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.

Friday, September 27, 2013


It is almost the end of September. Childhood Cancer Awareness Month. I have been reading a series of blog posts this month, put together by Mary Tyler Mom - a wonderful childhood cancer advocate and fellow "cancer mom" who lost her beautiful daughter, Donna, to brain cancer. For the past two years in September, I have read Donna's Cancer Story, a heart breaking yet beautiful and inspiring story. Each day of Donna's story is a month of treatment and life and is written by her Mom. This September I read this, but I am also reading the September Series . Each day brings a different childhood cancer story, written by mothers, fathers, a grandmother, a doctor - all people who have been touched by childhood cancer. I am grateful to Mary Tyler Mom and each of the writers of these stories for sharing and shedding a light on childhood cancer and the need for greater awareness.

The stories are hard to read. They are painful and heart breaking and at times while reading I found myself gasping for air, openly sobbing as many stories hit so very close to home. One story in particular is about the only child I have found to relapse just like Phoebe did. Beautiful Lilli, who is now greatly and profoundly missed. Despite the sadness that these stories evoke, they are also incredibly inspiring and captivating. They are full of love and hope and life beyond cancer and grief. Jon and I have read a few together and they have brought up memories of Phoebe's treatment, things we have pushed to the back corners of our minds. It is hard to believe all that Phoebe has been through and we don't often talk about the darker days. It has been therapeutic. 

Some of these stories are still with me. I carry them around everyday, thinking about the children they are written about, thinking about their parents, wishing there was something I could do, going over detail after detail of Phoebe's treatment and worrying. What if. What if we haven't done enough? I haven't scoured the internet lately for new trials and treatment, what if we are missing something? What if the chemo is making things worse. Should we be doing something else? What if it comes back? What if, what if, what if.

The excessive worrying is probably also due to the fact that in a little over a week, we will travel to Memphis and St.Jude for another round of tests. A bone marrow aspiration, an MRI, and a lumbar puncture to give chemo and to check Phoebe's spinal fluid. All of these tests will be looking for cancer. When (because they will be) they are clear, we will have another three months of life without cancer. Another three months to watch our little girl grow and live and love life to the absolute fullest. And then we will go back again for more tests. My hope is that once we have completed treatment,  eventually three months will stretch to six months, then six months to once a year, and eventually, maybe, hopefully, to an even longer period without testing. A life time. And maybe, just maybe, Phoebe's doctors will once again talk of a cure and Phoebe together in one sentence. They have been hesitant to do this since this second relapse, but when they see her some speak of miracles, of how she continues to surprise and others speak of how far she has come. They still believe.

So for now, I will take the three months, the biweekly and sometimes more often trips to the hospital, the chemo, the hurt, the guilt, the fear and worry, and I will hold on to hope because within this time and since this relapse, we have packed in so much life and we have been able to watch Phoebe do things that I once worried would be impossible. And I know that right now, we are among the lucky ones. 

About some of those things that Miss Phoebe has been doing ...

Yesterday while I was making dinner, I looked out the window at Mae, Phoebe and their cousin playing in the yard. Phoebe running so fast that she looked like she might take off in flight shouting "Mae - I will catch you!". And she did.

Last week Phoebe ate more food at dinner than her dad, Mae and I combined and this was done without the help of steroids. I watched her gulp down milk, and clear her plate of its second helping after also having a first course, remembering a time not too long ago when we measured her intake in ounces, happy if she drank a single one while counting the number of cheerios she consumed and considering the juice of a watermelon as liquid. She is growing albeit slowly so I have no idea where all of these calories go. She does jump and run around a lot. 

Phoebe has sat on the potty more than she has not, and I have thought that she was fully potty trained a handful of times now. I'm ready to throw out the pull ups but we fall off the "potty wagon" about once a month. This month due to a urinary tract infection. Most months it is steroids that does it. When she does go, the look of pride on her face is just beautiful. 

Last night we went to meet the teacher night at Mae's school. Upon returning home, Phoebe told her Daddy that she would be in that class next year.

