September. Childhood Cancer Awareness month. I sat here and looked at those words for a long time thinking “what do I want people to know about childhood cancer?” As I think about this question I think about my family’s experience and our story with cancer, as well as so many of the families we help that are facing this diagnosis. So this year I decided to give you the grueling statistics and facts again -because they are important, but I’ve realized they are also easily accessible for people to find and educate themselves on. If you want to know the facts on childhood cancer you can Google them anytime. But what you cannot Google is the impact or feelings of parents and their families who have or had a child with cancer. So for that reason I will share the facts with you at the end of this blog and will take some time this September to share a compiled list of what I want you to know about how childhood cancer affects the parents and/or family.
- First let’s state the obvious: childhood cancer sucks. It is unfair, it is wrong, it is horrific. No child should ever have to go through this diagnosis and no parents should ever have to watch their child go through this.
- Most parents with a child with cancer is not as strong as you think. I know that I’m not as strong as you think I am. As a parent, cancer is one of the worst diagnosis you can hear for your child. The word “cancer” sends a parent into panic mode. It is unknown territory, something no one wants to enter. I can’t tell you how many times someone has said to me “I don’t know how you did (or do) it, I just couldn’t” or “you’re so strong and brave, I couldn’t handle it.” Yes you could. But just like me and everyone else you don’t want to. When your child is sick you step up to the plate and take care of them. There is no other choice. You have to be strong and brave because they need you to, not because you want to. Just because I keep my composure doesn’t mean that I don’t break down and cry. I do so most times when I’m alone or in my car. I do hide my pain in front of my children and family at times because I needed them to draw strength from me- the person who loves them more than anything or anyone. But you should know that as many times that I can stay strong, there are times when my family and children have and need to see me sad because sometimes I need to draw strength from them. We are a team and our love and strength for each other gets us through everyday.
- A family with a child with cancer is not privileged. It brings me great sadness when I hear families we help through the foundation worry about taking “too much” because of what others say or think about receiving some amazing experiences or gifts from the community. I’ve heard people talk about how lucky we or these families are to receive such donations. Lucky? Really? My family and I’m sure every family we’ve helped would trade every trip, every cent, every gift to have our children never have to go through this. Most have no idea how a parent with a child with cancer feels and we would never wish that upon our worst enemy. The words “your child has cancer” will never sink in. Which leads me to #4.
- We are not the same we once were. I cannot say I’m the same person I was before. I am forever changed and look at life in a very different way than before Gracie’s diagnosis. Life and all it’s moments become more fragile and precious. There is no judging, for you truly don’t know what anyone is dealing with unless you walk in their shoes. Even though a parent is forever changed we still need our friends to make us laugh, to be there when we cry and we still want to be there for them in return. Because after all, we are still human.
- Childhood cancer is not all smiles and fun. On social media we often see pictures of bald kids receiving treatments with smiles on their faces. We even see kids who don’t lose their hair and we think “wow they must be ok and doing great”. They might be, but I guarantee you that behind those smiles there is a different story. I want you to know that behind those smiles (which can be hard to catch) are tears from surgeries, accesses to ports, procedures, anesthesia, chemo treatments, needle pokes, blood transfusions and so much more that can lead to a very sick child and very worrisome parents. It saddens me to think this was what Gracie knew her life as. I often wonder if she thought this was a normal life? Behind those kids, the pictures you don’t see too often of are the parents. The parents now face each day with Dr. reports, hospital and/or clinic visits, lists of drugs and the side effects they cause that are being given to their child, blood levels, potassium levels, WBC and levels and acronyms of so many different things you never knew about. The questions are endless for a parent- Does the child have a fever? an infection? Should they be around other kids for risk of getting sick? Can they swim with their port? Can they go to school? As a parent your life is now filled with worry- each and every minute while your child is receiving treatment. So although our children and ourselves may look ok in that facebook picture… there is a lot you don’t see or know about us.
- This September let’s not forget how wrong childhood cancer is in a child. Let us not forget the pain and suffering these children experience from their tumors, surgeries, chemo treatments, and radiation. Let’s not forgot that we lose way too many of these children, and the devastation it brings to their parents, siblings, grandparents, aunts, uncles, friends and community, or the loss to our world of these special children, that I believe would make it a better place.
As promised here are some facts and statistics about childhood cancer:
- Worldwide, every 3 minutes a child is diagnosed with cancer.
- Cancer is the second leading cause of death in children (after accidents). About 1,250 children younger than 15 years old are expected to die from cancer in 2016.
- Childhood cancer causes around 90,000 deaths per year and in high-income countries is the second highest cause of death amongst 5-14 year olds.
- Childhood cancer is often detected too late because parents and health workers do not have sufficient awareness of the warning signs.
- The latest drug developed for childhood cancer in the US was 30 years ago.
- Children/adolescents with cancer suffer as a result of severe and toxic treatments which cause lifelong health issues and challenges.
- The treatment and care of childhood cancer requires a whole interdisciplinary team, to provide not just the medical treatment of the child, but also the psychosocial support for the child and the whole family.
I am so thankful to my friends and community for their ongoing support. Five years later you all continue to amaze Geoff, myself and our foundation board members with your generosity, donations and support! This September we ask you to continue to take this awareness month and do something, take action that will help us find a cure or help a family. Make a donation, come to the Night of Grace, run a race, have a lemonade stand, host a dress down day at work, cook a meal at The Ronald McDonald House, write your congressman about funds for childhood cancer, help a family who has a child with cancer. Can’t think of anything to do? We’ve created a list of ways you can help us help others. Check out our website (www.amazinggraciesgift.org) under “50 States of Grace” or email me and I can give you ideas.
A big thank you to those who are already taking action and raising awareness. Stay tuned for pictures of our community Going Gold!