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, June 17, 2015

Phoebe's bone marrow results are the same. The level of disease is very high, filling up most of the space in her bone marrow. Her chimerism is now just 7% donor cells, but miraculously, there are no signs of leukemia in her blood, so I guess although things are bad, they are not any worse. 

It is still just hard to believe. It is hard to believe that Phoebe is so sick and that we have tried every medicine available to treat leukemia and yet this relentless monster just won't stop. We have been running, desperate for anything that offered hope, for almost five years - and now here we are at a bit of a standstill because, right now, there is nothing left to try. 

We are taking things one day at a time and apart from the addition of one new/old drug that will hopefully help reduce the leukemia burden, we are not making any changes. We are continuing to treat the fungal infection with my weekly granulocyte infusions (Phoebe is not making her own cells) and we are doing what we can to keep the leukemia from raging out of control. So far, it appears to be isolated to Phoebe's bone marrow and we hope to never see it spill to her blood. Even if we wanted to, we are not able to give Phoebe intense chemo due to the infection and the fact that her little body needs rest. It would make her sick and so this break is a blessing in disguise as these weeks and now months without intense chemo have allowed Phoebe to heal and thrive. We will recheck the bone marrow in two weeks and although we are always hopeful - Phoebe and Mae help us believe that anything is possible - we are also terribly worried and broken. We are desperate for some good news. 

Phoebe, on the other hand, is "fine". She doesn't know that she is so sick and if you ask her, she will say that her spots are healing, that she can jump high and ride her bike, that she can do everything without any help, and that when her hair grows back (she currently has a beautiful dusting of blond fuzz) she wants a braid just like Mae. She often sings at the very top of her voice to her favourite songs even if she doesn't know the words, and she is a joy. She really has come so far. 

We try to shelter Phoebe and Mae from the stress and worry that we feel each day, but they are both incredibly smart and they often surprise us with their insight and maturity. Mae is very sensitive and kind and she knows and has seen too much. She shares our worries - having a sister with cancer is a weight that no 6 year old should ever have to bear and I wish I could somehow protect her from all of this. In many ways, it is Phoebe who protects her as she asks her to play, makes her laugh, and some of the worries melt away. Phoebe regularly "helps" the nurses with her central line care and blood work - making sure to tell them how she likes things just so. Today she noticed that her nose was bleeding and immediately said - "it looks like I'll need platelets today". Some four year olds are learning letters and numbers, Phoebe knows this and has moved on to the blood system. 

We are holding on to hope and we are grateful for the many, many good days that we have. The light that Mae and Phoebe bring to our days is a beautiful thing and it truly keeps us afloat. 

We are also grateful for the support and love that we continue to receive from Ottawa. A big and special thank-you to John Gomes and those involved in the Fifty-seven Ride - they are riding their bikes from Ottawa to Toronto, raising awareness for childhood cancers all in honour and support of Phoebe. We are amazed, thankful and blessed. 

There is a fundraising BBQ and kick off party with live music, games, and prizes  this Sunday from 10am to 2pm at Stanley Park in New Edinburgh. All proceeds go to the 57 Ride for Phoebe Rose. For more information about this and the 57Ride, please visit : www.57ride.ca 

Thursday, June 4, 2015


Phoebe appears to be feeling great. Her doctors and nurses comment on how far she has come, how happy she is, how great she looks. She is gaining weight, eating more by mouth, the fungal lesions are still improving, she has more energy, and each day seems to bring progress. 

I wish so much that Phoebe's test results matched her beautiful and healthy spirit, but they don't. 

Phoebe's bone marrow results are confusing. The MRD test found just 4% leukemia cells. This is more than the .08% from three weeks ago, but still low and manageable. We heard this result first and thought - we can handle 4% - we are still okay. Results of the chimerism test came next and reported 90% Phoebe cells and just 10% donor cells. All of Phoebe's cells express the MLL gene and are cancerous, so this is not good, but it is also hard to be believe considering the other result and Phoebe. These results just don't match Phoebe and I keep expecting someone to call and tell us that they made a mistake. On Friday, when Phoebe's doctor called with the chimerism results she expressed concern that the leukemia would soon break into Phoebe's blood stream - making things harder to control. There are no signs of this, rather Phoebe's labs today show low but stable counts and even some improvement. Phoebe herself appears to be "well" and asymptomatic, but we still worry. We worry all the time and now we worry even more. 

We are dealing with two very aggressive and life threatening diseases. The fungal infection and refractory infant leukemia - both have very limited, if any, effective treatment options and both take far more than are cured. Phoebe is here because she has overcome incredible odds. For the fungal infection, we are continuing with the weekly granulocytes and antifungal drugs and hoping that this is enough. Phoebe needs her own cells to recover but if she really does have only 10% donor cells, I don't know if this is possible. As for leukemia - we have tried almost everything we can try. There is one drug that Phoebe hasn't received and it is low dose and well tolerated, so we are going for it. It is used in the maintenance cycle of leukemia treatment and we are hoping that it can calm the storm and keep things under control. The transplant trial is still on hold and not an option right now, but we will never give up hope that one day, we will get there. 

We will continue to support Phoebe's healing with a good and healthy diet and all the love and hope in the world and we believe that this makes a difference, but the key to all of this is Phoebe. Phoebe is here and more than this, she appears to be thriving in the face of leukemia and this terrible infection. This is what keeps us from completely breaking down and gives us the strength we need to face this day after day. 

We are rechecking Phoebe's bone marrow in a week and a half and hopefully these results will bring clarity and good news. In the meantime, we will continue to take each day as it comes, always hopeful and grateful that the good days far outnumber the bad. 

Go Phoebe go.