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 1, 2013

Welcome back Phoebe

We made it to Memphis. Yesterday was a busy day, filled with appointments for Phoebe and I. Phoebe saw the radiation oncologist, her transplant doctor, nurses, child life, she had her blood taken, a check up done, and we did a lot of talking and listening to her wonderful doctors.

The day started at 8:30 in the morning, and ended at 5:30 with a talk with Phoebe's transplant doctor. A doctor who we are so thankful to have on our team as he has done wonders already in the treatment of Phoebe's disease.

We are happy to be here. We wish we were home, healthy and tucking our kids into their own beds each night, but if we have to fight cancer, this is where we need to be.

We saw many familiar faces yesterday, families that we met when first here who are back for a check up, or back to fighting cancer again like us. Nurses, doctors, child life specialists, staff in the cafeteria and coffee shop, all who we came to know. All greeted our news with a similar answer - I am so sorry that you are faced with this, but happy you are here to face it.

The radiation oncologist has been brought into the picture because our transplant doctor is concerned that without something to target Phoebe's belly, where the relapse occurred, a relapse would just happen again. We are in uncharted territory, however, and we heard often yesterday that Phoebe is unique. As rare as the infant Leukemia that Phoebe has is, it is even more uncommon to relapse in this way. What makes things difficult and complicated is that chemotherapy and cellular therapy will not effectively penetrate nasty cells that may be hiding in the belly as it needs to, hence the reason to consult with radiation oncology and also some insight into why Phoebe relapsed here when the transplant appeared to be so successful.

The trial that Phoebe is here for is one that will use my natural killer cells (my appointments are to make sure that I am able to be her donor again). This trial is different from the first one she received in that these cells will be expanded and modified, making them more plentiful and targeted to kill her leukemia cells. It is a new trial so there are many unknowns but Phoebe may have an advantage in that she is getting cells from her original donor, and my immune system has already proven effective against this Leukemia. It gave us one year without cancer.

Phoebe has an MRI and bone marrow aspiration scheduled for Monday and these tests will help to determine our path. She needs more than 5% disease in her bone marrow to qualify and the results of the MRI will help all of the doctors decide if radiation is necessary.

For now, we are all settling in, soaking up the sun and the hope that Memphis and St.Jude are providing and anxious to really begin to treat and with hope, cure, this cancer for good.


  1. What a sweet picture. I hope the tests and procedures all go smoothly for you guys. Alana (boynamedsilas.blogspot.com)

  2. This is wonderful news. Upon arriving to my shift this morning at CHEO, one of the first questions I asked was about Phoebe and the trial. The very positive (and loud) answer I received from Brenda elicited nothing but hope and smiles in the 4North Playroom. The kind of thing that happens when children like Phoebe are around. I cannot begin to put into words how blessed I feel to have been given the opportunity to not only meet, but interact with the kids on 4 North, and your Phoebe is no exception. She is a beautiful little girl with a fighter's heart and more strength that I could ever hope to have. Her story has touched my heart in such a deep way and I want to take this opportunity to thank you for sharing it. On behalf of all the volunteers and the staff on 4North, we miss our little Phoebe already and cannot send enough love, hope and prayer your way.