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, September 11, 2011

Super Baby

Yesterday morning, after meeting with Phoebe's doctor and seeing that her white cell count had only climbed up 3 points to 40, we decided to wait - we desperately wanted the study drug to prove to be as magical and promising as it had in the beginning and our doctors remained hopeful in that possibility.  By mid afternoon, her white count had climbed to 65, and it became painfully clear that the study drug, although it appeared to work very well in the beginning was not successful.  We quickly moved on to Plan B and started Phoebe on chemotherapy in order to bring her white count down and help to ease some of the symptoms of her Leukemia.  Phoebe is quite asymptomatic, her only trouble being her very large belly - made large by a growing liver and spleen that is most likely also full of Leukemia cells.  Because her belly is so big it is pushing up on her lungs and her breathing is heavy and laboured.  She is still getting enough oxygen and able to play and be her one year old self, but it seems that she is working harder.  We hope that the chemotherapy will help to relieve some of this burden and allow Phoebe to be more comfortable.

We are meeting with Phoebe's primary oncologist on Monday.  He is a wonderful doctor, full of knowledge, hope and optimism.  A main focus of many of his is drug development and he is working to bring additional treatment options, new drugs and clinical trials to Canada.  We are anxious to speak with him and to learn more about next steps and to hear his ideas on what the best treatment is.  To treat such an early relapse seems to be fairly rare and at times we feel like we are in uncharted territory.  No one seems to know how Phoebe's bone marrow will handle aggressive chemotherapy and if it will recover.  To prepare for what will most likely follow a remission, we have also spoken with Phoebe's transplant physician who agrees that it is worthwhile to try to treat Phoebe's cancer but wants a second transplant to be innovative and novel as standard treatment was not successful.  We all agree that all things related to treatment must be taken one day at a time with a first goal of getting Phoebe safely through a re-induction of chemotherapy and her cancer back in remission.  


Today, after one dose of chemotherapy, Phoebe's white cell count has fallen to 23.  It is a step in the right direction and we are anxious to take many more steps this way.  As for Phoebe she is handling things very well.  One of the drugs she has started is a steroid, which comes with many short term side effects.  Among them, is an increased appetite.  As I write this, after polishing off nearly half of an avocado, Phoebe is happily munching on a banana.  The steroid also affects Phoebe's mood and behaviours as it would a bigger person too.  Phoebe becomes somewhat of a super baby.  She plays hard - lifting her toys above her head and then crashing them back down on to the mat, all the while hollering in what can only be described as a tarzan type of way, babbling and squealing.  She is restless, very excitable and harder to settle down for a nap, but still very joyful.  Before all of this, I could never have imagined  giving my baby steroids, but they like many other things we have encountered on this journey, are a necessary evil.  They work to fight against the cancer, and that - is a good thing. 













2 comments:

  1. Everyday I pray and wish and beg for little Phoebe to get the treatment to cure her! Because of you I am now registered on the bone marrow ( one match ) in hopes that I can help in some way! I'm sending all my love and positive thoughts your way little Phoebe, and thank you for making me a better person!

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  2. Thank-you Melanie, your prayers and wishes for Phoebe's recovery mean so much. And so wonderful that you have registered to become a bone marrow donor, such an incredible gift to give :)

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