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.

Friday, December 21, 2012

Step one ... complete

Step one is complete.

Phoebe and Jon arrived at SickKids late on Tuesday. On Wednesday she had surgery to insert a new central venous line - this is line number 10 and comes out of her chest. It is where all of her medicines and blood products will be given, and having it avoids the many, many pokes that Phoebe has endured over the past 10 days. She also had a femoral line put in to prepare her for the t-cell collection.

On Thursday Phoebe had her t-cells collected and the photo below shows her sleeping through this procedure.  Her blood was removed from one line, then separated to take out the t-cells, and the rest of her blood was put back in through her other line. She was able to collect enough cells on one day, which is good news, and meant that her femoral line was removed and she was restarted on steroids.

The t-cells should be on their way to Philadelphia. 

As I write this plans are being made to bring Jon and Phoebe back to Ottawa. She will be readmitted to CHEO as she is still very much in the acute phase of all of this and her electrolytes, among other things, have to be closely monitored, but we have a plan and we are moving forward.

Part of this plan is to wait and see. Wait to see how Phoebe's t-cells grow in the lab in Philadelphia, and whether or not she will be eligible for the trial. The concern right now rests in the fact that she has had steroids, something that was unavoidable due to the rapidly growing mass in her pelvis, but the doctors in Philadelphia are not sure if her t-cells will grow as they need to given the steroids.

We are taking things one day at a time and following the advice of Phoebe's many wonderful doctors. The plan in terms of treatment right now seems to be to give lower doses of chemotherapy, to hopefully shrink the mass and manage her disease while we wait to hear about one or both of these clinical trials. In the words of Phoebe's doctor at SickKids, high dose chemotherapy will not cure her and he is concerned both about how this would affect her eligibility for innovative and hopefully curative therapy, but also about the fact that to give her body more chemo in high doses, could possibly do a lot of harm.

The trial in Philadelphia, he said, is promising as the goal is to harness the power of Phoebe's immune system to kill Leukemia cells and if it is successful it has the ability to essentially vaccinate Phoebe against her cancer. It will use an inactivated form of the HIV virus to alter the immune system and train it to find and kill Leukemia cells. It is innovative and very promising research and we are very lucky to have it as an option.

But for now we wait. Wait to hear from Philadelphia. Wait to see improvement in the size of the mass. Wait for a treatment that will hopefully cure our Phoebe.

While we are waiting we will surround Phoebe with as much love and support as possible. We will follow her lead; which is joyful and strong and full of life. And we will enjoy this time.

This journey has taught us, among many things, that time is precious, and that whether it is spent in the comfort of our home, or in the hospital, it is a gift.

Phoebe and her new friends, the Ottawa Senators.


  1. Look at the precious face surrounded by all of those handsome guys. She will appreciate this one day. Hugs and prayers!!!

  2. Cancer taught our family the same thing, that each moment of each day is a gift. We are praying for your precious and adorable Phoebe and your family as you face the days ahead ~ praying for Phoebe's miracle, her cure. Sending love & hugs to your sweet girl and your entire family and friends.

  3. So glad to hear of all the positive things she has going for her treatment wize. She looks amazing!! Glad we can keep up with your story. Hang in there Jenny, you are all the strongest family

    much love, Megan