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.

Friday, January 23, 2015

We need a cure

Phoebe's bone marrow results are not good. 83% of the cells in her bone marrow are leukemia. We are still waiting for final results, but under the microscope it appears that once again, there is both AML and ALL leukemia. 

There are no words to describe how this feels and I am tired of writing that we are devastated and heartbroken - we are that and so much more. At times it feels like I can't breathe. We ache for Phoebe - we ache for her to be well again, for this to be okay, for answers, for solutions, for the right words to explain this to 6 year old Mae who also aches for Phoebe. 

Unfortunately, there are no new drugs and no new treatments for pediatric AML, and we have already tried many things. Ours is a very harsh reality - to know that our lack of options is due to the lack of funding and attention paid to finding a cure for pediatric cancer is what is truly devastating. I will never understand why childhood cancer research is not a priority. I will never understand why children are left to fight cancer with outdated chemotherapies. I will never understand why our government dedicates just 3% of all research funding to childhood cancer initiatives. I will never understand why profit is placed higher than the life of a child. If I could, I would change places with Phoebe in a second.

The wonderful doctors at St.Jude are once again putting their heads together for Phoebe. There is a medicine that we can try that we hope will help to calm this storm. We have tried this drug once before with good results and it is ironically one of the only two new drugs that have been approved for use in pediatric cancer in the past 30 years. I remember being excited about it three years ago. Three years later, I wish there were more. There should be more. Phoebe's disease responded very well to this drug when she received it many years ago and we are holding on to the hope that it will again. 

Our plan for now is to try to enjoy the weekend. Phoebe would like to ride the Cinderella carriage in downtown Memphis and so that is what we will do. Moving forward, we will continue to support, love and hold Phoebe tight through this. 

Despite all of this, Phoebe is okay. We were excited to see good blood work and 99-100% donor peripheral blood chimerisms this week - Phoebe has also had more energy and is happy so this news was not at all what we were expecting. 

On Monday, Phoebe will start chemo again and we will repeat the bone marrow tests later in the week to monitor her progress. We need good news

Please keep Phoebe in your thoughts and prayers. Please remember that kids get cancer too. 

We need a cure. 


  1. Praying that the drug they will try will work again for your sweet girl! So glad that St. Jude's is working so hard and I pray for all of them!

    Love the pictures of the girls.

  2. Praying without ceasing that your sweet girl will respond to this "new" drug, praying always for Phoebe's cure, and praying for Mae & you, her beautiful family. Sending each of you blessings, love & hugs from the Henry family <3

  3. For the second time in a week you have brought me to tears. I cannot imagine how many you have shed. I wish I could take away your pain...yours, Phoebe's, Mae's. The "childhood cancer roller coaster" is the worst of rides for parents. Please know our prayers surround you.

  4. Praying, hoping and BELIEVING for Phoebe and your family! Full steam ahead Phoebe! Much love to you all.

  5. Praying, hoping and BELIEVING for Phoebe and your family! Full steam ahead Phoebe! Much love to you all.

  6. Praying for you and your family Jenny. We are in this with you.

  7. Hello!

    I have a quick question for you, could you email me when you have a chance? Thanks! –Cameron