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, November 23, 2016

Vote for Phoebe Rose Rocks

This blog, Phoebe's blog as we like to call it, has been nominated in Healthline's best health blog of 2016 contest! We are honoured to be recognized in this way and see it as a great way to raise childhood cancer awareness, forward the Phoebe Rose Rocks Foundation, share Phoebe's story and continue her legacy of hope.

You can vote by clicking here  and searching Phoebe Rose Rocks. You will need to enter your email address and if you are on a mobile device, scroll up to check the "I'm not a robot" box. Once you assure the folks at Healthline that you are not a robot, they will send a confirmation link to your email. Click the link in your email to confirm and you are done! You can vote once every 24 hours until December 12th. First prize is $1000!

I started writing or "blogging" almost 6 years ago as a way to update friends and family on Phoebe's progress. We were about to leave for Toronto and Phoebe's first transplant and I had so many thoughts that I wanted to share. I was also sure that this transplant would be Phoebe's cure and I wanted this huge event in our lives documented. I imagined Mae and Phoebe, who were 1 and 2 years old at the time, reading it when they were older, but then transplant failed and our fight began in ways that we hadn't experienced before. We became advocates, Jon and I who are both very shy, found our voices in all of this, we fought for treatment, we struggled to be heard, we pleaded for a chance, we picked up our lives and moved, we spoke up for Phoebe and for others. Our eyes were opened to the lack of funding and new treatments for childhood cancers and we started shouting from the rooftops. 

We would have done anything and gone anywhere if it promised to help keep Phoebe with us. 

This blog became a platform that allowed us to share what life is like for a family like ours and so we shared everything. Our hearts and souls. Our experiences as parents of a child with cancer, first with a terrible prognosis, and then with no cure. Our experiences with the health care system. Our fears, triumphs, joy, sadness, Mae and Phoebe's milestones, and now our grief - all make up the posts on this page. 

Although it is incredibly difficult at times, it has been therapeutic for me to share and to write. I like to think I have honoured Phoebe's life and the beautiful way in which she lived in a small way by writing about her. I wish I wrote more.

At times I know it's hard to read and maybe I share too much, but now that Phoebe is gone, I am thankful to have it. I am thankful Mae will have this story to read when she is grown up and has questions about her little sister, Phoebe. I am grateful when I hear how Phoebe's life has touched and inspired others. I am grateful to hear her name. 

Please vote for us. Healthline is a social media platform that reaches millions of people each day - help us reach these people and raise childhood cancer awareness. 





Monday, November 7, 2016

One year

On Friday, we will have spent an entire year without our precious Phoebe. A year. I'm still not sure how this is possible. I still think I must be having a nightmare. I still expect to see her, hug her, hear her voice - I still look for her everywhere.

Yet, we get up everyday and greet the day. We take good care of Mae and love her with everything we have. We honour Phoebe's life and legacy with everything we do. We put one foot in front of the other despite how painful and exhausting this can be. We look for the joy, as Phoebe taught us. We have come to understand that our hearts will never fully heal, but in those places where we are broken, I imagine that the great big love we have for Phoebe is building pathways around this pain, helping us to breathe in and out, and find our way. I know that Phoebe would want exactly this. 

As time passes, the reality that Phoebe is not here has become painfully clear and because of this, at times, the grieving process is so much harder. The reality that, in this lifetime, we will never see Phoebe again, never hear her sweet voice in the present, hold her, kiss her, hug her, listen to her wise stories, watch her grow, and hear her beautiful laugh - is unbelievably hard to accept. How is this possible? I can't accept it. I will live with this reality, but I will never accept that I don't get to watch Phoebe grow up with all of the beauty, chaos, and worry that would surely come with this. I would do anything to be given the gift of seeing the beautiful person Phoebe would become, year after year. I would do anything to argue with my teenage Phoebe. I would do anything for just one more day. 

This year has allowed us a lot of time to think. I have learned that grief is not a neat little package of stages that we work through to a conclusion of acceptance and then move on. I have learned that losing a child is not something that can be overcome, rather it is a weight that can only be carried. It is a lifetime of missed moments and within those moments; heartache. I imagine and I hope that I will get better at carrying this weight, but I know that, for as long as I live, every occasion or moment that Phoebe is missing from, everything, be it Christmas, birthdays, first days of school, walks to the park, bike rides, bed time, Halloween, days at the beach, or just simple mealtimes - her absence, and this weight, are simply unbearable. 

