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, September 28, 2011

Going to Memphis

Earlier today I went to the passport office to apply for Phoebe's passport.  Thanks to a very thoughtful nurse practitioner at Sick Kids, the photos were taken at the hospital by the hospital photographer.   This meant that Phoebe was able to avoid the busy streets of Toronto and a crowded photography shop. With that first step out of the way, and plans to pick up the passport tomorrow afternoon, I called St. Jude to organize our arrival.  The doctors would like us there by October 6th (which is also my birthday, so happy birthday to me), and so we are making plans to leave the big city on the 5th.  This is all very exciting and incredibly overwhelming at the same time.  We have no idea what to expect but from what we have heard, and the few people we have spoken to, our expectations are high.   

We received some clarification today, from our doctor at Sick Kids, about what the plans are for Phoebe at St. Jude.  It seems that there are a few clinical trials that she is eligible for and what happens will depend on Phoebe, on whether or not she is in remission already and on how deep in to remission she is.  She may need more chemotherapy or treatment to help her get there, or if she is in a good remission, she may be able to go directly to transplant.  We have a lot of faith in our doctors, we have to as often we are moving forward without really knowing where we are going.  We do know now that we are all moving in the same direction, and that is towards a cure and that is enough to keep us going.

Phoebe is doing well, she has been without a fever for the past three days, so she has been taken off all but one of her antibiotics.  This means fewer beeps from her IV pump, and more time to play because she is not constantly being premedicated with sleep inducing gravol and benadryl to prevent side effects and allergic reactions from the antibiotics.  She has one more day of steroids and another dose of chemotherapy, and then she has a scheduled "wash out" period - part of the eligibility criteria for all of the clinical trials at St. Jude.  The plan is to test Phoebe's bone marrow once she gets to St. Jude and then we will be able to see if all of this chemotherapy has been successful and decide what our next steps will be.   

We are all very excited to board a plane on Wednesday and to start this next chapter.  Although we have no idea what to expect, we know that by going to St. Jude we are going to where Phoebe needs to be right now, and everyday we are moving closer to a life that is free from cancer and all that it brings.  Mae is also very excited, and if you ask her she will tell you very matter of factly that she is going "to get Phoebe all better, going to Memphis".  Hearing this breaks my heart a little bit as it reminds me of all that Mae has endured, but also of her incredible resilience, her strength and her awareness that she too is helping Phoebe to get better.  I believe that her energy and spirit is something that is willing Phoebe to fight, and one day they will both have the chance to reap the rewards of all of our persistance, determination and hard work.  

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