Kids Get Cancer, Too!

On November 28, 2013, the term Black Friday took on a whole new meaning for my family. With Thanksgiving over and Christmas just weeks away, my daughter’s household woke up with happy thoughts of decorating the house, baking cookies, and generally beginning to feel the spirit of the season. As the day was only getting underway, my son-in-law Shane noticed a bump just above my granddaughter Kayla’s left clavicle. Probably nothing, they thought, but it couldn’t hurt to have the pediatrician take a peek just to confirm that it was “nothing” and they could get back to ornaments and cookies. By the end of that day, however, my daughter Lisa was having her first conversation with a pediatric oncologist at Seattle Children’s Hospital.

Just before Christmas, the diagnosis was complete: Kayla had high risk, stage 4 neuroblastoma. She would spend the next thirteen months on a treatment schedule which consisted of three phases and included chemotherapy, surgery to remove the mass, radiation, bone marrow transplant, and immunotherapy. All of this would take place at Seattle Children’s under the supervision of Dr. Julie Park, a leading neuroblastoma specialist.

Kayla had just had her second birthday in September and was a happy toddler with an eight-month-old baby brother. The last thing on anyone’s mind at that time was spending the next thirteen months in cancer treatment. But on that very black Friday, my family became a “cancer family,” and our sense of “normal” got a major reboot. Lisa’s family life was no longer structured around play dates and trips to the park; the new normal was structured around hospital stays, phases of the treatment schedule, testing and scan days, and the daily possibility of medical emergencies. For the grandparents, the new normal was a tag-team plan to help care for the household and especially the baby. For Roan, little brother, the new normal was days at a time without seeing his mommy because she had to be at the hospital with his sister. And for all of us, the new normal meant looking into the ugly, terrifying face of death, not knowing how this awful ordeal would end.

For those of you who don’t know our story, our precious Kayla is still very much alive and looking forward to celebrating her fifth birthday [updated: 8th birthday] this month. She has suffered losses as a result of her life-saving treatment, some of which we won’t know until she’s older; but we’re grateful every day that our world is still lighted by her smile, made musical by her laugh, and energized by her creativity and zest for life.

I’m writing this article because September is Childhood Cancer Awareness Month; and I think there are lots of people who, like me, thought cancer a rare occurrence among children. Middle-aged and older people get cancer, but kids not so much. Right? No, that’s wrong. In reality, cancer is the number-one cause of death by disease in children past infancy in the United States (National Cancer Institute). Many people assume any childhood cancer is leukemia; but although leukemia is the most common type, other common types are brain and other central nervous system tumors, lymphoma, rhabdomyosarcoma, neuroblastoma, Wilms tumor, bone cancer, gonadal (testicular and ovarian) cancers, and germ cell tumors (National Cancer Institute). In addition to these, there’s a list of more rare types of childhood cancer. A young friend who was diagnosed at the same time Kayla was had osteosarcoma in the humerus of his right arm. All together, there are 16 major types and over 100 subtypes (Cure Childhood Cancer).

Here are a few more facts I think everyone should know about the occurrence of childhood cancer:

• The incidence of childhood cancer is on the increase, averaging 0.6% increase per year since mid 1970’s resulting in an overall increase of 24% over the last 40 years (Coalition against Childhood Cancer, CAC2).
• One in 285 children were diagnosed with cancer in 2014 (CAC2).
• 16,000 U. S. children are diagnosed every year. Specifically, 43 children per day or 15,780 children per year were expected to be diagnosed with cancer in 2014 (10,450 ages 0 to 14, and 5,330 ages 15 to 19) (CAC2).
• More than 40,000 children undergo treatment every year (CAC2).
• The average age at diagnosis is 6, compared to the average age of 66 for adult cancer diagnosis (CAC2).

Statistics vary because researchers use different definitions of “child.” The above statistics apply to people from birth through 19 years of age.