As the date of Phoebe's death approaches, I am overwhelmed with flashbacks to those finals days, moments and hours. The last night we spent together. The last week. Phoebe's last breath. Moments of heart shattering desperation and helplessness. Moments of clarity and peace. Moments that no parent or child should have to endure. I wonder if we could have done more. I worry that we didn't do enough. I wish we had more time. We had been hearing terrible news regarding Phoebe's health for years. We had many talks with doctors about end of life before it was our time, that when it was Phoebe's time, we were very much in the dark. Everyone in the ICU knew that Phoebe was dying, except us. We still believed and hoped and prayed for one more day. We even tried to get Phoebe home, but in the end - just like everything else - Phoebe left us on her terms. 

We miss her every single day. Every moment. She is present in everything we do, yet her absence is profound and painful. She is everywhere and nowhere all at the same time and it often takes my breath away.

Mae talks about her love for Phoebe and her sadness every single day. At bedtime, she wishes out loud for Phoebe to come back - even if just in her dreams. She worries and wonders if Phoebe is okay. She talks to Phoebe and hears her voice and despite her sadness, despite all of our sadness - we continue to look for and choose joy and hope. Phoebe would want exactly this. 

On November 18th (and every day because the world needs it) please spread some extra love and kindness in honour and memory of our sweet Phoebe. Surprise strangers with a random act of kindness, tell them Phoebe sent you and ask them to pay it forward. We would love for you to share your kind acts with us on facebook or twitter @phoeberoserocks. Say Phoebe's name, share her story. Give the best gift and sign up to donate blood. Make a donation to childhood cancer research - you can give to our run for St.Jude at http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2109846&pg=personal&fr_id=59186

Hug your kids and your loved ones - hug them tight and then hug them again. Never miss an opportunity to tell those you love just that. Be thankful. 



Wednesday, September 21, 2016

Gold on the Hill

I was asked to share Phoebe's story at the 4th annual Gold on the Hill event forChildhood Cancer Awareness. Here is what I said ... 

I have thought a lot about what to tell you today. In October 2010, my daughter, Phoebe, was diagnosed with infant leukemia. I wondered - should I tell you all of the shocking statistics surrounding childhood cancer? That it is the leading cause of disease related death of our kids, yet receives only 3% of federal funding? Should I explain that there are children in Canada who are sent home on hospice because they are unable to access clinical trials out of province? Should I describe how financially, emotionally and physically devastating a childhood cancer diagnosis is on a family? Instead, I decided to tell you about Phoebe - her story and her life, because they speak volumes to how we need to do better for children with cancer in Canada. 

Phoebe was 9 weeks old when she was diagnosed and we were told that she had a 15% chance of surviving her disease and harsh treatment. Imagine knowing that your baby's chances of dying far far outweigh those that she will survive. It was, and will always be, completely devastating. 
 
But, we believed that Phoebe would be okay and we promised to do everything possible to save her. Phoebe's treatment was 6 months of mostly high dose chemotherapy - spent entirely in the in patient unit at CHEO, and a bone marrow transplant at SickKids. We spent a total of 9 months in patient at the hospital and by the time we were finished with transplant, Phoebe was completely tube fed, she had lost the ability to sit up by herself or bear weight on her legs. She completely lost her voice – but through it all she smiled, and we believed that this was her cure. That it would all be worth it in the end.  
 
10 days after we returned home from SickKids, we learned that Phoebe had relapsed. The cancer was back and she was given weeks to months to live. We were told at this time that there was nothing else we could do and we were advised to bring Phoebe home and keep her comfortable.
 
This was in 2011 and Phoebe was about to celebrate her first birthday. For the first time, I think we realized just what we were up against. High risk infant leukemia has very few, if any, long term post transplant relapse survivors. There was simply no data, no research, nothing to suggest that she could be cured, but we were desperate to try. We still believed that she would be okay. 
 
