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.

Monday, June 9, 2014


Phoebe has been busy. Since we learned of this relapse, we have been back to CHEO every other day for blood work.  All continues to look good with Phoebe's blood work and everything is within normal range. We have seen no changes. This is another small victory. With previous relapses, we have found ourselves racing against time, desperate to calm the storm inside Phoebe's little body, all while watching her tire out after the smallest tasks and looking sicker with each day. This time it is different, there are no symptoms, no signs; Phoebe runs and she plays, she is the first to wake up in the morning and often outlasts her big sister at bedtime, she is eating as she usually does - a lot, and she is joyful and feisty. What we know is happening, because we have seen bone marrow results and pathology reports, just doesn't match what we see in front of us everyday. Phoebe is not a sick little girl.

We are going to have another bone marrow test done on Thursday. We want to see what is going on. We are worried that this disease will rage out of control, but we are also worried that doing something right now, like giving a low dose chemo to control the disease, could make Phoebe ineligible for any clinical trials. When Phoebe relapsed the second time, the low dose chemo she was given ended up surprising everyone and putting her disease in to a complete remission, making her ineligible for any trials or new treatment, and so she received the same outdated old drugs that are obviously not working. Given how Phoebe's disease presented so aggressively at diagnosis and with each relapse, her doctors recognize that something is different this time. They think that there may be a fight going on between the monster Leukemia cells and my stem cells. We hope they are right and we hope that we are winning. We believe we are, even in the face of all that we know this disease to be capable of, we have to believe this. It keeps us going each day, but we are also realistic. We have fought this leukemia for too long, we have lost too many friends; we are all too aware of what we are up against. It is terrifying and we live our days in a constant state of stress and disbelief, alternating between pure joy as we watch Phoebe and Mae play, to pure heartache as we confront the harsh reality of our situation and push the impossibly difficult thoughts out of mind. We have faced incredible odds for some time now and we have tried many things.  

Despite all of this, we have hope and we have a complete family. This gets us out of bed each morning, it fuels us as we move forward with very little knowledge of where we are going, and Phoebe is its very essence. She thrives in the face of this cancer. She is bright and she is shining just like the meaning of her name. 

And so, we hope that these bone marrow results bring good news and if they don't deliver good news, then we hope that they bring us closer to a plan. We hope we are able to get this new treatment and that it is "the" answer that we have been searching for, it certainly appears to be very promising. At the very least, we hope that tomorrow brings progress and another step forward. 

We hope we finally have an answer from OHIP. Phoebe's doctor was asked to send more information today. It is not okay that we are left to wait with an acute and aggressive cancer. This treatment should be available in Canada or if not, it should be accessible to Canadians. We need to start helping and supporting the people who are working to save the lives of children with cancer. 

Here is hope personified. This is what fuels us. How can we be anything but positive and hopeful when we see these beautiful faces each day? 

1 comment:

  1. Jenny- your writing cuts to the bone, but it also offers such a sense of hope. You offer your readers such a sense of calm, while you are living through a hurricane. So much love to you all, and especially to dear Phoebe. I don't know her personally, but she is the last person I think of each night as I fall asleep. I close my eyes and imagine her cancer being washed away. I wish it were so easy, but I hope for you a new tactic to combat this disease.