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, December 30, 2013

So long 2013

So long 2013. 

As far as years go, or at least our years since Cancer, this one has been okay. It was spent watching Phoebe fight cancer, but our good news far outweighed the bad and we glimpsed hope and promise on the horizon. Promise of a future without cancer. 

Perhaps 2014 will be our year. 

2013 began in the hospital with a large leukemic mass that filled Phoebe's abdomen and pelvis. The mass didn't grow in 2013, only shrunk, and the superstitious person in me, says that this is a good sign. 

In 2013, our family spent 2 and a half months in Memphis TN at St.Jude Children's Research Hospital. We hoped for a clinical trial but were both relieved and disappointed to learn that despite still having small amounts of disease, Phoebe did not have enough to be eligible for any experimental treatment. We were left with the same drugs and the same treatment that had already failed us twice. Cancer often leaves us wishing for strange things like more cancer to treat the cancer and always frustrated with the lack of available options. 

Phoebe underwent ten days of focal radiation, she had her 9th double lumen central line inserted with expectation of a third transplant, only to have it removed six months later and replaced with a port. 

Despite a devastating relapse and some very dark days where it seemed Phoebe's belly and mass grew before our very eyes, chemotherapy and what can only be explained as a functioning and powerful immune system that still recognized the cancerous cells as foreign, caused the mass to shrink completely, the disease to disappear from bone marrow and for Phoebe to see complete remission once again. Much to the surprise and amazement of her doctors. 

In 2013, against all odds, Phoebe turned three. 

She learned to ride a tricycle, to jump, she had her hair cut for the first time. Her dark curly locks fell out with treatment and were replaced with very blond, a bit wild, and mostly straight hair. 

The Peace Tower was lit gold for Childhood Cancer awareness. This was the work of the childhood cancer community and although the event was well attended and covered by most local and some national media outlets, not a single politician came out to show support, leaving much work to do in 2014 to make sure that not only do they show up, but they too wear gold, listen and take action. 

Mae turned 5; she had her very first birthday party with friends. 

Phoebe sat on Santa's knee, decorated the Christmas tree with Mae and together they celebrated a first Christmas at home. 

In 2013, we were once again left to search for options to treat this leukemia that has been plaguing us for over three years. We were reminded that we are at the mercy of drug companies and governments and the paltry 3.13% of federal funding that is directed by the Canadian government towards pediatric cancer research is not even close to being enough to attempt to cure, or even treat our child. Instead, we were left to search elsewhere and to travel to St.Jude for treatment.

In 2013 we were supported, strengthened and loved by incredible friends and family. Phoebe was cared for by truly wonderful doctors, nurses and nurse practitioners, many of whom advocated on her behalf for treatment and continue to do so. 

In 2013, we lost too many friends to cancer and to the devastating side effects of its treatment. 

2014 is on the horizon. A new year, a fresh start, a chance to do good, to make a difference, to resolve to change bad habits or develop good ones. A chance to be happy and healthy. 

I need 2014 to be our year without chaos and cancer and chemotherapy. We have had news of a cancer diagnosis or a cancer relapse every year for the past three and we need a year (or many) to catch our breath. A year to put our broken pieces back together and to repare the damage that life with cancer has caused; not just to our hearts and souls, but to our lives, our emotional and financial stability, our futures. I hope to be able to squeeze some work next year, whatever that may be, into Phoebe's schedule and to help ease some of the financial stress that has been caused by this cancer (I would love to do some more writing). 

I hope we can continue to move forward and away from reminders of the wreckage that cancer has caused our family. I wish for the good news of 2013 to carry through to the new year and the future. 

More than anything though, I wish for Phoebe to start school, to make friends, to grow and to thrive.

I wish to watch her grow up and run to catch up with her big sister. 

I wish you all a happy and healthy new year. 

A few photos of our 2013 ...

Busting out of CHEO in January 

Dancing on the banks of the mighty Mississippi

Getting ready for another round of radiation at St.Jude 

A break and a first time for little feet in the ocean 

Home and bike riding 


Light the Hill gold 

Cutest Zebra ever


First Christmas at home 

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