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.

Wednesday, October 28, 2015

Phoebe was admitted to the hospital on Monday because her oxygen saturation was low. Her hemoglobin was also critically low and she was just not doing well. They wanted to keep a close eye on her and get her ready for her tests on Tuesday. The plan was to do a CT scan of Phoebe's lungs and sinuses, under sedation like we always do because Phoebe is afraid of the CT machine and panics when she goes near it, and a bone marrow aspirate. 

Bright and early Tuesday morning, Phoebe got over her fear of the CT machine and went for her CT scan without sedation. She protested a lot, but her Daddy was able to convince her to try so she could avoid the extra sedation given she was already having issues with her breathing. She told him over and over "I'm not going to cooperate, I'm not going to stop moving, I won't stop talking", but she eventually listened to the technician and did everything she was supposed to - even the breath holds! This news shocked the many doctors, nurses and child life who have been trying to convince Phoebe to do a CT without sedation for amost a year.

Because of all the issues Phoebe has been having with her breathing, the coughing, and her oxygen saturation levels, we have been very worried about these tests and what they would show.

The CT of Phoebe's lungs is the same - nothing new, nothing worse, nothing that explains Phoebe's need for oxygen.

The CT of Phoebe's sinuses showed a mass, or drainage, or fungus, so ENT was called and they wanted to look in Phoebe's nose for fungus with a scope ... again. We didn't want to traumatize Phoebe by looking up her nose with a camera and by this point, Phoebe still had to have her bone marrow aspirate under sedation, so they agreed to wait and look while she was asleep. The ENT doctors come from another children's hospital in Memphis so that they waited and worked with Phoebe's schedule is really great. This great timing is also thanks to Jon who asked that the CT scans were read before moving forward with sedation just in case something like this came up. As it often does with Phoebe. Thankfully it worked out as it did because they found and pulled out two hard clots, one looked impossibly huge and was wrapped through the hole that Phoebe has in her septum and lodged in the back of her throat. The ENT doctor said it wouldn't have come out any other way but surgically. Never a dull moment, but this explains the cough Phoebe has had all week and why she hasn't been able to speak very well. And it is a huge relief that it's not fungus. The doctor said the tissue looked beautiful, which we kind of already knew because Phoebe had exploratory sinus surgery last month, but anything is possible.

Phoebe slept the rest of the day following this excitement and although she still needed some blow by oxygen, her breathing was back to normal. She also stopped having fevers and so she was discharged this morning and we had the rest of the day at the target house to wait for a phone call with the rest of the results. 

The bone marrow results are better with the level of disease down to 50% from 75. We are relieved that things are moving in the right direction after just two doses of chemo and we will meet with Phoebe's doctor on Friday to talk about next steps - if Phoebe is able and well enough to continue this treatment. 

Somewhere in all of this, Phoebe also tested positive for adenovirus - it is mild and it doesn't look like it will require treatment which is good as the drugs used are hard on the kidneys, but this could also explain some of the symptoms Phoebe has been having. There has been a lot going on, but all things are improving and we are hopeful. Always hopeful, and grateful for better news.

The best part of our day was driving home and listening to Phoebe ask for a snack and sing along to the radio again. She has been so quiet lately and it's so nice to hear her voice. She also started telling us exactly how she feels and getting mad that she needs a bath ... it's like music to my ears, her little feisty voice. 

Thank-you all for keeping Phoebe in your thoughts and prayers. 


  1. Phoebe is keeping me (and many others I am sure) in awe.

  2. Wonderful news :) You rock Phoebe Rose!!!!! :D

  3. Great, great news! Phoebe is AMAZING!! Yes, we are all in awe of the fight this little girl has. Prayers and hugs to Sweet Phoebe and her sweet big sissy, and, of course, to the best mommy and daddy!