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, February 8, 2013

Sister cuddles and more chemo

All things are well here. Or as well as can be expected when you are in a new city and battling cancer. We had a meeting with Phoebe's transplant doctor today, the main purpose being to sign consent forms for the next part of treatment. More chemo.

We were originally apprehensive about Phoebe having more chemo as we were hopeful that she would qualify for the NK trial, or that her own immune system would be considered strong enough to keep the disease at bay while we wait. Our doctor, however, is worried that while we wait for radiation to start and finish, and because it has been some time since Phoebe has had any treatment, and because her bone marrow is most likely not in complete remission (we have yet to hear chimerism and MRD results), we need to give something to make sure that we remain in control of the disease in her bone marrow while we hopefully eliminate the disease in the pelvis. The chemo is much of the same that Phoebe has received since this relapse and has done wonders already by shrinking the mass completely and we are hopeful that this will continue. It is also, as far as chemo goes, relatively well tolerated by Phoebe and it is a short cycle, meant only to take her through to the end of the radiation treatment, at which point, her doctors will reassess.

We do have the weekend off from hospital life once again and we will be breaking free from the hotel room in which we are all staying and getting some much needed fresh air. I think the week ahead will be a busy one for Phoebe and so we will take our free time and cherish it while it lasts.

We are feeling hopeful but overwhelmed. Hopeful because we have a wonderful team of doctors and nurses dedicated to Phoebe's care and to doing all that they can to get her well, but overwhelmed because we are very much in uncharted territory and despite how intelligent and amazing the doctors we have met are, there is not one who can tell us what the right thing to do is and right now we have already tried many treatments unsuccessfully. I have to believe that the path we are on will lead us to a cure because frankly, if I let the other much darker thoughts in, I will risk losing this faith in our doctors and the decisions they are making and my faith in our ability to get through this.

I have always believed that regardless of the hurdles that Phoebe may have to face to get her well, these hurdles that have and continue to prove to be immense, well she will be. I will not give up on that now. I need to believe because without this and without hope, what else do we have?

And when I look at Phoebe who appears right now to be a picture of health, my belief in her cure and in her ability to get well, just becomes stronger. Together, we will do this.

This morning Phoebe and Mae woke up cuddling. Literally, cuddling. Their little arms wrapped around one another in a beautiful embrace.

Phoebe has to get well.


  1. I wish you all the very best. Stay strong. Saw your website from Molly Campbell's site. From Victoria BC

  2. Love the cuddle picture. And I hope Phoebe is completely healed as well. Until then, strength to you for each and every day. And maybe a few fun things to do when you're far from home. Alana (boynamedsilas.blogspot.com)