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, March 29, 2012

Happy doctors. Joyful news.

Throughout this journey we have witnessed many different emotions on the faces of Phoebe's many doctors. Among many others there have been, sadness, sorrow, exhaustion, anxiety, fear, worry, confusion, frustration, regret, surprise, amazement, and joy. Today, thankfully, after hearing our doctor tell us more results of Phoebe's bone marrow tests, we saw joy. I heard the chimerism results today while we were at the hospital and they are 100% donor cells. In both Phoebe's bone marrow and her blood. This is wonderful news as it means that Phoebe's body, her bone marrow, is no longer producing cancerous cells, only donor cells. Healthy cells.

Later today, in the evening, I heard pure joy and happiness in the voice of Phoebe's doctor who called us at home as soon as he saw the final results. After running MRD (minimal residual disease) tests, Phoebe's bone marrow is negative for Leukemia. It is also negative for the MLL (multi-lineage leukemia) gene rearrangement and not a single solitary bad cell was found. This doctor told me that this news made his day. A happy doctor delivering good news is a wonderful thing.

To say that this news made my day is an understatement. It made my year. My life. And while the future holds many uncertainties and it will be years before Phoebe is considered "cured", I am taking this good news and running with it. As far as I'm concerned my Phoebe is cured. I believe she is and I am going to try hard to ward off the dark clouds of worry that often plague a parent whose child had cancer.

Phoebe is a wonderfully joyful soul. She has had a very rough start to life and she has fought harder than any person should have to just to survive, but survive she has and for the most part she has done it all with a smile on her face. I have learned more on this journey that I ever thought possible and most of these lessons I have learned from Phoebe.. She has taught me the value and importance of time and the pure joy that can be found in simple moments. That at the end of the day, love is all we need. She inspires me to be a better person and I am so proud that she is mine.

And finally, speaking of joyful and simple moments, today I felt closer to "normal" than I have since I learned my baby had leukemia 17 months ago. Today for the first time in her life, Phoebe went to a grocery store. There is a small island community just across the Mississippi river from St. Jude and in it is a very small, very quiet, and most importantly, clean, grocery store. The perfect store for someone like Phoebe who has to avoid crowds and public places. We steered clear of any people and went in quickly to pick up some things for a picnic. And then, just like any other mother with her two kids, I strolled down to the bank of the Mississippi river and had a picnic lunch with my two girls. If Jon had been there, it would have been paradise but it was pretty wonderful all the same.

I have so much hope for my family and a cancer free future that at times it is hard to contain. I want to shout it from the rooftops that my baby is cured. That after fighting harder than any parent should have to fight for treatment of my child's relapsed leukemia, Phoebe is here. She is in remission and the future is bright.

1 comment:

  1. Jennie, you bring happy tears to my eyes this morning as i read your post. You deserve so bad to have a normal life. I am happy for the wonderful news! It is true when you say that when you have gone true cancer with your child, you stay worry and you never forget i think... but your future is so bright and you have learned one important thing is to never take anything for granted and cheris every little moment. I hope you will have many many many more picnics!
    Sophie

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