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.

Monday, September 8, 2014

We will know more tomorrow ...

Over the past two weeks, Phoebe's blood counts have been slowly dropping. Not consistently, some days they are up and some days they are down, but they have been down more than up and it is definitely a cause for concern, and worry, and stress. Today we arrived at the hospital certain we would see some recovery - Phoebe spent the weekend running and playing. We noticed that she started to carry her backpack on her back again, instead of dragging it behind her as she has been lately. She wanted to swing at the park - we took this as a sign that she wasn't feeling dizzy due to low hemoglobin. We watched her run fast after Mae, her backpack on, her little legs looking like they might let her take off in flight. We listened to her sweet laugh and we soaked it all in, certain that we would see a rise in her blood work. 

This morning, Phoebe's hemoglobin and platelets were at an all time low. She received a platelet transfusion and will most likely get blood tomorrow. Phoebe hasn't needed a blood or platelet transfusion in over two years. These results are very difficult to take. 

Phoebe also had a long awaited bone marrow aspiration today. We have now been on this study drug for one full 28 day cycle. When we began the study, Phoebe had about 60% disease in her bone marrow. We don't have enough results to have a definite answer, but when the doctors were able to "glimpse" Phoebe's bone marrow under the microscope at the end of the day, they saw blasts. Blasts can mean leukemia but in a perfect world they can also mean recovering cells. Today, they saw about 60% blasts in Phoebe's bone marrow. I am hopeful and I am an optimist, but the chance that all of those are recovering cells, I would think, is extremely unlikely. Not impossible, but unlikely. 

We will know more tomorrow. 

Right now we know very little. We know that despite what Phoebe looks like on paper, she is still feisty and full of energy and spunk. We know that Phoebe has been on this experimental drug for a month and that while this drug may not have moved us further ahead in our search for a cure, it has not moved us any farther behind. It has given us time and without it I am certain that we would be seeing much more than 60% blasts. If we do in fact have 60% leukemic blasts, well, we have no more than what we started with and the time we have spent in Denver although it has been incredibly stressful, has also brought us joy and beauty and peace. 

We have climbed to the top of mountains to see views that have literally taken our breath away, we have walked through red rocks to see ancient fossils of dinosaur footprints, we have gone for long walks in search of bunnies and new parks, we have seen things we would never have seen at home and we have made the most of our time here. 

We will know more tomorrow.

Thank-you, to all of you, for continuing on this journey with us, please keep our sweet and feisty Phoebe in your prayers. 

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