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, November 4, 2011

Home away from home

Home again, at our Memphis home way from home. I can't say it enough, just how wonderful it is to have each member of our family under the same roof.  This time we have is precious and the tenuous nature of our situation is never far from my mind.  We take things one day at a time and hope that Phoebe remains well and without a fever so that she stay an out patient - with us at home.

As I write this, Phoebe is sleeping peacefully at the hospital - getting more platelets and an injection of IL2.  The results of the NK chimerism test, the test that looks at how many NK cells are active in Phoebe's blood and how many are mine versus hers, shows that 99-100% are donor cells. This is great news. Phoebe will continue to receive IL2 injections for as long as their are NK soldiers to feed.  The hope is that the NK cells will work to rid Phoebe's body of the lingering and stubborn Leukemia cells before we start the transplant process. We will find out results of the next chimerism test this week.  Phoebe will have a bone marrow aspiration done this week too, on Wednesday.  Everything is steadily moving forward and it feels good.

Although we have been here for almost a month, each time I walk through the hospital doors, talk with Phoebe's doctor, or meet another family, I am reminded of just how lucky we are.  We are here and we have this second chance.   The time that we have together right now is wonderful in its simplicity. Walking to the coffee shop with Phoebe in the stroller, the fresh air, sharing a meal together, watching a movie - these small and simple things are precious.  Their importance is so very clear.   I look forward to the day when spending a week with both of my children and my husband under the same roof is not a rare event.  I know that to get there will take some time, but it will be well worth the wait.

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