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 

Saturday, December 21, 2013

'Tis the Season

Phoebe is doing well and on her last visit to CHEO, all looked good. Her blood work is back to her normal, we lived through another five days of steroids, and if all goes well, we will not return to the hospital until after Christmas.

In the meantime, Phoebe has been loving life. She has checked a few more things off of her list of firsts and we are all just relieved and happy to be cruising towards 2014 without the chaos and heart ache that filled our days last year.

The events of this time last year and the second relapse that seemed to come out of nowhere, are still very close in our thoughts. It is like our family experienced a trauma, and although most of us have no physical scars or obvious wounds, we hurt and we need to heal. It is stressful and overwhelming and difficult to think about how quickly our lives were turned upside down and the likelihood that it could happen again. This is our year, our year to heal and to make holiday memories that don't include the hospital; memories that aren't grounded in fear.

Lately Mae has been asking a lot of questions about Phoebe's illness and talking about the things that she remembers. It is enough to break my heart over and over again. She mentions Phoebe being really sick. She talks about spending time in the hospital. She asks if there will be a time when Phoebe won't have to have pokes or visits to the hospital. She cries and tells me that she doesn't want anything bad to happen. It is heart breaking, there is no other way to describe it, and I wish so much that she didn't have these worries or fears. We may be on a smooth path and doing well, but the fears and memories of what was and what could have been never really go away. For any of us.

The many families we have met throughout this journey, families who are spending their Christmas without precious loved ones, or spending the holidays in the hospital, are never far from my thoughts. We are thankful and blessed to be together and here and to do simple things like watch Mae and Phoebe decorate the tree for the first time. This is a memory that I will always hold close. Phoebe telling Mae very matter-of-fact that it is "her first tree, you know" and Mae telling her about the other trees we have had. Jon lifting them both up to put the angel on top. I never really realized how truly special moments like these are until we didn't have them. Each moment is a gift. 

In other Phoebe news, she is still in love with Santa and she has revised and asked that we rewrite her letter to Santa almost daily. The most recent revision was done because "my daddy needs slippers. Me and he really needs them. Write it to Santa". Always thinking of others, that's our girl. 

We are so excited to watch Mae and Phoebe experience more firsts together, as it should be, this Christmas.

Merry Christmas! 

On New Year's Day, Phoebe's crazy and wonderful Dad will be jumping in to the frozen Ottawa River to raise awareness for childhood cancer. He is doing this in honour of Phoebe and the many friends we have met on this journey and he is also raising money for pediatric oncology programs and research in Canada via the Sears Foundation. Jumping into the frozen river in minus many degrees below zero weather seems a bit nuts to me, but when I asked Jon if he was sure he wanted to do this he said - "it is nothing compared to what Phoebe goes through". And then he added "I'm going to do it in my underwear". Go Jon go.

If you would like to learn more, come out to cheer, or donate, please visit this link.

Sunday, December 1, 2013

Day + 730

Today marks 730 days of new life, new cells, a second chance, renewed hope and growth.

Phoebe received her second life saving transplant two years ago today. This second year has not been without bumps. In fact, the word bump does not even come close to describe the chaos and heartache that rocked our world this past year. We trudged and trudged through relapse, radiation, and more chemotherapy. We moved away from home and outside of Canada once again with hope of a cure. We worried about failing kidneys, side effects, blood infections, and more cancer. We wondered whether or not we were doing the right thing. We struggled with the reality of decisions that were made in desperation. We said good bye to any real hope of Phoebe ever having biological children. We struggled with decisions to give more chemo and the need to resort to radiation. We mourned the loss of many friends. 

We gave thanks for each day and we celebrated life. Pure and simple. Second chances became third chances and Phoebe once again taught us the power of hope and love and strength. 

We held on. Breathless and fearful, but we held on. 

The road became easier, gentler, and with each good test result, more hopeful.

I still wonder if a day will come when I will no longer feel Phoebe's tummy while she sleeps, her lymph nodes, listen to her breathe, and search for clues and answers to calm my worried mind. I do this each night in silent longing for everything I touch to be "normal" and because I just can't help myself. After all, a massive leukemic mass grew in Phoebe's belly, crushing her kidneys, yet remained undetected until it was nearly too late. This will never happen again. 

Sometimes I feel like I am holding my breath, rushing through the days so that we can get closer to solid ground. Then something as simple as watching Phoebe and Mae play stops me in my tracks.  

They play and laugh and fight and love each other and I realize that we are as normal as can be. Or as normal as possible under the circumstances, with trips to CHEO, St.Jude and biweekly chemo thrown into the mix.

We had some normal today and a beautiful memory. 

Today Phoebe sat on Santa's knee for the very first time. With Mae by her side she marched up to him and boldly told him that she would like him to bring her three dollies. To this he said, "3 dollars? Would you like to ride the subway?"

A funny Santa made my day. That and the smiles on Mae and Phoebe's faces. And 730 days of life. 

And this, the cutest Rudolf ever.