Our ten year old daughter, Bailey, had been battling some nagging knee pain. Nothing too severe, but now annoying enough that she was having trouble playing sports without issues. That Sunday afternoon, we finally gave in and took her to the ER for x-rays. They did a good job hiding what I'm sure they must have seen, because no one gave a hint to the seriousness of her "injury." We didn't have a clue, other than a vague sense of uneasiness because they hadn't provided any concrete answers about her pain. A strange and terrifying early Monday morning call from our pediatrician officially set my fear in motion, although we still really had no idea what horror lie ahead...but the winds of panic were beginning to whip in my soul. Our normally calm pediatrician was trying to maintain composure as she said over the phone, "I think that Bailey has a bone tumor." My knees went weak. An MRI on Tuesday, a surgical biopsy on Thursday and we had a diagnosis... Osteosarcoma. One of the most rare and aggressive forms of childhood cancer. On Saturday, March 10 we were a typical suburban family living normal lives and by Thursday, March 15 - we were the parents of a child with cancer. Just five days separated happiness and terror. And nothing would ever be the same.
September is Childhood Cancer Awareness month. Did you know that? As we have been unwillingly thrust into this world, we have learned so much. Some of the most disturbing information involves the data concerning childhood cancer research and awareness:
Incidence of Childhood Cancer
- Each year around 13,500 children are diagnosed with cancer in the US
- One in every 330 Americans develops cancer before the age of twenty.
- On the average, 36 children and adolescents are diagnosed with cancer everyday in the United States (around 46 per school day).
- On the average, one in every four elementary schools has a child with cancer. The average high school has two students who are current or former cancer patients.
- The incidence of invasive pediatric cancers is up 29% in the past 20 years.
- The causes of most childhood cancers are unknown. At present, childhood cancer cannot be prevented.
- Childhood cancer occurs regularly, randomly and spares no ethnic group, socioeconomic class, or geographic region. In the United States, the incidence of cancer among adolescents and young adults is increasing at a greater rate than any other age group, except those over 65 years.
Mortality associated with Childhood Cancer
- Cancer is the leading cause of death by disease in children under the age of 15 in the United States.
- 1 in 5 children diagnosed with cancer will die within 5-years
- 1 in 3 children diagnosed with cancer will not live-out a normal life-span (excess mortality)
- Some pediatric brain tumors, such as brain stem gliomas and pontine gliomas, are terminal upon diagnosis and no new protocols have been developed in 30 years.
- Many pediatric cancers, including neuroblastoma and disseminated medulloblastoma, are terminal upon progression or recurrence.
- The average age of death for a child with cancer is 8, causing a child to lose 69 years of expected life.
- Childhood cancers affect more potential patient-years of life than any other cancer except breast and lung cancer.
- Cancer kills more children than AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined.
Long Term Health Effects of the "Cure"
- 74% of childhood cancer survivors have chronic illnesses, and some 40% of childhood cancer survivors have severe illnesses or die from such illnesses.
- Childhood cancer survivors are at significant risk for secondary cancers later in life.
- Cancer treatments can affect a child’s growth, fertility, and endocrine system. Child survivors may be permanently immunologically suppressed.
- Radiation to a child’s brain can significantly damage cognitive function, or if radiation is given at a very young age, limiting the ability to read, do basic math, tell time or even talk.
- Physical and neuro-cognitive disabilities resulting from treatment may prevent childhood cancer survivors from fully participating in school, social activities and eventually work, which can cause depression and feelings of isolation.
- Childhood cancer survivors have difficulty getting married and obtaining jobs, health and life insurance.
Funding Disparities
- Despite these facts, childhood cancer research is vastly and consistently underfunded.
- In 20 years the FDA has initially approved only two drugs for any childhood cancer - 1/2 of all chemotherapies used for children’s cancers are over 25 years old
- Research and development for new drugs from pharmaceutical companies comprises 60% of funding for adult cancer drugs and close to zero for childhood cancers. However, the NCI spends 96% of its budget on adult cancers and only 4% of its budget on children’s cancers
- AMERICAN CANCER SOCIETY: In 2010 directed $0.01 (a penny) to childhood cancer research for every dollar of public support.
- LEUKEMIA & LYMPHOMA SOCIETY: directed $0.02 to childhood cancer research for every dollar of public support.
- NATIONAL CANCER INSTITUTE: it's your tax dollars at work. Over the past five years, it has only directed between 3.6 and 4.0% of its total budget, an average of $176 million/year, to pediatric cancer. Why so little?
(Source: "People Against Childhood Cancer")
It appears that people don't care about childhood cancer? But that can't be true. No one wants to see a child hurting. So why then are stores already covered with pink long before October arrives? Where is the childhood cancer gold? Why are kids with cancer not receiving cutting edge therapies? Why has little progress been made for childhood cancers in over two decades? I am as guilty as anyone else and have been wrestling with these questions for months now. Shamefully, this is the first year I have known that September is Childhood Cancer Awareness month. Before having a child with cancer, I never gave it a thought...other than maybe during the occasional yearly radio-a-thon. As moms, we all have the very real understanding that our children are part of a very scary world and that bad things can happen. We typically have a generalized sense of anxiety as we attempt to keep them safe. But the ugly bottom line is it never occurred to me that it could be our family fighting this insidious battle.
