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.

Monday, February 2, 2015

A step forward

Slow and steady.

Phoebe's follow up bone marrow aspiration that was done today showed a decrease in leukemia. The amount of disease has dropped from 83% to about 55%. Phoebe's spinal fluid is clear of disease which is a huge relief.

Phoebe's doctor is happy with the results and has decided to continue with this chemo. The amount of chemo that Phoebe received last week was very small, just two reduced doses with the goal being to see if there was any response or excessive toxicity before continuing. Thankfully, Phoebe's leukemia responded and although we saw a jump in liver function tests directly following chemo, those numbers are now almost completely normal for the first time in months. We can take another step forward and hope for more response. What is also great is that Phoebe has experienced very few side effects. Her blood counts dropped and she may receive another granulocyte infusion this week so we can stay ahead of any infections, but for the most part she has been happy and joyful Phoebe. She has been up and playing with Mae, laughing, and even doing some dancing and jumping. Mae is so happy to have her friend back and would play all day with Phoebe if she could. Watching them play is my favourite thing. 

"Phoebe, will you play with me when we get home? I promise I'll make it all about monkeys and you can be the mom". Mae

Despite the chaos that has a tendency to fill our days, Mae is thriving. She is learning and reading and I am thankful for the opportunity to teach her (and to finally use my teaching degree). Home/hospital schooling is a lot more challenging than I thought it would be and I am really proud of what we have all done together. Jon is often the math teacher and not only does he have Mae excited about numbers while turning her into a math whiz, he has given her confidence. Beautiful confidence. 

I am writing this from our little room in the medicine room at St.Jude. Phoebe is receiving chemo, she is hooked up to a heart monitor as this drug is known to lower heart rate, but she is taking it in stride and listening to music. Mae is hanging out and so far all is good. We expect to be here until close to midnight, but after that we will go "home" and sleep in our own beds. Another long day, but a day that we are thankful for. It really is the little things. 

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle". Albert Einstein 


Thank-you all for keeping Phoebe in your thoughts and prayers. We read each message, comment, email and are so grateful for the support and love. You help us through. 


  1. Thanks for the update! So happy to hear good news. Just love that Phoebe is up to playing with her sis!

    Prayers as always that the miracle is around the corner.

  2. Great news... love from the Caribbean.

  3. Wonderful news! Still praying God's healing touch on sweet Phoebe, believing in her cure, and praying for Mae & you as well. Sending blessings, love & hugs from the Henrys in Novato CA.

  4. Hello from Michigan! I came across your story through facebook... I'm so glad to hear that Phoebe is doing well! We are praying for a cure. Mae is such a kind person - she sounds like the best sister in the world. God bless your family - we hope that your little one continues to improve!

  5. Keeping your family in my healing thoughts to the universe.

  6. Fantastic news. Beautiful sister time. As you say, each day is one to be thankful for. Sending you much love and strength. X

  7. I am over joyed to read this post! I am smoking through tears and waving my banner, cheering for Phoebe! My family will continue to pray and put out positive vibes of healing and health! Stay strong!!