We found one clinical trial in Toronto and traveled back to SickKids. We were so weary and the idea of putting Phoebe through more treatment after what the chemotherapy had done to her tiny body was daunting, but our doctor described this new trial as exciting – he said the drug was targeted, gentle, and promising and that was all we needed to move forward. Phoebe would be the first Canadian child to receive this investigational drug - a first in its class immunotherapy, and unlike chemotherapy, she experienced no side effects. It rid her body of 60% of disease - not enough enough as 30% remained, but to us it was a success. It gave us hope and it opened our eyes to how important and game changing targeted and immunotherapy therapy is.
 
This drug and this point in Phoebe’s journey is also pivotal because it marks the very last time we were able to access or receive any innovative treatment in Canada. This was in 2011.
 
We moved on from SickKids and traveled to St.Jude Children’s Research Hospital in Memphis - a unique hospital in the US where treatment is provided without question to families who don't have insurance coverage. Phoebe received another clinical trial, not offered in Canada, using Natural Killer cells and an innovative transplant with cells harvested from me. Both were successful and she remained in complete remission for over a year.

When Phoebe relapsed a second time, we were at home in Ottawa. We had started to put our lives back together and Phoebe had learned to walk, run, jump, ride a tricycle, sing and talk non stop. CAR- Tcell therapy was being developed in the US and we applied to OHIP for funding and were denied. At the time this treatment was heralded as the breakthrough cure for leukemia, but we weren’t able to access it. We returned to St.Jude where Phoebe received another clinical trial and she remained in remission for 18 months.
 
Phoebe learned to ride a bike with training wheels, we enrolled her in kindergarten, and for the first time in 4 years, I retuned to work as a teacher.
 
When Phoebe relapsed for a third time, our heart ache and devastation turned to pure fear. We had tried so many things. We were terrified we would lose her but when we looked at her she was a picture of health. She had no symptoms of disease, her blood work was perfect. For once we had caught it early. Hope prevailed when we realized that for the first time there was a treatment being developed that was targeted to Phoebe’s very specific type of leukemia. This was a first of its kind therapy for a disease that has seen no advances in treatment or surivial rates in over 15 years. It was only available in the US, but SickKids was trying to open it. We applied for funding from OHIP – explaining that this was Phoebe’s only option, that it was targeted to her disease, that Phoebe simply couldn’t wait for it to open in Canada, that research into this disease is crucial – and we were denied.
 
I remember feeling completely helpless, deflated, desperate. How could this be happening? We were told that OHIP, and this is true for every provincial health insurance policy, will not cover any treatment that is considered experimental despite how promising these treatments may be. This also means that Canadian kids cannot access treatment on early phase clinical trials within Canada if the trial is outside of their home province. We asked every single person we know to write a letter to their MPP, and Ontario’s Minister of Health. Many people who are here today wrote letters. It took almost 3 months, countless letters, interviews on CBC with Phoebe’s doctor from CHEO, more media coverage, and some behind the scenes work and finally we heard that the treatment would be approved and we were covered to travel to Denver.
 
For us, however, that 3 months wait changed everything. It impacted our lives and created waves of complications that we would never overcome. Phoebe was no longer a picture of health with perfect blood work. She relied on blood and platelets to survive and she developed pneumonia due to a weak immune system overrun with leukemia. She began the clinical trial fragile and weak and it didn’t work.
 
When we left Denver and headed back to Memphis and St.Jude to begin another clinical trial, the pneumonia that Phoebe had developed followed us and she suffered more lung infections. The clinical trial was successful and Phoebe was in remission, but we had no choice but to stop treatment and the leuekemia returned.
 
We tried many other clinical trials and chemotherapy at St. Jude to keep the leukemia at bay. We were desperate for more time, but we were never able to make it home again. Phoebe died in the ICU at St.Jude on November 18th 2015. The ripple effects caused by a broken health care system followed us and we were always months behind. We missed a spot in the only curative transplant therapy by two months. It is an incredibly heavy and hard burden to bear and we will never truly know how things could have been, but I do know that if Canada had a system in place to allow children like Phoebe timely access to out of country and out of province treatment on clinical trials – it would have made a difference. No child should be left to wait for treatment as their disease rages out of control. No child should be denied access to treatment when this treatment may extend their life or possibly cure, and geography should never play a role in cancer therapy. It is simply unethical. Parents should not have to enlist the help of every single person they know to gain access to therapy. It should not be a fight, because we all know that when your child or loved one has cancer – there is too much fight already.
 
