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, November 26, 2014

Never a dull moment.

A few days ago, Phoebe sneezed. It was a forceful sneeze, a big sneeze, a sneeze that sent us to the hospital with a tissue filled with all kinds of stuff. There was a chunk of blackish "stuff" in amongst it all that was strange and concerning. So much so that the infectious disease doctors eagerly accepted our tissue of stuff and sent it to the lab for testing.

The doctors have been trying to get a piece of the fungus that has taken up residence in Phoebe's brain and lungs for months. They looked at lung surgery, but thankfully deemed it too invasive. At one point they were ready to biopsy a suspicious lymph node but it has since completely healed. The neurologist wanted a piece of Phoebe's brain lesion had she not shown signs of progress. They had pretty much given up on this quest for tissue, happy to see Phoebe improving, until Phoebe sneezed and out came a suspicious chunk of stuff. 

The lab results show evidence of mold and this prompted a CT scan of Phoebe's sinuses and lungs this morning. 

The lungs look much improved! This is very good news. At one point Phoebe had four large lesions in her lungs. Today, one is so small it is almost undetectable, two are very small, and the largest has decreased in size. 

Phoebe does, however, have a hole in her septum that is visible on the CT. This is the first that we have seen of this as there was no evidence of sinus disease on previous scans. The doctors think that fungus has eroded the cartilage between Phoebe's nostrils and they are worried that there may be more damage. Fungus is invasive and relentless, especially in a person with no immune system. Phoebe's immune system is thankfully recovering but she went many months without. I just can't bring myself to think of invasive fungus and the damage that it can cause. 

On Friday, Phoebe will go to the operating room so that the doctors can biopsy the tissue that is surrounding the hole. Once there, they will remove any other fungus or dead tissue and assess the damage. We hope that because Phoebe's counts are good, that this is a simple biopsy and that any fungus is controlled and limited to the area seen on the CT. We hope they find healthy tissue and signs of a recovering Phoebe.

We hope. We hope. We hope. 

Despite all of this, Phoebe seems okay. She had a long day at the hospital today, but when she is home she is happy. She has taken a few steps on her own, her voice is finally back, she wants to play, and she proudly helped make her big sister a birthday cake yesterday. She also happily played with Mae and her new toys. Tonight she wrote a letter to Santa to ask for a "small trampoline, a monkey, and a purple bow and arrow - oh, and a stroller for my monkey". She obviously has big plans that don't involve fungus and cancer, so we will follow her strong lead. 


  1. Please know that people you have never met hold Phoebe and her family in their hearts with great love. We hope along with you that all will be well with your sweet girl. And we send our love across the miles to strengthen you all.

  2. I am sure people tell you this all the time, but Phoebe's beauty literally brings tears to my eyes every time I see a photo of her. She is beautiful. Always in my thoughts and prayers. Courtney (Friend of Dev Jude - who's shared your story)

  3. Oh Miss Phoebe u are a stong cookie, u will rise above this....love, hugs and kisses
    Love Samantha