Childhood Cancer Awareness Rally on Parliament Hill

Join us on Parliament Hill this September 8th, from 6-7:30pm. We will be shouting it from the roof tops.

Kids get cancer too.

We have a fun night lined up. The much loved and very entertaining, Monkey Rock Music will be performing. Rock the Arts Puppets and Molly Penny will be there. There will be crafts, face painting and guest speakers.

Our goal is to raise awareness. To share the message and the hope that greater awareness will lead to increased funding and more research. A cure. That 3.13% of funding from the Canadian Government and only two drugs approved for use in the treatment of pediatric cancer in over twenty years is not enough. That too many children are suffering and dying from this disease and we need a cure. Or at the very least, we need a greater hope of a cure that will come with new therapies and drugs and advances in treatment.

I need to know that if something else happens to throw us off of this smooth road, that there will be something out there to cure Phoebe.

Please join us and help to raise awareness. What better place to share this message than in front of Canada's Parliament Buildings? Where it all happens. We hope that the people who make things happen are listening.

Wear gold or yellow and bring a lawn chair or blanket to sit on if you would prefer not to stand.

Phoebe, Mae, Jon and I will be there to greet you.

Go gold ...

Sitting here at CHEO waiting for Phoebe's blood work results and listening to a little girl screaming in the room next to us. Her screams reduced me to tears. She cried out for nurses to stop, to wait, that she couldn't take it anymore, that it hurt, then she cried for her hands. She just wanted to see her hands. Earlier in the day, Phoebe's nurse was reduced to tears at Phoebe's screams. Phoebe is so used to being poked and prodded that she rarely asks nurses to stop, or says she has had enough. She just cries. Today she was poked twice for blood work. Cancer is especially ugly today.

Phoebe's blood work results show extremely high liver enzymes. Her doctor suspects that she may be fighting a virus, but she is showing no signs or symptoms other than these very high liver enzymes. Phoebe's liver works very hard, it needs to to clear all of the chemotherapy and medications that she receives. It has been through a lot and we need it working well to continue on this path. Each time we hit a bump in this road, I worry. We have dodged many bullets and the fear of the unknown is real and terrifying. We are testing for viruses and will recheck her liver again next week. If the results are still high, her chemo will be put on hold. Fighting a virus and healing a tired liver is dangerous when you add toxic chemotherapy.

Phoebe's other blood work looks good. Her platelets are a bit lower than they are usually but are still normal, and her white blood count is also a touch lower than it is usually, but is still relatively normal.

September is Childhood Cancer Awareness Month. Please don't forget that kids get cancer too. Please honour these young people, that are fighting for their lives and living through so much pain. Honour their families. Phoebe has fought cancer for most of her life. We are grateful for each day but we live in fear. We rely on advances in research as without them, Phoebe would not be here. Plain and simple, she would not have survived her first relapse.

Awareness is key and there are many things that you can do this September to help.

You can tell the stories of children with cancer, you can wear gold, you can donate blood and/or platelets, you can register to become a bone marrow donor. You can give to an organization that supports childhood cancer research and children fighting cancer. Many large cancer organizations like the Canadian Cancer Society and the Leukemia, Lymphoma Society give very little towards children's cancer research.

You can attend our Childhood Cancer Awareness Rally on September 8th on Parliament Hill and like us on Facebook for more information and updates. www.facebook.com/gogoldcanada.

You can come to The Big Rig in Ottawa on September the 3rd between 3-4pm as Ottawa Mayor Jim Watson proclaims this day as Childhood Cancer Awareness Day. Phoebe Rose will be the Candlelighters' Ambassador and we are very honored to be involved. Thank-you Candlelighters for all that you do for families and children fighting cancer.

We need this story to change. Children should not be spending beautiful summer days screaming for help in a small hospital room.

I would love to hear about what you are doing to raise childhood cancer awareness this September.

Phoebe is Three!

Phoebe turns three today. She is busy and joyful and always has something to say. She is boisterous, tenacious and so much fun. She is amazing and has come so far. She is full of life. She is mine, and so I am biased, but she really is something special.

Each year we celebrate with Phoebe is amazing. We are so grateful to be able to watch her grow and thrive, despite all of the ups and downs and challenges that her life has brought her. To watch her you would never know the challenges she has faced, and if you ask her, she will tell you that she is just fine.

After what Phoebe has been through to be here, each day is a big day and reason for celebration, but birthdays are extra special. I have been reflecting a lot recently on Phoebe's journey and on all of the people we have met who have helped her to be who she is today. We have a lot to be thankful for and many people to thank.

I always come back to St.Jude and all that they have done for our family. I don't know where we would be without the doctors and staff there. They saved us when we had nowhere else to turn, and they kept our family whole while doing it. I have decided to give back to this wonderful hospital in a way that I know how, and so I am running the St.Jude Memphis half marathon in December. It will be the second anniversary of Phoebe's second and more successful transplant. A transplant that we hope will continue to save her and keep her cancer free.

I made a short video to honor Phoebe's journey to age three. She has endured more in her three years than most people will in a lifetime and yet she continues to smile and take on everything that is thrown at her. She inspires me.

Happy birthday bright and shining Phoebe Rose.

I have been having some technical difficulties on this site lately, so once again you have to copy and paste the links.

Below is the link to the video:

http://www.youtube.com/watch?v=4HcMx3aqMLM

And here is the link to team Phoebe Rose Rocks, running for St.Jude

http://fundraising.stjude.org/site/TR?px=2109846&fr_id=4820&pg=personal

Thank-you for continuing on Phoebe's journey with us ...

Music to my ears ... go Phoebe go

All is right in our little world today.

First thing this morning, Phoebe woke up and wanted to sit on the potty (this makes for big news around here), she did indeed sit and has been, in her words, in "big girl underwear" all day long. I am very proud of her. Despite my requests and efforts for her do this in the past, like everything else, she is doing it on her own time and in her own way. And that is okay.

This afternoon, we got results from Phoebe's MRI and lumbar puncture. Phoebe's spinal fluid is clear and the MRI is normal. Normal. That word is music to my ears. The MRI is a test that is particularly stressful for me. I feel like we can handle nasty cells in the bone marrow (although I hope we never have to), as that is what we have been handling and dealing with for so long, but nasty cells in the belly, I am not so sure. I am so thankful for this good news.

Our next test will be a bone marrow aspirate, at the beginning October and it will be done at St.Jude. We are looking forward to seeing familiar faces and being back at this wonderful hospital. Phoebe is particularly looking forward to visiting the zoo and riding the horse and carriage in downtown Memphis.

Today we have had big and small victories. And tomorrow I know we will have more.

Go Phoebe go ...

We are still working to light Parliament Hill gold this September, but I learned recently (after speaking to many different people in many different government departments) that to light the Peace Tower from top to bottom gold (like was done in blue for Prince George), it will cost $14,000.

I don't think that there should be such a huge cost associated with raising awareness, especially when the point of increasing awareness is to hopefully encourage an increase in funding for childhood cancer research. The Canadian Government, through the Canadian Institute for Health Research, dedicated only 3.13% in 2006-2012 to finding cures for the twelve unique cancers that affect children. Thousands of children are living with cancer in Canada today, and many, like Phoebe, are unable to find options to treat their disease at home. We need to do better. And so, we are thinking outside of the box, and trying to come up with ways that we can light the Hill gold ourselves. We have some ideas, so stay tuned.

In the meantime, if you have not yet signed or shared the petition to light Parliament Hill Gold, please do. And if you have signed and shared, please share again. http://www.change.org/en-CA/petitions/light-parliament-hill-gold-on-sept-21st-for-childhood-cancer-awareness