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.

Tuesday, July 22, 2014

She believed she could ...

Our time in Denver is coming to an end. We have enjoyed our stay here although it has been busy and filled with the usual bumps. We saw things that we don't see at home, we took in the breathtaking beauty of the mountains, and Phoebe climbed some mountains of her very own. 

We have been living an uncertain, and what can only be described as a roller coaster kind of life for the past three years. This roller coaster is full of ups and downs and twists and turns, it is fear inducing but there is also joy. Phoebe brings the joy. She laughs through the bumps. She smiles and laughs and runs and jumps through pneumonia and leukemia and at times, it is just unbelievable. That she can be so "well" yet also so sick. 

We repeated the bone marrow tests yesterday and the preliminary results are in. Under a microscope, no leukemia cells were found. This means, that technically, Phoebe is in remission. It also means that right now we don't qualify for the study. We know, because we have been on this road before, that just  because no leukemia cells were found under a microscope, doesn't mean that no leukemia exists at a lower level. Given how aggressive Phoebe's disease is and that these cells were there just last week, we know that there is likely something lurking but we need a lot of disease to qualify for this study, so we are a bit stuck. Again. 

Today has been a flurry of activity and our emotions are all over the place. We can't believe after how hard we fought to get here that Phoebe may not get this treatment - or that she won't get the treatment here. As much as fewer leukemia cells makes us happy - we know that standard treatment will not help Phoebe and that is all we are left with right now. That and waiting for disease and another relapse so we might qualify for a clinical trial. Imagine knowing your child has an aggressive disease and not being able to do anything about it but wait. It is excrutiating. 

But ... we do get to go home. We think we may leave tomorrow or the next day. We are not quite sure of the plan. Right now it seems that the plan is to go home to monitor disease and to wait for relapse or disease progression. 

You may be thinking that we should be happy and we are - Phoebe is here and thriving and of course we are happy, but we are also exhausted. The research we need is behind Phoebe. We have also tried many things and when you have tried many things and are in the place we are in you hear many times how small the chances may be and how data and statistics are not in your favour. And when these things that we try continue to fail and things do not work in our favour, we worry that these great doctors that have been working and advocating and fighting for Phoebe, will deem it too difficult. We worry. All the time. 

We are in a place where there is no right answer. Where there is no set path. It is a place of extreme frustration, but it is also a place of beautiful hope. Phoebe has proven once again that anything is possible.

Through leukemia and relapse after relapse after relapse, she proves that anything is possible. 

On a lighter note, a little story about Phoebe's experience in Denver. When we arrived she was on steroids and feisty. She brought new meaning to feisty. She fought constantly with her doctors and nurses and like a school teacher told her new and very kind doctor that "she was on red " and also that she "wouldn't be getting a check" ... then after a sedation while her nurse was helping her to get dressed and commenting on how big she is for a four year old, Phoebe sat up straight, pointed her little finger at this nurse and said "I'm three. And I'm not going to see YOU when I'm four". I guess she was right. Unlike we had expected, we will not be in Denver for Phoebe's fourth birthday. 

Thankfully, the folks in Denver also got to see a bit of happy and joyful Phoebe, when the effects of the steroids finally wore off.

Go Phoebe go.

"She believed she could, and so she did". 

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