And these are a few of the sobering facts about the prognoses for children who are diagnosed:

• More children die of cancer every year than adults died on 9/11 (Kids v Cancer).
• Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined (Kids v Cancer).
• The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life (Kids v Cancer).
• The average 5-year survival rate for childhood cancers when considered as a whole is 83% (meaning an overall 17% die) (The Truth 365).
• Survival rates can range from almost 0% for cancers such as DIPG, a type of brain cancer, to as high as 90% for the most common type of childhood cancer known as Acute Lymphoma Leukemia (ALL) (The Truth 365).
• The average survival rate not including children with ALL is 80% (The Truth 365).
• In 2010 there were 379,112 childhood cancer survivors in the United States (The Truth 365).
• Approximately 1 in 530 young adults between the ages of
 20 years and 39 years is a survivor of childhood cancers (The Truth 365).
• More than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age; these health-related issues are side effects of either the cancer or more commonly, the result of its treatment. One third will suffer severe and chronic side effects; one third will suffer moderate to severe health problems; and one third will suffer slight to moderate side effects (The Truth 365).
• About 35% of children diagnosed with cancer will die within 30 years of diagnosis (The Truth 365).
• On average, about 17% of children die within 5 years of diagnosis. Among those children that survive to five years from diagnosis, 18% will die within 30 years of diagnosis (The Truth 365).
• Those that survive the five years have an eight times greater mortality rate due to the increased risk of liver and heart disease and increased risk for recurrence of the original cancer or of a secondary cancer (The Truth 365).
• The death of a child is one of the most traumatic events a family might face (Kids v Cancer).
• The average cost of a stay in a hospital for a child with cancer is $40,000 per stay (The Truth 365).
• On average, pediatric hospitalizations for cancer cost almost five times as much as hospitalizations for other pediatric conditions (The Truth 365).
• Families who have lost children are often financially and emotionally depleted (Kids v Cancer).

There’s much more information available, but this gives you a good primer on the subject.* (List of links below the article)

Finally, here are a few other disturbing statistics:

• For 2014, the National Cancer Institute (NCI) budget was $4.9 billion. It was anticipated that childhood cancer would receive 4% of that sum or $195 million (The Truth 365).
• Prostate cancer (patient average age at diagnosis, 66 years), receives more research funding from NCI than all childhood cancers (patient average age at diagnosis, 6 years) (The Truth 365).
• There are 71 potential life years lost on average when a child dies of cancer compared to 17 potential life years lost for adults (The Truth 365).

Only 4% of the research funding available is designated specifically for childhood cancer! That needs to change. Now. I’m all in favor of saving the hoo-ha’s and the tata’s, but our children also deserve at least a fair chance at those extra 71 years!

It’s difficult to find anything positive about being a cancer family, but our family was fortunate in many ways. My daughter and son-in-law live 20 minutes from one of the leading children’s hospitals in the country, so they were able to be in their own home during treatment except the 135 in-patient days (this is the total of individual days spread out over 13 months). Many families have to travel to be near their treatment center and be out of their homes for months at a time. My son-in-law has excellent health insurance through the company he works for, but we all know that many families face financial hardship on top of the physical and emotional toll because they have no insurance or inadequate insurance. Kayla has grandparents who either are retired or have flexible work arrangements so that we were able to be in Seattle as long as we were needed. Lisa and Shane had made the decision to be a one-income family (his) when Kayla was born, so they had already made the necessary budget adjustments and didn’t have to deal with those concerns at the same time they were facing Lisa’s needing to live at the hospital with Kayla for 135 days.

Childhood cancer is a nasty, ugly thing, and it affects the whole family and community. My family and I will be forever indebted to Team Kayla who saw us through the darkest days in ways too numerous to list here. Thank you again!!!

If this information is new to you, learn more, and then use your influence to continue building awareness and to increase research funding. Check out the Make-a-Wish Foundation and all of the other organizations that support families devastated by this horrible disease. Visit your local children’s hospital if you have one. Check out Mikayla Vickers’s Facebook page “Packages of Hope.” Make September the beginning but not the end of your childhood cancer awareness.

Knowledge is power! And now you know.

*Find more information here:

https://www.thetruth365.org/cancer-facts/

http://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet

http://www.kidsvcancer.org/facts/

http://www.curechildhoodcancer.org/about-cure/childhood-cancer-facts/