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, April 15, 2011

The one and only Phoebe Rose

Yesterday we had our meeting with Phoebe’s transplant doctor from The Hospital for Sick Children in Toronto. The meeting went well, but I was completely unprepared for all of the statistics that we heard. I think I have blocked out a lot of the information that we were told in the beginning, and I think too that our doctors here were very careful to tell us as little as possible about the statistics related to Phoebe’s cancer.  In the beginning, we spent a lot of time reading and researching and then decided that reading countless statistics and studies was pointless.  If we have learned anything since we have been at CHEO it is that Phoebe is a wonderfully unique individual and because this is true, the statistics might as well read one hundred percent chance for a cure.  There is only one Phoebe and how she responds to treatment or anything else in life, will be different from anyone else. 
Looking at Phoebe it is hard to believe that she is really this sick, that there is something so terrible and dangerous inside of her.  As I write this Phoebe is sleeping peacefully, twisted into her favourite position, perfectly plump just like any other 8 month old baby.  Yesterday, when our transplant doctor was listing off all of the possible complications from the two 2 different types of pre-transplant conditioning methods: radiation plus high dose chemotherapy, or high dose chemotherapy, I remember thinking "is this actually happening?".  Unfortunately it is and he was telling us the two types of conditioning regimens because he was asking us to choose.  A difficult decision, but wonderful that we are being included in decisions about Phoebe's future. We chose the high dose chemotherapy instead of radiation, which he explained has fewer long term side effects.   
Our wonderful donor, wherever he or she may be is prepared to donate on May 12th, so that will most likely be the date of Phoebe’s transplant.  We will go to Toronto about 10 days before that in order to prepare Phoebe for the transplant.  Her “pre transplant conditioning” is six days of high dose chemotherapy.  She will receive 3 different types of chemo each about 3 times stronger than the chemo she has already had. The doctor explained that with a transplant, the chemo can be stronger because the purpose is to wipe out the bone marrow, not allow it to recover.  He said they are limited only by the organs, the chemo cannot be so strong as to damage the organs. Following the chemotherapy, Phoebe’s body will be rescued by the donor’s stem cells. And then we will wait. Wait for her new bone marrow to engraft, and to start making new cells.  Throughout this process we have done a lot of waiting and we have developed an incredible amount of patience.  Although we have waited countless times for Phoebe’s bone marrow to recover  I have a feeling that the waiting that we will be doing in Toronto will be much more difficult.  This time we will be waiting for our donor’s marrow to start making new cells.  For Phoebe’s little body to recognize it, accept it, and allow it to grow and flourish.


1 comment:

  1. blessings to this wonderful donor. I think we need to think of a name for her/him so we can thank him/her quietly in our thoughts. Ideas?