Phoebe was a joy to be around, smart as anything and so wise, she found light where many only saw darkness – but having cancer as a child, she made clear to us – this was not okay.  I can still here her little feisty voice telling us “this is not okay” and I can hear her asking us to “make it okay”.
 
Ours is an incredibly sad story and I thank you for listening. But it is also a story of hope. It is a story of a little girl who believed that any thing is possible and her family that believed right a long with her. It is a story of research, progress, and innovation – a story of what can happen when we all work together. Phoebe was given a terminal diagnosis in Canada in 2011 because there simply was nothing available here to help her. She lived four and a half years past this diagnosis thanks to research, clinical trials in the US, and a lot of advocacy. This meant that Phoebe was able to celebrate 5 birthdays, not just 1. she learned to read, swim, ride a bike, she went camping and to her favorite beach. Her big sister will remember her. We had 5 years and although this will never be enough, it is something.
 
The Canadian government directs just 3% of funding to childhood cancer research and Phoebe’s story – this is what 3 % looks like.,
 
When Phoebe was here, we used to say that we would “shout it from the rooftops” – we shouted from the rooftops that she was cured when  we were so very happy to have good news. And then, as it became clear to us that there was no cure, we shouted from the rooftops the sheer injustice of it all. Then Phoebe died and our shouts became whispers, pleading with the world to just make it okay. And now that Phoebe is not here, we try as best as we can to continue to shout it from the rooftops that we must do better for our kids, but we need your help. As we learned from Phoebe’s journey and our massive letter writing campaign – we are so much stronger together.
 
Please remember what you have heard here today. Remember our kids and their stories. Take them with you and tell your friends, your family, your elected officials, your neighbours. Shout it from the rooftops that we need to do all we can to as Phoebe would say "make it okay". 

Thank-you. 
 
 
 
 
 

Tuesday, September 6, 2016

Mae's letter to the Prime Minister

Months ago, Mae decided she wanted to write to Prime Minister Justin Trudeau to invite him to Gold on the Hill, the childhood cancer awareness event held annually on Parliament Hill. This year's Gold on the Hill will be on Saturday September 17th at 6pm.

Mae sat down and wrote. She poured her heart out and we talked a lot about Phoebe. The letter she crafted is beautiful and completely heartbreaking and we are so proud of her for sharing her pain and her love so openly.

The letter has been shared almost 1000 times on Facebook. It reached the Prime Minister's director of communications and many people wrote to their MPs to ask their help in making sure it reached the Prime Minister. 

We have since received a call from the Prime Minister's office and although the PM is unable to attend the event, he has offered to speak with Mae on the phone and his office has offered their help with the event. Mae is anticipating this call and has many things she would like to say. She is proud of what she has accomplished in memory of Phoebe and if you ask her she will tell you, that "it's not okay that Phoebe only got five years with us". 

Progress, thanks to little Mae and her big,  beautiful heart that is so full of love and longing for her sister, Phoebe.






Wednesday, August 3, 2016

Phoebe should be turning 6 this Monday. She should be blowing out candles, opening presents, and inviting her friends over to run through the sprinkler and play with her new toys. She should be racing her bike up and down the street, running to keep up with Mae, and laughing until her belly hurts. She should be helping her Daddy make her favorite foods and picking out the most complicated birthday cake. She should be getting ready for grade 1. She should be here, but she's not.

Instead of planning a party and loving every minute of it, we struggle with how to mark this very special day. How do you celebrate a birthday for a child that is so loved but not here? How do we honour and celebrate Phoebe's life? How do we let her know that she is loved beyond measure and missed every single moment? How do we include Mae in all of this and hold back tears? How do we make it joyful when all I want to do is pull the covers up and cry.

We miss her so much. 

