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.

Wednesday, April 3, 2013

Home sweet home, once again.

We are home. This feeling of coming home after time away has become somewhat familiar to us. The excitement, the joy, the looks of pure happiness on Phoebe and Mae's faces. It is always so good. And it is so good to be home.

We are thankful for family and friends and to be back among these people that we love and have missed.

Soon after our arrival, Phoebe's doctor from St.Jude called and so we now also have some answers to our questions. I really can't say enough about how wonderful the doctors that care for Phoebe are. Despite this disease that has proven so difficult to cure, the amount of treatment that Phoebe has received, the number of times she has relapsed, and the odds that continue to stack up against us, there is always a beautiful glimmer of hope in these conversations. The heartache we went through with Phoebe's first relapse, almost two years ago, and the fight we had to have to convince our doctors at home that it was worth it to try one more time to cure Phoebe, has me always expecting the "talk". The talk that parents who are in a situation like ours come to expect. Depressing and heartbreaking talk of odds, slim chances, risk versus benefit, toxicity, trying to decide what is best from the dismal and sad options available. While we have had our fair share of these talks, today I was met with hope, optimism, and promise. Not promise of a cure because that is something that no doctor can promise to us right now, but promise to try to do as much as is possible. Promise of contingency plans, promise to search for options. To advocate for Phoebe. This warms my heart.

We have truly remarkable doctors on our side. And I like to think that Phoebe has changed some minds about just how impossible some things may seem. She has made believers out of her doctors. Or more likely, many of them have always believed.

The plan, that is agreed upon by our doctor at St.Jude, SickKids and CHEO is to continue a regimen of maintenance chemo. This will be low dose chemotherapy, given for a year, with the hope that it may be all she needs to remain without disease for life. It will allow her to live a somewhat "normal" life as although it will suppress her immune system, it is not designed to wipe it out or make her sick. If she gets sick we will stop, her doctors have said. She will also be monitored closely with regular bone marrow aspirations and scans every 3 months or so. Samples of bone marrow will be sent to St.Jude for testing, but most of the tests will be done at home. Phoebe will get to live her life. I would go back to St.Jude for each and every test if that was what was decided. It is there that I feel the safest and it is there that I feel closest to a cure, but it was clear when I spoke with Phoebe's doctor that he wants her to live her life as fully and as normally as possible. It is not about me, after all, and he is right.

The plan is to give us time with a hope and a goal to cure Phoebe of this disease. There is no right answer or right path to take. There is no one who is just like Phoebe and so she is blazing her own trail and we are following the advice of these doctors who have Phoebe's best interest at heart.

When I spoke with this doctor today about the potential of still getting into the NK trial at St.Jude - I asked about it for the future, for when it is in its next phase and therefore not requiring so much disease to qualify. He replied, well I hope Phoebe will be cured by then or have pursued other innovative treatment.

A believer.

Because really, when you are faced with this reality and these never before charted waters, why not believe that anything is possible. We have had nothing but good news since beginning to treat this relapse. Phoebe has surprised her doctors and exceeded all expectations. She has fought and proven that it is worth it to try one more time. Or as many times as we need to to guarantee a life time and a cure.

We are home. We are blessed. We are grateful and we are full of hope that Miss Phoebe will continue to shine.

She is mighty.

Thank-you also to our community of believers. To each of you who have come along with us on our journey. We are still traveling but on a road made easier by your love and support.

Phoebe hopes to see some of you "out and about" soon.

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