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.

Wednesday, August 3, 2011

Believe

Yesterday, Phoebe's blood work showed that her white cell count is 54, down slightly from Sunday and a step in the right direction, but still very high.  She is taking a mild chemotherapy drug which appears to be working to help it from climbing any further, but is not designed to fight the Leukemia.  Over the past few days we have struggled with many uncertainties.  Wondering what our next steps would be, and if there are any options for treatment of Phoebe's cancer.  We spoke with Phoebe's doctor from Sick Kids today and thankfully, we got some answers. 

He explained that Phoebe's cancer is obviously very aggressive, as it has appeared again so soon after transplant.  He basically told us that we have the option of taking one of two roads.  One will involve keeping Phoebe comfortable, and giving her the most wonderful quality of life.  The other road, and the one that we were more interested in discussing, involves experimental treatment and a temporary move to a ground breaking research hospital many, many miles away from home.  Although treatment seemed to go well for Phoebe, the fact that her cancer has relapsed so soon proves that it was not successful, and our doctor thinks that more standard medicine, even if the option were available, will also fail her.  He is referring Phoebe to St. Jude's hospital in Memphis, in the hopes of enrolling her in a clinical trial.  It is a pilot study aimed at patients who have relapsed or who have not responded to traditional chemotherapy protocols and it may be a chance for Phoebe to finally rid her little body of this terrible cancer. 

We are optimistic and hopeful, but also very grateful that there is another option for Phoebe.  When we first embarked on the road to transplant we were told that if this were to happen, there was nothing that could be done.  No treatments, however experimental they may be, were available.  Now, just a few months later, we have another chance.  There are many people hard at work behind the scenes working to find a cure for people like Phoebe, and to them we are very thankful.

The next few days and weeks still hold many uncertainties.  Although Phoebe looks good and is still full of energy and smiles, not a minute passes by that I don't think about the cancer and what it might be doing to her body.  We will be back at CHEO tomorrow to have her blood tested again, and are hoping for good results.  She will have to be accepted by St. Jude's, and deemed a good candidate for this particular clinical trial.  If (and when) she is accepted, we will once again pack our little family up, this time moving further away from home in the hopes of finding what will eventually help us to be home and together once again.  As usual, we are following Phoebe's lead, and everything about her energy and her spirit tells us that she is not ready to give up fighting.  The cancer may be aggressive, but it can never be as powerful and strong as Miss Phoebe Rose and all of those that love her. 

Each night as I put Phoebe to bed, I whisper to her that tomorrow is a new day with many new possibilities, opportunities and chances for a miracle, and I believe this with all of my heart. 









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