Pediatric Cancer Awareness Month

So, I'm a day late and a dollar short on this one, but I figure I should go ahead and post anyway.  Cancer Support Community blog reached out to me and asked if I would write a guest blog post in honor of pediatric cancer awareness month.  I was happy to! They ran a final version with two parents perspective just a couple of days ago, so I wanted to wait and let them get the post up first.  You can see the post here: Cancer Support Community Blog It was nice to be asked to share our experience!  I am posting my original version below:

Pediatric Cancer Awareness Month

You may already be aware that September is Pediatric Cancer Awareness Month.  I couldn’t be more aware, despite the fact that I’d much rather be blissfully unaware.  September has been everything awful about pediatric cancer to our family. Our son Hans' first symptom popped up in September of 2006.  He was just three years old when he woke up one morning with a small bruise on his left testicle.  It would take a full month for this and other symptoms to lead to his fateful diagnosis:  Stage IV, High Risk Neuroblastoma.

Over the course of his six-year battle with Neuroblastoma, each September was a difficult time.  Hans never got to have the typical "Back to School" experience.   It was a heart breaking balancing act of deciding whether to start school or hold back, whether to bring a teacher to the house or send him into a classroom.  Theses choices were made challenging due to the nature of Hans’ aggressive cancer and the multiple treatment methods and clinical trials we had to employ to combat it, along with their unpredictable and sometimes dangerous side effects.  Like many kids battling cancer, Hans never complained about his lot or the concessions he had to make. But for me, September was a showcase for the difficulties children with pediatric cancers face.  I grieved for Hans and his struggles each September, as well as each of his young friends who had lost their battles and who wouldn't be going back to the classroom - so many empty spots on the bus.  

Ultimately, after a six-year battle, we would lose our Hans to his cancer on September 21, 2012 at the age of nine.         

Before Hans was diagnosed, aside from a few St. Jude’s ads and billboards, we knew little about pediatric cancer.  An awareness month is an excellent vehicle for sharing some of the most important facts about pediatric cancers.

·      Pediatric cancers can happen to any child, as if out of the blue. Little is know about the causes of most pediatric cancers and they tend not to be hereditary. Unlike with adult cancers, there are few tests for screening and early detection. Cancer.org

·      43 children are diagnosed with cancer each day and approximately 15,700 kids will be diagnosed in the U.S. each year.  CureSearch

·      Pediatric cancers are the number one disease killers of our children.  More U.S. children die of pediatric cancer than of any other disease/illness. St. Baldrick’s

·      Children’s cancers are far less prevalent than adult cancers and so they receive much less in research funding. Just 4% of the NIH cancer budget and just 1.4% of the American Cancer Society’s budget goes toward pediatric cancer research.  People Against Childhood Cancer PAC2

Facts and figures aside, a pediatric cancer diagnosis can be brutally devastating, not just for the child, but for the entire family.  When your child is diagnosed, your relationship with your community of origin is forever altered.  Friends and families members may do their best to support you, but you will undoubtedly be challenged by dark feelings of fear and isolation.

 When your child is in treatment for a pediatric cancer, your life becomes unpredictable and out of control.  Symptoms like pain and fever can have you racing off to the clinic or ER at all hours of the day and night. Your singular priority becomes the basic care and survival of your child.  And as a parent in charge of his/her care you have to use every tool in your personal tool kit to ensure your child’s best possible outcome.  You will be hyper-vigilante and on call 24 hours a day 7 days a week.

         The only way to get through it is with a lot of help and support. It can be the most humbling part of being human to ask someone for something that you think should be obvious. But you have to be sure to ask your friends and family for what you need. Tell a friend, “we need you to come down and see us at the hospital, we start to feel all alone in here.” 

         If at all possible, connect with other families facing the same or similar diagnoses and make connections. You can build a profound sense of community with families “in the same boat” as you, and it will make you feel less isolated.  As Anne Lamott writes in Stitches,  [we humans] are “social tribal, musical animals, walking percussion instruments.”  We function better when we feel like part of a group. 

         Together, we can join forces and turn awareness in action. After absorbing the impact of initial diagnosis and getting our bearings, many families find a little bit of solace and meaning in banding together and fighting back.  We can work together and enlist the support of others that love us, to promote awareness, which spurs donations and funding for research and ultimately cures. 

          As for me, as difficult as it sometimes is, I tend to say “Yes” to almost every opportunity I have to honor my beautiful son and his valiant fight again Neuroblastoma.  Throughout the year, but most profoundly, each September it is with great pride that I remember Hans’ bravery, his great love, his beauty, and the zen-like state he could tap into when he needed to get through difficult procedures or bouts of pain.  I am moved by the resilience of children fighting pediatric cancers, and of the ability of their families to endure and persevere.  And I know that there is great power in what we can do when we come together.