Why isn't there more awareness? The answer is likely complex. Childhood cancers are relatively rare. Most people are moved by what touches their lives...which makes the more common cancers more "popular." But when you view the potential life-years involved, as the statistic above mentioned, only breast and lung cancer affect more people. We are a busy and relatively selfish society and we don't often stop to look around unless we are directly affected by something. We all know several people with breast cancer. How many kids do you know battling cancer? I didn't know any. Now I live with one. For obvious reasons, drug companies pour research into medicines that are going to make significant profits. So, if only 13,500 kids are going to be diagnosed with cancer this year - how can that seem like a good financial investment compared to the 20 million people with diabetes or the 5.4 million with Alzheimer's? Companies get involved, but again, it eventually comes down to profits...and pink sells. I'm typically a free market girl through and through, but I do think there are some instances when we must act, not because it makes smart fiscal sense, but because it is morally reprehensible to let any child hurt like this simply because there aren't "enough" of them suffering to make it worth the financial effort. One child is too many.
I think the statistics speak volumes, but they do not open your heart. While the numbers are shocking, they don't begin to describe the daily life these kids must endure...hardships and suffering that if we really stop to think...to imagine our own children going through this...we could not look away. Our hearts would be broken and we would have to help.
How does cancer look in the life of a child? It is...
...being thrust into a very terrifying adult world, full of long words, scary machines and significant physical pain. Missing endless days of school, play-dates with friends, birthday parties...anything and everything that every other kid you know is doing. Having a port surgically implanted in your chest, it will remain there for months and be accessed by needle almost weekly. Pouring toxic chemotherapy sludge or radiation into your body, it is meant to kill the cancer, but it could kill you in the process...you always feel sick, are taking medications constantly and you will vomit well into the double (and if goes on long enough, possibly triple) digits. The cancer killing toxic sludge can also lead to many types of lifelong and permanent damage...ears, heart, kidneys, brain, fertility. Losing so much weight you require a feeding tube. Sometimes going home with needles still inserted...I.V. meds to be administered by either in-home health care, or most likely...mom. Vomiting stomach acid (because you haven't eaten) into a mouth full of raw sores. Losing your hair...but first, it will become like straw and fall out in chunks and it will itch and drive you so insane that you have to choose to shave it because you can't take it anymore. Endless scans and surgeries and spinal taps, exposing your body to so many other potential problems...additional radiation, infection. Weakening your immune system to such a level that the common cold can turn into a deadly infection. The possibility of amputation of a limb, or if not that, then you may survive with other physical disabilities that will prohibit you from doing the things you loved to do before cancer. Potential isolation for weeks on end. Facing mortality. Walkers and wheelchairs. Rejoicing because you are cured, your hair is growing back and you are beginning to return to life...and then your cancer returns. Watching your parents cry, seeing fear in their eyes and coming to the realization that they can't fix this for you. Seeing your family torn apart, spending weeks without being together, siblings missing each other, mom and dad going separate directions. Possibly sending your family into financial ruin. Losing your innocence, your childhood...and becoming an adult almost overnight.
I could go on, but you get the picture. Ugly. Not fit for children.
Cancer is horrendous...for anyone. It is straight from the pit of hell. For a child, that pit seems exponentially deeper. Please take some time this month to really think about what these kids face. I never thought it would be my child. But it is. It could be yours one day too. Or a niece or nephew. Or a grandchild. Maybe make it a yearly appointment in your calendar, to send a donation to an organization that focuses solely on childhood cancer research. In Bailey's case, sarcomas are quite rare as well...so we are zeroing in on sarcoma research also. There are so many great organizations...Liddy Shriver, CureSearch, CURE. The government is certainly not going to get it done. The big, bureaucratic non-profits do very little for kids. Pharmaceutical companies are not the answer. It is our funding of nimble, paradigm shifting, cutting edge organizations that will make the difference.
If the statistics are too much, if this information is overwhelming
and becoming a blur, then please do it for the kids that we
have learned about during our journey thus far. For our Bailey. Or for Grace, Sarah,
Julia, Lily, Courtney, Sierra, Gabi, Alyssa, Robbie, Brandon, Fiona, Garret, Hannah,
Andreas, David, Sean, Bryson, Keaton, Taylor, Marko, Lillie, Truman,
Jacey, Sonya, Sam, Tyler, Cat, Laura, Bryce, Connor, Alexis, Ethan...and the
thousands of others who are either yet to be diagnosed, are currently in the
battle...or who may have already lost the war. Please help. We cannot continue to allow children to suffer so greatly...we must work to give them the opportunity to be kids again.
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