Phoebe has started to talk about having cancer. Out of the blue, one day she told me quite matter-of-factly that she does not have cancer anymore. That her strong cells go "pow pow" (she tells me this while punching the air with her little fists) and that she is okay. If we talk about going to the doctor, she gets very upset and tells us that she is not sick anymore, that she is going to the doctor just so they can see how big she is. 

This summer, Phoebe went down a water slide, she learned to ride a tricycle, and together with Mae, they brought sunshine to each day.

As September comes to an end, please take the time to read the September Series and Donna's Cancer Story and share these beautiful stories. Stories are so powerful and personal and they can move mountains - they are moving mountains. More people are aware of childhood cancer and my hope is that this awareness will lead to action. The common thread of many of these stories is the simple fact that not one of these moms or dads thought that they would ever be a "cancer parent". I can tell you that this was once the last thing on my mind and now it is all that I can think about. It can happen to anyone. Any child. Any family. 

Thank-you for continuing on this journey with us. 

Our garage sale for St.Jude raised $1383! Thank-you to all who came out despite the rain. And it rained all day. If you would like to give please follow this link http://fundraising.stjude.org/site/TR?px=2109846&fr_id=4820&pg=personal

"If you light a lamp for someone else, it brightens your path too" ~ Buddha

Sunday, September 15, 2013

Phoebe's St.Jude Garage Sale ...

It has been a while since I have written an update on Phoebe, which is a good sign. Phoebe has been doing very well. She has enjoyed her summer with Mae and we have avoided the hospital as much as possible.

We visit CHEO about once every two weeks for blood work and chemo and so far Phoebe seems to be tolerating the chemo relatively well. Or as well as can be expected given that it is chemo. Her liver enzymes were elevated last month and we are not sure if it was chemo related or a virus, but they are on their way down. Her kidney function was also elevated but is also on its way down, so her doctors are not concerned. I, on the other hand, have a hard time not worrying about what all of this chemo is doing to her body. I wish there was another way, or at the very least, some answers or data as to how effective all of this extra chemo will be. I wonder often if it is doing more harm than good. These drugs have been given many opportunities to cure Phoebe and each time have failed, but our reality is that we have no other choice but to continue on and hope that each test and each MRI remains negative. So far so good ... 

Phoebe's next MRI and bone marrow aspirate will be done at St.Jude at the beginning of October. Mae will be joining us and she is especially looking forward to being back in Memphis and talks often about all of the fun things she wants to do while at St.Jude. It is amazing to me, how many good memories she has of the time we spent there and I think it is a testament to the efforts made by the staff at St.Jude to make it a place of healing for every family member. I will always be grateful for how warmly Mae was treated while we were there, she was embraced by an extra large and beautiful extended family. 

Next weekend, to raise money for the St.Jude Memphis half marathon that Team Phoebe Rose Rocks will be running in December, we are holding a garage sale. All of the money raised will go to St.Jude and their efforts to find cures for pediatric cancers. My family has greatly benefited from the work being done at St.Jude as have many other families, not just in the US, but around the world. St.Jude openly and freely shares the research that they do with the world and have been behind many advances made in the treatment of childhood cancers. To name a few ...

St. Jude has developed treatment protocols that have helped push overall survival rates for childhood cancers from less than 20 percent when the hospital opened in 1962 to 80 percent today.

Protocols developed at St.Jude for treatment of childhood cancers are used at hospitals around the world. 

In 1962, the survival rate for acute lymphoblastic leukemia (ALL), the most common form of childhood cancer, was 4 percent. Today, the survival rate for one form of this once deadly disease is 94 percent, thanks in part to research and treatment protocols developed at St. Jude.

During the past five years, 81 cents of every dollar received has supported the research and treatment at St. Jude.

There is still much work to be done and St. Jude recently completed an extensive expansion program that bolstered the hospital’s research and treatment efforts. The expansion included an on-site facility for the research and production of highly specialized treatments and vaccines; an expanded Department of Immunology; and a new Department of Chemical Biology and Therapeutics for discovery of new drugs. New drugs, so important as currently very few new drugs have been approved for use in pediatric cancers in the past thirty years. 

