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.

Saturday, July 25, 2015

Phoebe has been busy. Last week, she had a repeat bone marrow aspiration, lumbar puncture and CT scan. The results came in one by one ... her spinal fluid is clear of leukemia, her lungs are much improved ... her bone marrow is still overwhelmed with disease. There is less leukemia in the bone marrow than on the last test, so we are making progress, but it's still very much there.

This is after four weeks with a very low dose chemo that is not expected to cure - we are not sure if we should feel happy that it has not raged out of control or disappointed that it is still there. I feel both and more - happy and relieved that for whatever reason, this terribly aggressive disease is "controlled" and isolated to Phoebe's bone marrow, but so disappointed that it is still there, and terrified by what all of this means. 

We have tried so many things and right now there is no answer, no drug and no treatment that can fix this. Actually, there truly has never been an answer, a drug or a treatment to fix this. We will keep trying, as long as Phoebe is well, and we believe that one day, we will find what we have been looking for, we have to, but we can't help but wish there were more. More answers, more research, more options, more attention paid to cancers that affect children. 

Right now, Phoebe wakes up each morning smiling (or yelling at us for breakfast), so we are okay. I just can't think about what all of this disease means, so I focus on the good things.

Phoebe is now eating on her own - she has been without her feeding tube for 2 weeks and although she hasn't gained any weight, she hasn't lost any either. 

The fungal infection continues to improve. Phoebe's skin is still marked where the lesions were once black and awful, but compared to 3 months ago, the progress is amazing. 

Phoebe continues to blaze her own trail and in less than two weeks she will turn five years old. Five amazing and miraculous years old. 

We are all together - or we will be again soon. Jon has been home for the past two weeks and returns to Memphis tomorrow. We have been away from Ottawa and our little house for a year and life outside of cancer and Memphis needed some attention. We can't wait to see him and I am so thankful to be able to travel this road together. 

We are not sure of what happens next and right now, we are just thankful that Phoebe is "well" despite the many reasons she has not to be. Our doctor is looking into a few things that we haven't tried yet, and we are hopeful she will find something that will help.  It just takes one. 

Please keep Phoebe in your thoughts and prayers. 

We believe. 

This photo is of Mae and Phoebe walking the famous Memphis Peabody Ducks up to their rooftop home in honor and memory of Matthew Robert Pierce. Matthew's sisters were honorary duck masters and they invited Mae and Phoebe to join them. It was a beautiful afternoon spent with amazing people in honor of a little boy who has changed and touched many lives. We miss you Matthew.

This photo is a save the date postcard for the childhood cancer awareness event on Parliament Hill. There is strength in numbers. Please pass it on ... 

Monday, July 6, 2015

We are still here ... 

It has been a while since I have written - there is so much to say and also so little; if that makes sense. Phoebe has been doing well - she is energetic, joyful, happy, and so feisty. She is getting stronger, gaining weight and doctors are once again cautiously optimistic. We are hopeful. Always hopeful. Phoebe has exceeded all expectations. That she is here is a miracle. 

There is not a lot to update. We are on the same path of weekly granulocytes, very low dose chemo, and antifungals. Phoebe still needs blood and platelet transfusions (thank-you blood donors), but sometimes they seem not as frequent. We aren't making any changes and right now, there are no plans for any immediate next steps. We are rechecking Phoebe's bone marrow and lungs on the 16th and hopeful for progress. 

Behind all of this good news with few updates is leukemia, fungus, and fear. We are living with leukemia. It is amazing to me how Phoebe can thrive in the face of this cancer, how there can be something so terrible and dangerous inside of her, yet she tolerates it. She lives with it. More than that, every day that she gets up and plays her heart out, she defeats it. 

For us, despite how "well" Phoebe seems, the fact that she has a thought to be incurable cancer on top of an often deadly fungal infection - it is all we think about. We look for symptoms, we worry, we wonder. At times it is overwhelming. There is so much to write and also so little. 

Phoebe leads the way. She really does. When she is up, we are too. When she is down, we are broken. Right now she is well and up and feisty and we are all happy. Mae especially - her joy is a beautiful thing. We are following advice of brave friends and seizing the day ... or we are trying to. We are cautiously seizing the day, avoiding crowds and germs with a mask on Phoebe. It is the best we can do. When not at the hospital, we try to explore. We have visited Nashville and Little Rock and even escaped to the Gulf Shores - which is amazingly close to Memphis. Mae swam in the ocean, we saw dolphins, Phoebe started a shell collection and we all felt the sand in between our toes. We tried to just be despite the weight of cancer. We imagined a day when Phoebe can splash in the ocean. We breathed in and out and we celebrated hope. Anything is possible. 

Go Phoebe go. 

In other news, a date is set for the 3rd annual Childhood Cancer Awareness Event. It will be on the 13th of September, at 6pm, in front of the Peace Tower. If you are in Ottawa, please consider attending and helping us shine a light on this devastating disease and the need for more research and better treatments and cures. Cancer is the leading cause of disease related death for Canadian kids and this is not okay. For more information and updates please visit www.facebook.com/gogoldcanada or follow us on Twitter @goldonthehill

There is strength in numbers, please share!