How do you parent a child who has died? I struggle with this every day. I struggle with the need to be Phoebe's mom, to care for her, to mother her even though she is not physically here. And while this is true, to me she is here in every other sense. She is here in my thoughts, my heart, my life. She is mine and I am hers and that will never change. And so, I mother her. I keep her things safe. I carefully frame and display her artwork. Photographs of her fill every room of our home. We plan to create a garden for her, complete with a carved stone by her Daddy. We plant trees. Her drawings still hang on the fridge, like she just created them. I imagine her lying on her tummy with her legs in the air - coloring and drawing. I picture her standing tall against the door frame to see how much she's grown. I imagine her telling stories and singing songs with Mae. She is present in our lives, in our house - but then she's not. She is everywhere and nowhere all at the same time. I tend to the plants at her graveside - I water them and after I do, I sit down and talk to Phoebe. Sometimes I sing to her. Sometimes I read. To some this may seem crazy, some people tell us we should move on, but there is no moving on from this and to me, all of this is all I can do to keep from going crazy. We spent every single moment with Phoebe while she was here. We did not leave her side. We relished every second we were able to be with her. Now that she is gone,  we still need to be with her, but we struggle with how. 

We started the Phoebe Rose Rocks Foundation (we are almost all set up with approval from Revenue Canada) so that we can help other families, because no one should ever suffer like Phoebe did, because we need a cure, because Phoebe asked us to "make it okay", but truly I also started it because I need Phoebe's legacy - her life and her memory, to continue. It is another way that I can parent my child who should be here, but is not. 

This new life we have is so hard. It's painful. Each day we wake up with the realization that Phoebe is really gone. Sometimes at night, when Phoebe visits me in my dreams, I can imagine for a brief moment that she's here. I soak in this moment, but then, the sun comes up and I am hit hard with the painful reality that she's not. She should be, but she's not. 

Grief is heavy and hard and it fills every space. Every single crack. It is all encompassing and keeping it in check is exhausting. I spend most of my days pretending that everything is okay. It's not. How could it possibly be okay? No one wants to hear stories of children with cancer and when people ask that innocent question of how many children we have - no one is expecting - two, one should be here, but she died. And so, on the outside we are "fine". We ride bikes with Mae, we play at the park and shop for groceries - we need to do this because the world just keeps turning, but on the inside we ache. I ache physically and emotionally from the sheer effort of pretending. My body literally hurts. My heart hurts. I can't catch my breath. I fight back tears.

And so, this Monday August 8th there will be no excited little girl anxious to start her day as a 6 year old. Phoebe will not instruct us on what she would like for her birthday breakfast and dinner. Instead we will prepare her favourite foods knowing so well that sushi, bean salad and pulled pork will never be the same. We will honour our sweet girl however, like we do every day. We will honour her memory and her life and we will continue to do all we can to make it better.

We will do as Phoebe taught us and look for the joy. We will surround ourselves with the quiet and peace of nature with the hopes of finding our girl. And of course there will still be joy because Mae wouldn't have it any other way and because joy is always found in the memories we cherish of our sweet Pheebs. 

But we will never be the same.

Thank-you to everyone who has sponsored a hole, donated, provided items for the silent auction, and signed up to golf at the first annual Phoebe Rose Rocks Golf Tournament. We are looking forward to a great day and excited to give back and raise money for childhood cancer research. All money raised will be donated to Dr.Jason Berman's lab in Halifax, Nova Scotia and we hope to raise enough to direct to MLL+ leukemia research. For more information on Dr.Berman's groundbreaking lab and research, please visit http://bermanzebrafishlaboratory.pediatrics.dal.ca

To register to golf, donate, or sponsor a hole please visit https://golfmontcascades.golfems2.com/event/phoebe-rose-rocks-foundation-first-annual-tournament




Thursday, July 28, 2016


"It was a fine cry - loud and long - but it had no bottom and it had no top, just circles and circles of sorrow". Toni Morrison 

It has been more than 8 months without our sweet Phoebe Rose. How is it possible that so much time has passed? Time does not heal all wounds, or at least not wounds like ours that can't possibly heal, and in many ways - with each passing day, it is more difficult to live without Phoebe. It is painful. We cling to the beautiful memories we have and do all we can to keep these memories alive and to honour Phoebe's life and continue her legacy of hope. One way we are doing this is the Phoebe Rose Rocks Foundation and we hope to have official charitable status from Revenue Canada in 2-3 months. 

