. This is not what is happening and so we are continuing with this treatment and Phoebe will receive 2 additional doses over 4 weeks. This result is really the effect of one single dose and we are relieved. Finally, something is working. 

Thank-you all for keeping Phoebe in your thoughts and prayers. This road is long, so much more so than I could have ever imagined. We are so grateful for the love and support we continue to receive. We are weary but hopeful. Always hopeful. And thankful for each day. 

Go Phoebe go ... 

1 comment:

  1. Go Phoebe Go is right. She is amazing and so is her family. Continue to hope!!!

    Prayers that things keep going in the right direction.