Childhood Cancer is not okay

picture of a young girl in pajamas brushing her teeth by Lauren Mitchellphoto by Lauren Mitchell

Cancer is the number one disease that kills children. Did you know that? Number one. It’s not okay.

Yet it still remains shamefully underfunded. Only 4% of federal funding for cancer research in the United States goes to fund the research of childhood cancers. It should not be this difficult to raise the necessary funds or awareness about the prevalence and grave impact of pediatric cancers. Why is anyone satisfied with this when any one of our precious children could be affected? Thankfully, there have been small changes in the awareness and attention brought to this fight but there are miles to go yet. The funding remains low. That’s also not okay.

image of two young kids playing on bed in pajamas by kari wattenbargerphoto by Kari Wattenbarger

The good news is we can all contribute to raising awareness and the funding of childhood cancer. September is Childhood Cancer Awareness month. In honor of the children and families that need our support, we are sharing words and images. The poignant words, from mothers whose children have been diagnosed with cancer, address what they wish the rest of us understood about families who have received a cancer diagnosis. The beautiful images are of children in pajamas as a nod to PJammin, a program that celebrates children with cancer. Pajamas because children with cancer, “spend months, even years, dressed in their PJs at home or in the hospital as they undergo critical treatments such as chemotherapy, radiation and therapy.”

image of two girls indoors pajamas playing by Heather Whittenphoto by Heather Whitten

For this handful of minutes that you spend here with the heartrending words of these mothers, with the images celebrating pajama-clad children, consider what you could do right now to help find a cure for childhood cancer. We desperately need to make things okay.

image of young boy jumping on bed in pajamas by Niki Boonphoto by Niki Boon Photography

Liam’s diagnosis was definitely  a “before and after” moment. I was recently looking at pictures at my mom’s, some that I had never seen. What I kept going back to besides how little and sweet the kids were was our faces in those pictures, remembering the peace and content we knew then. It’s been a journey finding our way back to that. Obviously, Liam’s diagnosis was devastating but there was much that we refused to change in the midst of that. We felt fiercely that Liam and our family would determine what cancer meant to us and what power we would give to it. Mostly we were determined to preserve Liam and our other children’s spirit and childhood. To remember the blessings in all of it which were SO many. In the years since, probably one the  greatest blessings we have been given besides the years we had Liam is the gift of perspective. We appreciate the every day in ways we probably never would have before. It’s been seven years since Liam’s diagnosis and six since passing and I still look at pictures of him in disbelief that it all really happened to him. It’s still a palpable hurt, one that I think we will be trying to reconcile for the rest of our days. What a blessing though that intermingled with the heaviness of all that we get to still laugh in the remembering of him and celebrate the mighty ways one little six year old changed our hearts and the hearts of so many. How amazing is that?

Maria Reilly, mother to Liam who was diagnosed with Diffuse Intrinsic Pontine Giloma (DIPG) on 4/24/08. She and her husband, Ryan, contributed to the book Understanding the Journey, A Parent’s Guide to DIPG.

photo of a young girl in pajamas in yard touching chime by Rebecca Wang photo by Rebecca Wang Photography

That a cancer diagnosis in a child can happen to ANYONE!  Before it was our family, I had no idea that childhood cancer can not be prevented and the causes are unknown.  I thought it was rare but the reality is, the rates of diagnosis are rising each year.  When this happens to a family, their world gets flipped upside down. They need your help to fight for more funding and research.  They are exhausted from fighting with their child to overcome cancer so its up to you who have “healthily” children to raise awareness.  Get involved!

Cynthia Dawson, mother to Ava who was diagnosed with diffuse intrinsic pontine glioma (DIPG) in 2011.  There is no cure for DIPG and Ava passed away just 11 months after her diagnosis.  

image of a young boy on bed in pajamas by Sarah Lalonephoto by Sarah Lalone

Receiving a cancer diagnosis for your child is a completely devastating experience. There are so many questions, unknowns, and fears that go along with it. There is also a grieving process that takes place. In an instant the childhood and life you imagined for your child is taken from you and them. Receiving my son’s cancer diagnosis was completely soul shattering for me. Families going through this need a strong support system and there is so much you can do to help a family facing this. Anything from babysitting, driving, finances, meals, help with Dr. appointments, to just being a shoulder for them to cry on. If someone you know is going through this, don’t wait for them to ask for help, chances are they won’t ask for it. Offer your help, be present, and have an open heart.

Beth Mancuso, mother to Ezra who was diagnosed with acute lymphoblastic leukemia at the age of 2. Ezra received 3.5 years of chemotherapy and is now 8 and cancer free.

photo of young boy laughing on bed in monster pajamas by antonieta Esisphoto by Antonieta Esis 

I can remember very clearly the moment that I learned my son’s diagnosis. My husband and I had just returned home with him from his CAT scan, and we were waiting around for our pediatrician to call and tell us “He’s got a big head, but everything looks good!” We shared a laugh about feeling nervous over what was probably nothing (because that’s what all parents do when our doctors send us for tests “just to make sure”). Then the phone rang, and the moment dissolved. Our pediatrician wanted us to come to her office right away because the scan had revealed a tumor in our son’s brain. I was still talking to her as we buckled him back into his car seat, but all I could think was, “We’ll get him to a surgeon, we’ll have it removed, and our life will get back to business as usual.” That is not, however, what happened. We learned over the next few days that his tumor was inoperable and that immediate surgery was required to implant a shunt that would relieve the hydrocephalus the tumor had caused. The shunt was permanent; the tumor was permanent; and his prognosis was unknown — permanently. What I want people to understand about childhood cancers is this: when your child receives a cancer diagnosis, what is “normal” changes for the rest of his or her life. Even when a child finishes treatment and goes into remission, life doesn’t bounce back to what it once was. The chapter doesn’t close. The trauma of contemporary chemotherapy and radiation treatments — many of them designed for adults decades ago — leaves children facing life-long physical, neurological, cognitive, and emotional challenges. The threat of a relapse or of a secondary cancer is constant. My own son has been fortunate because his tumor has remained stable since diagnosis. He lives a fairly ordinary life, only undergoing regular MRI’s and appointments with his oncologist and neurologist to monitor his condition. But we are constantly vigilant: vomiting can be a symptom of a flu bug — or a growing tumor. Stumbles can be a sign of childhood clumsiness — or a growing tumor. Headaches can be from simple exhaustion — or a growing tumor. This unease over his future is something to which we have grown accustomed; the present is what gives us peace.

Jo Lien, mother to Sebastian, who was diagnosed with a low grade glioma in April 2012.

Image of young boy in underwear showing muscles by Joe Lienphoto by Jo Lien

For the sake of kids everywhere, let’s move towards okay together by raising awareness and funds to help eliminate childhood cancers. Here are some ways to take action.

  1. Write to your congressman or woman expressing hope that they see this issue as vital and of the highest priority, imploring them to join the Pediatric Cancer Caucus or consider supporting the Star Act, two pieces currently making the rounds in congress worth consideration.
  1.  Apply to be a photographer for the Gold Hope Project
  1. Organize a PJammin event. 
  1. DONATE money to American Childhood Cancer Organization, The Cure Starts Now and Make a Wish Foundation.

photo of young boy yawning waking up in crib by Carolyn Brandt.jpgphoto by Carolyn Brant

1 Comment

  • Liz says:

    Wow. I really had no idea research was so underfunded!! Thanks for shedding light on it with this article and beautiful words from mamas who have been there!

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