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.

Thursday, May 16, 2013

The journey continues ...

Tonight Phoebe was featured on CTV as one of the many amazing people in her community.

Today we learned that the bone marrow sample that was sent to St.Jude, came back positive for Leukemia. It is at a very low level, less than one in ten thousand cells, but coupled with the word "lesion" on the MRI report, it is enough to send me over the edge. I am so sick of this disease and what it is doing to our family. What it has the potential of doing to Phoebe terrifies me. I cannot put into words how this feels. I have no idea what this means. I am exhausted, angry and so very weary. I am allowing myself today to wallow in this misery. The misery that is infant leukemia. Tomorrow will be a new day.

Throughout this journey, I have rarely stopped to ask why, but today I had many of those moments. Why us? Why Phoebe? What went so horribly wrong during my pregnancy when I tried to do everything right? Why are we continually asked for so much? Hasn't Phoebe fought enough? Hasn't she given enough? We have been without any FDA approved or guaranteed options for treatment for almost two years. That is two years of grasping at straws. Two years of clinical trials, of trying to get innovative and new treatment, of praying for the last spot in a study that is "promising". Two years of packing up and moving.

Fighting desperately for just one more chance.

We spend our days researching and searching and are doing all that we can. We feed our kids healthy and organic, we give them all of our love, Phoebe takes vitamins and supplements, we understand and try to implement any so-called natural "cure" that makes sense. This leukemia is built into Phoebe's DNA - it is smart and it is fierce. But we are not backing down.

Ask Phoebe if she is sick and she will tell you no. She will tell you that she used to be sick. She may even tell you that she used to vomit a lot which is the truth, but today, oh no, today she is fine. This means something to me. Phoebe has an unstoppable and fierce will to live and to beat this monster. She, pure and simple, and just like the meaning of her name, is bright and shining, and she inspires me everyday.

She is an amazing person.

It was in July of 2011 after the first relapse that we were told that Phoebe had weeks to live. Told that the leukemia that was left to rage untreated inside of her would most likely take her life. That there were no options for a cure. We have had almost two years of life since then.

Two years.

Two birthdays and so many joyful and unforgettable moments. We have lived with and without cancer, we have been witness to terrible and heart wrenching moments, but we have also managed to flourish and grow and simply be. I have cherished each and every moment. Why I have had to cherish moments and pray that i will be given more, I will never completely understand, but we have and will continue to take this life and make of it all that we can.

And we will Believe because Phoebe does. And we will believe because we have an amazing team of doctors on our side, doctors who are working hard for Phoebe.

Please pray for our girl. Please pray for options and a cure.

Thank-you to the journalists, producers and everyone at CTV news who had a part in so eloquently telling Phoebe's story and bringing this disease to the forefront. You can watch Phoebe online at http://ottawa.ctvnews.ca/features/amazing-people

1 comment:

  1. Praying for your family. Dear God of the universe, you are all powerful. I ask you to bring a breakthrough of healing over Phoebe. Lord give the rest of her family strength and peace. In Jesus name.