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.

Saturday, January 19, 2013

Let it be ...

We have no news to share. Or at least of the kind that we are all desperate to hear. The news from Philadelphia.

I have decided, however, that rather than obsessively email our doctors, or worry about what they are going to tell us, I will follow the advice of a wise mother and choose hope. I will do this and continue to focus on what we have. We have Phoebe. She is here. She is not in the hospital. In fact she has the "weekend off" from hospital life and as I write this, she is playing happily with her sister.

She woke up laughing this morning and I can tell you that the sound of her laughter is perhaps the most beautiful sound I have ever heard.

I know many families like mine. Families who have spent years of their lives watching their children fight cancer. I know that some of these families would love to be where we are right now. They would give anything to have another chance to cure their child of cancer, to hold their baby in their arms, or to have time to watch their little one play and for these reasons, we are blessed.

And so we will continue to put one foot in front of the other and to live life. Right now life includes a significant amount of screaming and shouts of "no Mae!" and "it's mine, Mae!!!" from feisty Phoebe. Yesterday she put her big sister in a time out. She shouted - "time out!" while clapping her hands together quite aggressively for more effect. She is certainly feisty and two. Thankfully, Mae is very easy going and understanding and if you ask her she will tell you that it is "Phoebe's medicines that make her mad sometimes".

About these medicines ... we are beginning to wean Phoebe from her steroids and yesterday she had another dose of chemotherapy. One of the chemotherapies she receives has been held because her counts are still recovering. She is neutropenic right now, or at least she was on Friday - this means she has very little white blood cells and cannot fight infection. It also means that we need to be very careful.

And so we will keep Phoebe close, and continue to wait. Wait for news from Philadelphia, for news of next steps, news of contingency plans. For news of a cure for Phoebe Rose wherever it may be.

As I was about to post this I heard Mae singing. In her sweet voice she sang a song that has been popular in this house this weekend ... "Let it be, let it be, let it be, oh let it be ... there will be an answer, let it be". I think I will follow her wise advice.

"Shine on until tomorrow, let it be."

Our little friend Matthew is working very hard to recover and is in the ICU at St.Jude. He is on life support and needs prayers and love. I am sending him all the love I have and prayers full of hope.

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