It is often believed that childhood cancer is ‘rare,’ and that it doesn’t affect many people. However, according to the American Childhood Cancer Organization, there are thousands of children between birth and 19 years old who are diagnosed with pediatric cancer annually. It is a much more prevalent issue than perceived, and this lack of awareness is what leads to the lack of funding. Only 4% of Federal government research funding goes to study pediatric cancer, so many children are forced to endure the harsh effects of adult therapies. In order to increase awareness on this issue, we are providing a platform for people to share what they have gone through and inform others. The people we have interviewed are Kyrell, Lovely (his mother), Ellie, and Carolina.
Could you please introduce yourself and talk a little bit about your experiences with childhood cancer?
Kyrell (11 year old fighting cancer): My name is Kyrell, and I have been battling cancer for a year now. I first realized something was wrong when I was at a soccer game, and my leg cramped up. It got worse and worse, and eventually the doctors diagnosed that it was cancer.
Carolina Valls (mother of child who survived cancer): My name is Carolina Valls. I am a registered nurse and a mother to an 11 year old boy who battled Medulloblastoma, a type of brain cancer, for the past 16 months.
Ellie (18 year old childhood cancer survivor): My name is Ellie, and I was diagnosed with childhood cancer at the age of 14. There was a bump in my leg as well as pain, and doctors thought it was just muscle pain, but later I was diagnosed with rhabdomyosarcoma (a type of tissue cancer).
What qualities in your child do you admire as he/she faces obstacles?
Lovely (mother of Kyrell): He looks on the positive side. He is able to see the good in everything, and always seems to have a smile on his face. He has actually brought our family together because even though we might be going through tough times, he remains positive and happy.
Carolina Valls (mother of child who survived cancer): My son is resilient beyond measure. He has overcome every obstacle that has come his way with the most positive and calm demeanor.
What or who has helped you the most as you/your child undergoes treatments for cancer?
Lovely (mother of Kyrell): The doctors and nurses were very kind and supportive. The other families that we met were helpful, and hearing the inspiring stories in a community brought everyone together.
Ellie (18 year old childhood cancer survivor): I was fortunate enough to have a strong support network, since I had a lot of friends and visitors who would come by daily. I also lived in a ward full of people my age, so it helped me feel less isolated.
What “words of wisdom” and/or advice would you give any young kids/families facing cancer or another difficult struggle?
Kyrell (11 year old fighting cancer): When I first found out I had cancer, I cried.
But when I was told that there are a lot of kids out there who are like me, I felt better. Just feeling like I was not alone, and there are others made a difference.
Ellie (18 year old childhood cancer survivor): I think just accepting that you do have cancer, goes a long way. Staying in denial won’t get you anywhere, and if you keep feeling sorry for yourself you’re going to feel depressed. I’d say accept this happened, and do what you can now.
How did your child/you having childhood cancer change your outlook on life?
Carolina Valls (mother of child who survived cancer): It truly made me realize how precious and fragile life is. You always hear the saying “Life is too short,” but you do not come to realize how true that is until your life, or especially that of your child’s is threatened.
Ellie (18 year old childhood cancer survivor): I don’t really worry about the small things anymore. Too many people stay focused on little problems, but I honestly think if you’re happy and healthy, then it’s going to be fine. I also learned to be more grateful for what I have, and that life is too short to waste it.
What words would you NOT want people to say to you as your family faces challenges?
Lovely (mother of Kyrell): We want to be treated normally. We do appreciate the kind gestures people show, but when you’re treating us like we’re disabled, it kind of gets old.
Carolina Valls (mother of child who survived cancer): “I’m sorry”, “It could be worse”…
What things should people say/do to best support a family with a child with cancer?
Ellie (18 year old childhood cancer survivor): Just be there. And visit often, because when I was first diagnosed, everyone would come by to visit. But as time passed, less people showed up.
Lovely (mother of Kyrell): Be who you were to us before the diagnosis. Don’t change and act different. Just be there for us when we need you.
What kinds of changes do you want to see in the society we are currently living in regarding childhood cancer?
Kyrell (11 year old fighting cancer): [smiling] I don’t know, just talk more about it.
Lovely (mother of Kyrell): People need to be made much more aware about this topic. I was a cancer nurse for more than 10 years, and I didn’t even know someone in my own house had cancer. I was taught all the signs and symptoms, but just not in kids. So when my son was complaining about a cramp in his leg, I had no idea it could be related to cancer. Even though it was my career, and I knew so much about it, I wasn’t educated at all about pediatric cancer. There is a lot of funding and education for adult cancer, but kids need proper treatment too. If my son was diagnosed 3 years ago, he would have been forced to endure harsh adult therapies. But because more research had been done, he was able to have a better experience, and that’s all because of awareness!
Carolina Valls (mother of child who survived cancer): Most research funding is geared towards adult cancers. That needs to change. Our children are our future and deserve more than 4%! We also need to educate ourselves better as a society on ways to reduce our risk of cancer and live healthier lives.
Ellie (18 year old childhood cancer survivor): More funding and less ignorance. People’s’ attitude towards childhood cancer is that it’s rare, and it really isn’t and you see cases increasing year upon year. Companies don’t really see childhood cancer as profitable so they don’t invest as much of their resources in that aspect. And as a result of this children have to be treated with adult treatments, and this leads to a lot of long term side effects.
How do you plan on creating these changes?
Lovely (mother of Kyrell): Ever since Kyrell was diagnosed we’ve been trying our best to make an impact. We’ve been going to interviews, sharing our stories, and supporting people like you who aren’t affected but want to help.
Carolina Valls (mother of child who survived cancer): I have created a website http://www.rnmomcologist.com and Facebook page http://www.facebook.com/rnmomcologist where I plan to continue to share our journey with cancer.
Ellie (18 year old childhood cancer survivor): I’ve done a lot of campaigning. Whether it be on YouTube or Instagram. And I’ve attended interviews, so spreading the word about this issue is really important.
A common theme that surfaces throughout the interviews is a lack of awareness. The perception of childhood cancer being ‘rare’ leads to less research and funding. Children are forced to be treated with harsh adult treatments, and this in turn causes side effects that will affect these kids for the rest of their lives. The key to improving the lives and experiences of pediatric patients is awareness.
Be informed, spread the word!
For more information go to: caring4kidscancer.wixsite.com/childhoodcancer