Like most terrible things in life, childhood cancer is a tragedy that parents don’t typically think about. We live in our own insulated bubbles, shuttling kids back and forth to school, planning birthday parties and assuming that all will be well outside of the occasional runny nose or broken bone.
The reality, though, is that more than 13,500 are diagnosed with cancer each year. That’s more than a classroom full each day, according to Kids v Cancer, and it’s enough to completely take your breath away should a diagnosis suddenly settle on your child. Just ask Libby Kranz. She learned that her daughter Jennifer had cancer on Jennifer’s 6th birthday; two days later Libby received news that the tumor was inoperable and fatal. And just three-and-a-half months later, her baby was gone, opening Libby’s eyes wide to the horrors of this tragic disease that currently represents the number one cause of disease-related death for children.
As Libby bravely stands on the front lines of the cancer battle, fighting for a cure through her newly formed nonprofit Unravel Pediatric Cancer, she understands that education and awareness are necessary prerequisites before true victory can be realized. It is in that spirit, then, that she sheds light on some of the darkest truths of pediatric cancer.
TRUTH #1: Kids die from cancer – a lot.
“When we found out that Jennifer had cancer, I remember thinking that I would shave my head with her, that we were going to be in for a fight and that I wasn’t going to let people treat her differently. And I remember that I wasn’t really scared. It was such a vivid thing because I believed kids got bald, and they may have gotten the swollen cheeks and all those things from having cancer, but I truly believed that the vast majority of children did not die from cancer. So the statistic that stuck with me the most is actually the statistic that we used to announce publicly that Jennifer had died, and that’s that seven kids die a day. Seven kids died yesterday, seven kids will die today. On my blog I wrote, ‘Seven kids died yesterday from cancer, and my child wasn’t one of them.’ Then I wrote, ‘Seven kids died today from cancer, and my child was one of them.’ And every time I speak publicly, that’s the statistic that I start out with because it is incredible and horrific.”
TRUTH #2: But funding for pediatric cancer is virtually nonexistent.
“Part of the reason I wasn’t scared is that I figured the vast majority of cancer fundraising went towards pediatric cancer. But the National Cancer Institute—the arm of our government that actually funnels out cancer funding—gives less than 4 percent to pediatric cancer. The rest is all for adult cancers. And that was shocking. And then more shocking to me was that the American Cancer Society gives only one cent of every donated dollar to pediatric cancer. So then I started to get really scared. I thought, ‘What chance do we have if we’ve got no money?’
“But the statistic that I found that made it even scarier for me was that the highest amount of money that comes in for adult cancer is actually from pharmaceutical companies: 60 percent. So the leftover 40 percent of the money that helps to find a cure for adult cancer is filled in with that vast mast majority of the American Cancer Society’s funding, the vast majority of the government money and private funding. But with kids’ cancer, it’s the opposite. Kids get almost nothing from pharmaceutical companies because it’s not a money-maker for them. So kids are now dependent on that less than 4 percent from the government, that one cent of every donated dollar from the American Cancer Society and private funding. And I had no idea.”
TRUTH #3: And so are treatment options.
“Jennifer died from a kind of tumor called Diffuse Intrinsic Pontine Glioma (DIPG). It is the third most common kind of pediatric brain tumor. But here’s the thing: If I had had it when I was my daughter’s age, I would have had the same exact treatment. They would have given me some radiation and sent me home, hoping that I lived for at least 9 months, since 9 months is the average life span with this tumor. And along with that, if my mom had had it, she would have had almost the same treatment. Nothing’s changed in 60 years.
“In the last 20 years, only two drugs have been made specifically for pediatric use in cancer, but in one year alone (I think it was 2011), 23 drugs were made for adults. So our kids are just screwed, and the treatments we do have for them are just toxic. So if a girl gets radiation to her chest, she is more likely to develop a secondary cancer—breast cancer—as an adult than women who have the gene mutation that Angelina Jolie had that made her get the double mastectomy. I look at it like this: If your kid’s sick, you’re not going to give him a grown-up Tylenol; you’re going to give him pediatric Tylenol that’s formulated for kids. But we are giving kids adult chemotherapy. We are giving children adult radiation. That’s the problem. We’re not giving them medication or treatment that is specified for children.”
TRUTH #4: Grief is a family affair.
“I am always broken inside; I am always curled in a ball inside crying in a corner. But I certainly don’t want Child Protective Services to come and take my remaining kids away, so I parent them, and I parent them well during the day, and I grieve at night. They see me cry at least once a day, but that’s my limit. I think that’s fair because they need to see that I’m grieving their sister, and they’re grieving their sister as well. Our 4-year-old struggles just as much as my husband and I do. He was created to be the second in our family, so not only has he lost his best friend, but now he’s the oldest in our family.
“My husband and I started marriage counseling right away because most marriages don’t survive this, and that is not an option for us. Losing a child is truly the worst thing you can experience, and people grieve so differently. So for us, it’s hard because sometimes I want to know why my husband’s in a room alone crying. I want him to talk to me, but what he needs is to be alone in a room crying and not talk about it. And that’s hard. Even little things are tough, like when we get asked how many kids we have. My husband likes to answer one thing, and I like to answer something else. It’s 5 million little decisions like that every single day that we deal with. What do we do with her room? Do we stay in our house or sell it?
“In our marriage, I’m typically strong when my husband is weak, and he’s strong when I’m weak. But we’re both weak right now. We’re both equally broken because we both lost our daughter. We went through hell to even become parents—we went through five IVFs and five miscarriages—so I think we’re actually starting from a very healthy place in our marriage. We’re very good at communicating because we’ve been through some really rough times before. But it doesn’t even hold a candle to this. It’s not even in the same ballpark.”