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.

Thursday, August 11, 2011

One day at a time ...

We learned earlier this week that the doctors from St. Jude's have no treatment options to offer Phoebe at this time.  More devastating and difficult news.  We were really hoping that these doctors would have something to offer Phoebe.  An innovative and new treatment that would surely fix her.  Despite this news, our doctor from Sick Kids is continuing his search.  He is aware that Jon and I would like to try whatever is out there to give Phoebe another chance to rid her body of this terrible disease, so he is inquiring at different transplant centers both near and far from home.  He and our doctor from CHEO both agree that treatment has to be novel and somewhat experimental because standard therapy was unsuccessful.  They are thinking outside of the box, looking outside of the country, and if there is something out there, I am certain that they will find it.

Today we sat down with our oncologist from CHEO and finally got some more answers to some of our questions.  She expects to have an answer about further treatment by Monday.   If it is a clinical trial that is found, Phoebe will have to be considered eligible, and there may only be phase 1 trials available, mainly because of the lack of research in this area.  Phase 1 trials are considered experimental, but we are hopeful that something different and experimental is what will ultimately help Phoebe. 

Until then, we have another weekend visit to CHEO to have Phoebe's blood tested.  She received another platelet transfusion today, and it now seems that her little body is unable to keep up as she is needing more and more transfusions.  On the outside, she still looks great.  She is full of smiles and laughter, and it breaks my heart to think about what is going on inside of her.   Every day that we have together is a gift, and I realize as I never did before, just how precious time is.

There hasn't been a moment throughout this entire journey that we have stopped believing in Phoebe, and in the fact that she will be okay.  Whenever I speak with my dad about Phoebe, no matter how small or insurmountable the challenge I am describing to him is, he almost always stops me and says "hold on, let me get my vision".  I imagine him closing his eyes and then he says "... okay, there she is. Running for the school bus".  There she is indeed, bright and shining Phoebe Rose. 

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all"  - Dale Carnegie

1 comment:

  1. Hi Jenny
    Has your doctor checked the Cancer Clinic in Freepot Bahamas? I understand they have quite a different approach to treating cancer and have patients that travel great distances to be treated there. I saw an incredible difference in a patient in a two week period while I was holidaying there. She could not walk without assistance and had a terrible cough when she arrived and soon she was able to swim a couple of miles (maybe 3) along the shore, without a break and I don't remember if she still had a cough but it was not noticeable. It was an amazing improvement in a fairly short periof of time. Spoke to two other cancer patients being treated there and they also were very pleased. I don't remember their details. I seem to recall the clinic has a more natural approach. Definitely different from traditional treatment.

    I am so sorry you all are having to walk this walk.

    Good luck and prayers to you all. Thanks for keeping us up to date. You and Phobe are both amazing!

    A fellow Canadian