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, 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! 

1 comment:

  1. Keep on going, Phoebe!

    Great picture of the girls!!