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.

Sunday, August 10, 2014

A week without doctors ...

We are still here in Denver. After seeing that Phoebe had just 3% disease, the doctors decided to recheck her bone marrow in a week. Considering that the bone marrow results were low and that Phoebe's blood work looks good, this gave us an entire week off of hospital life. 

We did some exploring and pretending that we are in Denver on vacation and not for a clinical trial. We saw more of the mountains. We drove as high as any road in North America will take you, up to the top of Mount Evans. We got out to do a bit of hiking and exploring around Summit Lake. It was freezing (for August) - a brisk 12 degrees Celsius at the top so we didn't stay very long, but the views were breathtaking. Thankfully Jon was driving or we would still be up there in the mountains, frozen with fear at the side of the road. Those roads are narrow and scary! We saw a wild animal sanctuary, road on carousels and trains, and even found fossils of dinosaur footprints. We did some more hiking, explored some more, and just had good qualify family fun. 

Phoebe celebrated her fourth birthday with a trip to the zoo, a sushi dinner, and a surprise "frozen" cake that was a gift from a very kind and thoughtful nurse from CHEO. Kindness abounds. This cake made Phoebe's day and seeing her light up with happiness, made our day too. 

Every so often though, the real reason we are here sneaks in. It is easy to forget why we are here as most of time we look at Phoebe she is running, jumping and playing. She doesn't nap, she isn't tired, and she has absolutely no symptoms of this disease. It is quite something how she manages to live with cancer. We go about our life and no one suspects that this little girl that runs along beside us often giggling with her big sister, has cancer. 

We are rechecking the bone marrow tomorrow. If Phoebe has enough disease for the study - 10% under the microscope, we will stay in Denver for at least a month so that we can give Phoebe one cycle of the study drug. If Phoebe doesn't have enough disease, I don't know what we will do. Probably go home and wait some more. We don't really have a plan. 

It is hard to know what to hope for. Although we need more disease for this study, I refuse to hope and pray that Phoebe get sicker. It just doesn't seem right. Instead I pray and I hope that these next results lead us to the path that we are meant to take. We are thankful that we have options and we are thankful that Phoebe continues to stump her doctors. I write this because although I wish that we had answers I also realize that the answers that are out there are not what we want to hear. Despite how hopeful our doctors may be, I know that they expect Phoebe to get sicker and sicker because statistically, they know that after this many relapses of this disease, there are few to no survivors. Phoebe is proving them wrong and I hope and pray that she always will. I know that they hope for the same thing too. 

Tomorrow Phoebe goes in at 10am for her procedures. This will be her twelfth bone marrow aspirate in just over two months. She has many tiny little holes in her back. I find myself staring at these litle holes that are trying hard to be scars and visualizing a healthy and grown up Phoebe telling stories of how she once was known to stump and mystify doctors. Telling stories of how she survived. 

There she is. I can see her. 

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