I have written often about how this journey has changed me, about all that I have learned. What I have learned about myself, about capabilities and strength, the human spirit and love, about the importance of time and family. I have seen true and honest kindness, met countless selfless people who devote their lives to helping others. And then there is everything that I have learned about cancer.
Specifically children with cancer.
Before all of this happened to me. Before my life was turned upside down and my sweet baby Phoebe began to fight daily to survive, I knew nothing of this world. I knew nothing of the multitude of children fighting this disease.
And so, I thought I would share a few of these things that I have learned with you because I think it is important and I wish I knew then what I know now.
Childhood cancer is not rare. 46 children are diagnosed with cancer everyday in the US. Each year In Canada, approximately 1500 sets of parents will hear those devastating words "your child has cancer".
In the past 20 years, the FDA has approved one single drug for treatment of childhood cancer. One drug in twenty years. This is Clofarabine, a drug that Phoebe received after her relapse and which also potentially helped to save her life.
Cancer is the number one disease killer of children in the US and Canada.
The cause of many children's cancers are unknown and therefore cannot be prevented.
The effect a childhood cancer diagnosis has on a family is devastating. One or both parents often has to stop working, siblings are shuffled from appointment to appointment, families are separated. The emotional, financial and social impact on each family member is huge.
One quarter of all children diagnosed with cancer will die.
Two thirds of children who survive their cancer diagnosis, will live with severe long term side effects. These include, but are not limited to, secondary cancers, heart problems, infertility, cognitive impairment, lung problems, hearing loss, growth deficits. For many children, once the battle with cancer is complete, a new battle begins.
Childhood cancer research is extremely underfunded.
Funding for pediatric cancer clinical trials has gone down every year since 2003.
In 2010, the American Cancer Foundation allocated $0.01 to childhood cancer research (a penny) the Leukemia Lymphoma Society dedicated $0.02 to childhood cancer research.
The National Cancer Institute directs 3.8% of all funding to finding a cure for pediatric cancer. The Canadian government directs, on average, just 3% towards childhood cancer initiatives.
Many organizations, like St. Jude, Alex's Lemonade Stand, St. Baldrick's, and CureSearch direct the majority of funds raised to pediatric cancer research and treatment.
There is hope.
In my own small window into the world of childhood cancer, I have seen and experienced things that I will never forget. Things that are forever ingrained in my mind. I have held Phoebe in the ICU, while she fought just to take a breath, swollen with pounds of excess fluid. I have worried often. About losing her, about the consequences and side effects of her treatment, about the unknown, and I have imagined conversations that we will have when she is older. Conversations about her life and having children and my heart aches. Yet, right now, I am one of the lucky ones. I have met and loved many children who are no longer here. I have comforted parents and have been comforted by others who have walked this path. I have shed so many tears. I have heard the word "zero" spoken in regards to my baby's chance at survival. I have grasped at the straws of phase one clinical trials, desperate to give Phoebe one more chance at life. I have fought with doctors and pleaded for treatment. I have struggled to be heard. I have listened to talk of "data" and "statistics" in relation to Phoebe's cancer, when in reality, there is so very little research directed at curing or treating infant Leukemia. I have been heartbroken to hear that a clinical trial that could potentially cure Phoebe would no longer be offered due to inavailability of a drug. No money can be made if so few children need it.
Despite all of this, the sad realities that surround me - I am constantly amazed and hopeful. The children that I see everyday are incredible, brave, and courageous. Many are bald or losing their hair, some are missing limbs, and many walk with assistance or are being pushed or pulled in a bright red wagon or wheel chairs, but they are beautiful, bright and charming. They are heroes. Many of the doctors and nurses that we have met on this journey are equally as incredible and I have witnessed progress made towards a cure. Wonderful progress. I believe in a cure and I believe in the people that I have met who are working to make it so.
I write this post because these facts, figures, and realities are always on my mind. And i feel a desparate need to give back and to help.
And so, here is a way that myself and others are trying to help - an effort in making a difference. A team is in place to run the "Sears Relay to End Kids' Cancer". This is an event in which the majority of the proceeds raised (80%) go towards treatment and research of pediatric cancer in Ontario. Specifically, to CHEO's oncology ward and Research Institute, and to the SickKids Foundation. A wonderful thing and a wonderful goal - to end kids' cancer.
The team I mention is called "Phoebe Rose Rocks" and the runners are running (100km, from Ottawa to Montebello) with Phoebe and other children in mind and with a unified goal of contributing $10,000 to this very worthy and needy cause. Our first fundraising event is taking place in the Ottawa area but is open to anyone who would like to participate. It is a penny drive and all of the proceeds from this drive - called "Pennies for Phoebe", will go towards our fundraising efforts and therefore, treatment and research of pediatric cancer in Canada. To learn more about this event and how you can donate your pennies, search "Pennies for Phoebe" on Facebook.
To learn more about how you can help, the Sears Relay event and our team see:
I know that at times it seems like I am always asking for help, but I truly feel that if everyone could see what I see everyday, or could experience even a tiny piece of what it means to watch your child fight cancer, then more people would want to help. And really, every single cent and every effort, big or small, makes a difference, as is evident in the progress that has already been made towards a cure for children's cancers. If incredible strides can be made when such little attention is paid, imagine what can be done with help.
Thank you all for following this journey, for your support, love, compassion, and prayers. Writing this blog and knowing that people out in the world are "listening", praying, and sending Phoebe positive thoughts has truly helped us get through many dark days.
And a little piece of Phoebe good news - she continues to have 100% donor cells.
"Do your little bit of good where you are. It is those little bits of good put together that overwhelm the world." Desmond Tutu