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.

Tuesday, September 13, 2011

A plan ...

This morning, at the suggestion of our oncologists, we met with the palliative care team.  A doctor and nurse who specialize in palliative and supportive care came to Phoebe's little room to speak with us.  We were dreading their visit.  We felt that bringing them into the picture meant that we would need to prepare for the worst, and we were frustrated at our doctors for suggesting this as we felt that it was one more way that they weren't listening to us.  Thankfully, we were wrong.  We learned that although to meet with palliative care specialists usually means that your child's condition has worsened and that their options are few, part of their job is to support families through difficult decisions, and to help Phoebe manage symptoms of her disease.  They agreed that as long as there are options we should pursue them and after speaking with them and explaining how we feel and what we would like - for the first time in a few days, we felt like we were really listened to. 

Now to go back ... yesterday our meeting with two of Phoebe's oncologists was frustrating.  Frustrating is the best word that I can think of to describe it but it really doesn't do the meeting and how we felt justice.  There have been times throughout this journey where we have felt like not only are we fighting cancer, we are also fighting against and with doctors - trying desparately to be heard,.  All of the doors that had been open to us before the clinical trial seemed to be closing, and all of the hope that we felt was shared by our doctor was suddenly gone.  The meeting was to discuss options, and once again we were given two.  Take Phoebe home, keep her comfortable and enjoy this time, or try once again to cure her.  We were clear and straightforward in our speaking, we had decided before they stepped foot in the room.  We want to move forward with curative therapy.  To this, the doctors said - okay i'm hearing that you want to go ahead with treatment, but I am going to give you a couple more days to think about it.  Really?  As I write this, I am still angry.

So that was yesterday, and today is a new day. After the meeting with the palliative care team, we had another meeting with Phoebe's oncologist.  It would seem that despite our frustrations, we were listened to and our wishes were respected.  A plan has been put into place that includes a re-induction of chemotherapy with a goal of remission.  Once in remission, the next step will be a second bone marrow transplant. The plan is loose and many details, mostly related to the transplant need still to be worked out, but the intended outcome is to cure and we feel relieved to finally have a sense of where we are going, and how we might get there.

As always, we are going to take everything one day at a time and we will continue to take our cues from Phoebe.  Bright and shining Phoebe Rose.  We know that the treatment may make her sick, and that she will probably have some difficult days ahead of her, but we are hopeful that those difficult days will lead us to a cure. 

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