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, January 19, 2012

Breaking Ground

We had a visit with Phoebe's doctor today.  She is doing well, her blood work looks great and he commented happily on how wonderful she looks. She, of course was smiling, laughing, playing and doing her thing.  She also appears to have a soft spot for her transplant doctor, and for good reason - she is wise and he is working hard to save her life.

Phoebe is now a whopping 9kgs, she is eating, growing, developing, and everything is moving forward which is so great. There has, however, been a giant elephant in every room that we have been in for a little while now.  Something that we have avoided asking or talking about, and depending on which one of us you talk to - we don't want to know.  I am referring to odds, statistics, and Phoebe's chance of relapse.  Before her first transplant we were told that she had a 30% chance of success, 70% of relapse.  This time around, the odds are the same.  I am not sure how I feel about this.  On one hand, although it may seem odd - to hear 30% makes me feel wonderful and full of hope - 30% is a heck of a lot more than zero, and after such an early relapse and all of the other odds and obstacles that have continually been stacked against Phoebe, I would have expected lower.  I will take 30 and treat it like it is the 100 % that it will most definitely be.

Our doctor also explained that Phoebe is part of a five year study, targetted at improving survival rates for children like her who are going through a second transplant - the hope is that the transplant that Phoebe received will prove after 5 years, to be more successful, to improve the odds, but right now there is not enough data to support this and so we have 30%.  We are lucky.  Phoebe is receiving cutting edge and ground breaking treatment and we may be sitting on the edge of something very wonderful.  Who knows what will be discovered.  I know that in five years, when my baby is in grade one, I will look back and marvel at all that she has done and continue to thank the folks at St. Jude for their unwavering hope, determination and fight towards a cure.  

But still, despite all of this, there is fear present everywhere and all the time.  Sometimes it is so overwhelming that it is best to not go there - to focus instead on the wonderful chance that Phoebe has been given rather than the possibility of its failure.  Afterall, Phoebe has proven time and  time again that she is better and bigger than this cancer and the odds that have been stacked up against her.  She is mighty, strong and she is winning this fight.  Our doctor mentioned that to be in a good remission, like Phoebe was before transplant, with no evidence of disease is a very good thing.  Nothing short of a miracle that should be celebrated.

We have the entire weekend free from hospital visits before Phoebe's lumbar puncture on Monday.  The sun is expected to shine here in Memphis and I think we will make the most of this time together, and focus on all that we have and the many, many things that we have to look forward to.

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”  Lance Armstrong

1 comment:

  1. very good news to hear! Good luck with the lumbar puncture today. I will be thinking about you...yes hope is very important, its the only thing left when we have a sick child. You have been full of hope since the beginning of this journey and it's wonderful.Our son had around 40% chance of survival because he had lots of complications in the beginning of the treatments (leukemia). He is now healthy and full of energy! Never give up!