St. Jude pioneered a combination of chemotherapy, radiation and surgery to treat childhood cancers.

Research done at St.Jude showed that personalized  chemotherapy can improve the cure rate and avoid the use of radiation in the treatment of Acute Lymphoblastic Leukemia, therefore diminishing the severity of long term side effects.

 St. Jude was the first institution to develop a cure for sickle cell disease with a bone marrow transplant and has one of the largest pediatric sickle cell programs in the US and Canada.

St.Jude has an international outreach program to improve survival rates of children with cancer worldwide, through the sharing of knowledge and information. There are currently 20 official   partner sites in 15 different countries around the world. International Outreach helps partner medical institutions develop tailored evidenced-based protocols for treating children with cancer and other catastrophic diseases. St. Jude physicians serve as mentors to physicians at partner sites and consult on difficult cases. St.Jude also partners with local fundraising foundations that support the medical programs. This model has proven to be highly effective in providing children in developing countries access to modern treatment and care.

St.Jude is a truly remarkable place and I am very happy to be giving back to this hospital that has given us and so many other families hope. While we were there we witnessed the work of many incredible doctors and researchers and the treatment that Phoebe received is now being trialled in Canada. Knowledge is constantly being shared to benefit other children with cancer. 

If you would like to help, please stop by our Great New Edinburgh Garage Sale, at 124 Keefer St., off Chricton Ave. There will be delicious baked goods, Mae, Phoebe and friends will be serving up lemonade, and we will have treasures galore! Not to be missed! 

If you are unable to come and would like to donate, please visit:


Sunday, September 8, 2013

Our Childhood Cancer Awareness Rally was a success! Tonight the Peace Tower was lit gold in honour of the many children who are fighting cancer, the survivors and the many children who are deeply missed.

It was beautiful and powerful and a truly amazing night. Many people came out to show their support. Hundreds of people. I am overwhelmed with how well it turned out.

The Rally went from a petition to light the Peace Tower gold to a beautiful showing of support and awareness for children with cancer on a national stage.

The guest speakers shared important and invaluable insight into the challenges that families, researchers, doctors and children face in the fight against cancer.

The kids in attendance had a blast with Monkey Rock Music, Rock the Arts Puppets, crafts, face painting and delicious treats.

There was a beautiful candlelit tribute in honour of the many children who have lost their lives.

And then the Peace Tower was lit top to bottom in gold. It was beautiful. It was the product of the hard work, persistence, determination and strength of the childhood cancer community and supporters. The Childhood Cancer Foundation of Canada sponsored the lighting as a tribute to the many Canadian children who have been touched by cancer.

I hope that this event will bring greater awareness, which will result in more funding, more research, better treatment options and ultimately, a cure. We need these things. Throughout my own personal journey with childhood cancer, I have met many determined people. Doctors, nurses, researchers, parents, siblings, advocates, patients all working towards the same goal of making this better, some working around the clock to save a child, advance research or make a family comfortable. I believe that it is these people who are going to cure cancer. It is these people who are going to make it better, but they need our help. The Peace Tower lit up Gold tonight, it was beautiful, it raised awareness, but it is important to note that it was not the Prime Minister of Canada that chose to light it gold in support and acknowledgement of children touched by cancer., it was the collective voices of the childhood cancer community and supporters, pleading for help.

We need to keep the momentum going. Please support the people working to save and improve the lives of children with cancer. Help to change this story. To make treatments and new therapies available for every Canadian child, to advance research, to allow survivors of childhood cancer a chance to grow up healthy and happy without the burden of long term side effects. Please give to organizations that support childhood cancer research and support initiatives. Help us change this story so that every child diagnosed with cancer has the opportunity to grow up. Kids can't fight cancer alone. If you are reading this, I know you know this. Now we need to let everyone  else know.

Thank-you to everyone who came out to show their support on Parliament Hill tonight. You made us proud.

Photo credits: Chris Hofley www.hofley.com