Raise your hand if you have NEVER had a person in your lifetime who was touched by cancer…the room is silent. Any room, in any city, country, house in the entire world and the answer is yes, someone in your lifetime has been affected by the nasty disease we know as cancer. I was a mere 3 years old when my mother was diagnosed with breast cancer. She was 28. I thought for a very long time that she was one of the youngest cases.
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| Photograph courtesy Laura Hernandez |
Reality check came in April 2011 when my daughter, Siena, was diagnosed with Acute Lymphoblastic Leukemia. “Your daughter has cancer.” A phrase no mother or father ever wants to hear, a phrase that I didn’t even fathom possible. You see, I like most of the population, wasn’t aware that childhood cancer is more prevalent than most believe. I was one of the people that turned the channel when the St. Jude’s commercials came on. I didn’t donate to Children’s Miracle Network. I didn’t even know what they were all about. Reality check.
Siena was only 2 years old. She was so sweet and innocent, trusting and kind, her whole life ahead of her, but what now? How could MY little girl have cancer? Kids don’t get cancer, right? It’s a rarity, right? All these are thoughts that went through my head when we were in that Children’s Miracle Network hospital on April 6, 2011. Those first few weeks are really a blur. I look back at the pictures I took and see my spunky little girl struggle to even play. The toxic cocktails we had to give her to save her life seemed to take her sweetness from her, her light seemed a bit more dim, only it wasn’t her light, it was mine . You see children bare this unthinkable burden better than any adult could. As I signed form after form after form for procedures to put chemotherapy into her spinal column, to insert a port in her chest, I feared what would become of my sweet and innocent, trusting and kind daughter. Would she survive this? Reality check.
As time went on, we got into the chemo groove. She felt better with each phase, or maybe her body just got used to it, who knows. I began to research as any mother would do. What I found was staggering to say the least. Rare…no longer a word I associate with childhood cancer, it sucks to be rare. Every 3 minutes a parent somewhere in the world is hearing those dreaded words, “Your child has cancer”. In the time it will take me to write this blog the lives of 10 families will be forever changed as mine was. 175,000 children are diagnosed with cancer each year. 1 out of 5 will not survive. We were lucky, blessed, whatever you would call it, that Siena came out on the other end, ALIVE! She endured 2 years, 2 months and 3 days of cancer treatments, ending treatment on June 9, 2013. She has spent more of her life on chemo than not, but you would never know it to look at her, although she readily shows her scar from her port to all who ask and even some who don’t. Reality check.
My daughter survived, and while I’m thankful, at what price? A recent study shows that because of the treatments they had as kids, by the time they’re 45, more than 95% of survivors will have a chronic health problem and 80% will have severe or life-threatening condition. Siena already suffers from chronic pulmonary issues and some cognitive delays. Why? The treatments she received are not all that different from the treatments they gave my mother in the late 1980’s. Why did she receive the same treatments? Only one chemo drug has been made for a child in the last 20 plus years. ONE! When your child is sick, do you reach for the Tylenol in your medicine cabinet? No, you go get the specially formulated for children, Children’s Tylenol. For the rest of her life, she is at a higher risk of getting another cancer from the treatment that killed her original cancer. We are giving children adult medication. Reality check.
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Photograph courtesy Laura Hernandez |
Currently, childhood cancer research funding accounts for less than 4% of all cancer research funding allotted by the federal government. Funding stands in the way of making these statistics better. This funding must be shared by over a dozen major types and thousands of subtypes. Back to the Tylenol metaphor, say you’re out of adult Tylenol, but you have Children’s Tylenol on hand. You can take that. If the reverse were true, you would go get the children’s Tylenol for your child. The same is true of research done for childhood cancers. Research for kids can be used on adults. The reverse is not true. Adults would benefit from this type of research. Reality check.
So, why would I throw all this at you? Why would I ask you to think about sick, bald little kids? It’s depressing right? Right, but our kids are our future and they need you to think about them. September is Childhood Cancer Awareness Month. The color for our kids is GOLD! I throw all this at you so that you will GO GOLD this September. Perhaps donate to a childhood cancer charity such as St. Baldrick’s that funds childhood cancer research. Spread the word that kids get cancer too. Don’t be like me and turn the channel on the St. Jude’s commercials or the station when they do a radiothon for Children’s Hospital Colorado. Instead, listen to the stories of hope, strength, victory and loss. If you’ve read this blog, you can no longer say that you are not aware! You know the realities. Consider this your reality check!
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Photograph courtesy of Laura Hernandez
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