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, June 20, 2011


We have had a busy weekend.  Phoebe developed some odd looking elevated bruises on her scalp this week.  There are many explanations for these bruises.  She fell and bumped her head, which she did, she has very low platelets and so is at risk for bruising, also true, and then the one explanation that no one wants to hear is that it is related to the Leukemia.  In very rare cases, Leukemia can manifest in the skin.  Phoebe has never had this condition, but because our doctors always have Cancer on their minds, something like these bruises are taken very seriously.  The plan is for Phoebe to be seen by the Dermatology team and they will decide if they need to biopsy one of the bruises and test it for Leukemia. What makes this situation frustrating is that opinions differ greatly from one doctor to another.  On Friday, our doctors were watching the bruises, talking about how well Phoebe looks and contemplating a biopsy, on the weekend, although the bruises started to look better and Phoebe was still looking good, those doctors were sounding off alarm bells. 

We are frightened, terrified actually, but still hoping for the best.  Afterall there are many other reasonable explanations for this.  And Phoebe looks good.  She is smiling and laughing and on Sunday she learned how to go from sitting up to her tummy without falling. 

To be on the safe side, our doctors have stopped Cyclosporine, the drug that prevents Graft-Versus-Host-Disease, they say that in case something is up and brewing in Phoebe's body, they want the graft to take over. They want Phoebe's new cells and her new immune system to fight hard against any left over Leukemia. 

Just in case that wasn't enough action for one weekend, late on Sunday evening, just as Phoebe was settling down to sleep,  I looked into her crib and noticed a very large pool of blood.  Her PICC line was lying beside her on the sheets.  She had somehow managed to pull it out.  When she was in the ICU, the nurses used to call her Houdini and now she is living up to her nickname. We quickly applied pressure to the wound, and it eventually stopped bleeding.  Thankfully I was awake and in the room when it happened because it could have been disasterous - an open wound and a baby with few platelets is not a good combination. 

I have often joked that Phoebe wants to meet as many doctors from Sick Kids as possible.  We have seen doctors from many different departments and she greets them all the same way, with a big smile and a bop of her head.  We are preparing for another busy day, and I am hoping and praying for good news, and to be turning back onto a straighter and smoother road, with fewer doctors.  The road to home.

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