Do you remember the first time you heard the word cancer—the first time you grasped its cruelty and randomness and its unique ability to shake a family to its core? I do. I was five, sitting on the big black couch in my living room, and the word was used to describe a disease ravaging the brain of my 2-year-old cousin, Jonathan, a baby I adored. He passed away a few months later.
If there can be a silver lining to a tragic loss like this one, perhaps it is this: I have been aware of pediatric cancer—and the urgency with which we need to fund its research—my whole life. According to the National Cancer Institute, cancer is the leading cause of death by disease in children past infancy in the United States. By the time they turn 20, 1 in 285 children in the United States will have cancer. That's not a small number—yet so many of us turn a blind eye to it, thinking of cancer as an illness of the elderly. The result: Less than 4 percent of federal funding for cancer research in the U.S. is earmarked for pediatric cancer. We need to do more.
But don’t take my word for it. Listen to mother-of-five Lauren Hammersley, whose daughter Hazel, 5, was diagnosed with stage 3 neuroblastoma (a solid tumor cancer) in April 2013, and relapsed just three weeks ago. I spoke to Lauren from Hazel’s hospital room earlier this week. Here, she shares her family’s story, her involvement with the pediatric cancer charity St. Baldrick’s Foundation, and how Parents readers can join the fight and support families like hers.
Parents: Tell us about Hazel’s first diagnosis.
LH: She was very, very sick. I knew something was wrong. I remember the day that I brought her in to the doctor, I sat in the office and I said, “I don’t know why, but I think she has cancer.” It must have been my mommy instinct, because whose mind goes there? The doctor said, “No, no. It’s probably appendicitis; you need to take her to the hospital right away. She’s really dehydrated.” Then they found the tumor.
Parents: How did you and your husband get through her treatments while juggling work and your other kids?
LH: First and foremost, I would say by the grace of God we were able to get through what we got through. But we’ve also been very fortunate, and a lot of families aren’t as fortunate as we are. Foundations in our community helped us organize a support team, and we have a lot of friends and family who live nearby and who are able to pitch in. Family and friends bring dinner and do laundry and scoop dog poop. People don’t realize the toll cancer takes. It’s not just a month of treatment; it can go on for years. It’s a financial burden and it’s an emotional burden too.
Parents: What was Hazel’s second diagnosis like?
LH: This time, it was the week before she was starting kindergarten and she was feeling good. She had a great summer of swimming and playing and trips to Disneyland. She was counting down the days to school. There was nothing to indicate she was unwell at all, and we went in for routine screenings thinking she would be fine. Then the doctor called and said, you know, we found something new on the scans and we need to do some follow-up tests. It was just, like, “What? Are you sure you’re looking at our daughter’s results?” In many ways, the relapse was the bigger shock.
Parents: What will Hazel’s treatment look like this time around?
LH: When you relapse with her type of cancer, there’s no known protocol. You try anything and everything and hope that it sticks. There’s no way of knowing how long it’s going to take, or how it’s going to affect your child.
The prognosis for relapse also isn’t good, and knowing that is very difficult. However, Hazel is benefiting from a new treatment that received FDA approval last year—and which was actually funded by St. Baldrick’s. It has improved the rates for her cancer’s relapse significantly. A couple of years ago, prognosis rates were between 15 and 20 percent. With this new treatment, it’s up to about 50 to 60 percent.
Parents: Pediatric cancer is underfunded and underpublicized, but relapsed pediatric cancer gets even less attention. Is this relapse awareness a new passion for you?
LH: Even before Hazel relapsed, her cancer wasn’t over—and I don’t think people realized that. After she finished treatment, I saw the support on our Facebook page drop off a little, which is fine. People go on with their normal lives—so did we. But I don’t think people realized that recurrence is very common in a lot of childhood cancers, and that Hazel was at a very high risk of recurrence. When a family goes through recurrence, people think, “They’ve done this before, so they’re good. Let’s stand by them, but they know what they’re doing.” In a sense, I suppose that’s true, but really, it’s just as overwhelming because this time, you fear the known. You know what’s coming and you know how scary it is. Plus, you just got back to normal life, and here you are trying to readjust, and feeling guilty that you have to rely on people all over again. Struggling with those feelings is overwhelming.
Parents: What are the biggest misconceptions people have about pediatric cancer?
LH: Before I was a cancer mom, I didn’t know anything. I had never even heard of neuroblastoma before Hazel was diagnosed. We need more awareness that kids face many different types of cancer. People also don’t know that the research is severely underfunded, or that many kids receive adult-strength chemotherapy. Another misconception surrounds the difficulty of the treatment. People aren’t aware of the toxic side effects that chemo gives children. You think, “OK, they’re going to vomit, they’re going to get nauseated, they’re going to lose their hair.” But the chemo that Hazel received can cause permanent hearing loss, infertility, permanent heart damage, and liver damage, and can stunt your growth, and cause learning disabilities. These are all things that we have to follow-up with for the rest of her life. In 2013, Hazel’s chemo actually almost caused her to pass away. She was in a coma in the ICU for three weeks, all because of the treatment she was receiving. The treatment that was supposed to save her life almost took it.
Parents: If there's one message other parents could take from your story, what would it be?
LH: Families dealing with pediatric cancer are struggling, and need the help of not only their communities, but the whole nation. It is crucial that we all rally together to raise funds. If Parents readers want to donate money for research, I think St. Baldrick’s is the best organization. They’re the top fundraiser for childhood cancer research in the nation. But if you’d rather work on a local level, find foundations in your area that are helping local families. Or go to your local hospital to find out what the needs are there. Or donate books or toys, or donate your time and go read stories to kids. Just don’t forget these families. Kids still want to be kids when they’re going through cancer treatments. They want to run up and down the halls, and play hide and seek, and they want to color and play and watch movies. We need to give them the chance to still be kids, and to do that, we need less toxic treatments. And most of all, we need a cure.
Julia Edelstein is the Senior Health Editor of Parents.