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.