Phoebe's 6th birthday is coming up - she loved her birthday, but was very particular about how it was celebrated. It could only be celebrated once and always on her day. She also planned very far ahead and while she was here, she requested a mermaid cake and I know she would have loved to blow out the candles. This year, instead of planning a party, we are organizing a golf tournament in her memory. Please help us honour our sweet girl and help other children with cancer by registering for the tournament. 

Please follow this link to register: https://golfmontcascades.golfems2.com/event/phoebe-rose-rocks-foundation-first-annual-tournament

Cancer is the leading cause of disease related death for Canadian kids. Many cancers affecting children still have little hope of a cure. Phoebe tried every single treatment available, many of which were 50 year old chemotherapies, and she only ever had, at best, a 20% chance of beating her disease. This is not okay. 

All proceeds from the tournament will go to childhood cancer research, like the research that gave us 5 years with our precious Pheebs.

We love you and miss you so much, sweet Phoebe Rose.


Friday, May 6, 2016

Mother's Day ...



My first Mother's Day without Phoebe and it still doesn't seem real that she's not here. 

I miss everything about Phoebe. I miss her voice, her smile, her touch. Her laugh. How she felt in my arms. The tight hugs she would give - her little arms wrapped around my neck. I miss making her favorite foods and watching her cook with Jon. I miss watching her eat and how she loved her food. I miss helping her. I miss talking with her, drawing with her, and her wise ways. I miss taking care of her. Being with her. I miss hearing her sing from the backseat and shouting "turn it up!". I miss dancing. I miss watching her play and laugh with Mae. I miss putting her to bed at night and waking up with her in the morning. I miss running after her bike, holding her hand, carrying her when she was tired, rocking her to sleep, pushing her stroller. I miss every. Single. Thing. 

This place we are in is very lonely. It is a long and hard road and we are just at the beginning. We are only just learning to live without Phoebe, but as I write that I want to scream - No!! This is not how it is supposed to be. 

Imagine waking up every single day without your child. Imagine going to sleep wishing and praying you will see her in your dreams. Imagine wanting to stay asleep because this is when you see her. Imagine searching for her, for signs of her, but knowing that these signs will never satisfy your longing. Imagine never being able to hold your child's hand again. Imagine never receiving another handmade card and treating the ones you have like the most precious glass. Imagine the only connection you have with your child is through her things. Imagine inhaling deeply the scent of her clothes and toys, just to feel close to her. Imagine needing someone you will never have again, with every breath you take. Imagine the pain and heartache. It is impossible. 

The empty seat at our table will always be empty. Mae will always miss and need her sister. Jon and I will always long for Phoebe. We will always feel guilt and regret and sadness. This does not mean that we won't or don't feel joy, of course we do, we have Mae to remind us of this, but the emptiness that remains is not easily or even possibly filled. How do you fill a space that once held a precious child? You don't. I have heard that we will learn to carry our grief, but I also know that this is the hardest thing we will ever do. And its hardness will last a lifetime. 

Today I finalized the details for Phoebe's headstone. The most unnatural thing in the world is done. Phoebe's name, date of birth and date of death will be carved into stone. Her favorite things - a monkey swinging from a tree, butterflies, a squirrel  and three little birds will also be carved. This was no easy feat and I would like to thank the staff at the Beechwood Cemetery and Rock of Ages for their compassion and kindness. We heard many times that extra care and attention was taken to make sure this stone is perfect for our special Phoebe. We were told that every one working on it knew about Phoebe and was touched by her life and her death. I know that as wrong as it feels to create a grave stone for my five year old, Phoebe would love that it incorporates her favorite things. 

Carved at the bottom of the stone are words with a meaning we learned from Phoebe and Mae. Words they help us to live by. Words that remind me that this incredible ache and the pain I feel are because we have a love so great. 

All you need is love.

We miss you and love you so much, sweet Phoebs. 

This September 18th, the first annual Phoebe Rose Rocks golf tournament will be held at Mont Cascades Golf Course, 30 minutes from Ottawa. We are very excited about this and will be sharing more details soon.