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Sept is Childhood Cancer Awareness Month

When the words “childhood cancer” are spoken, minds tend to conjure images that invariably tug on heartstrings: a bald little girl in a hospital bed holding a stuffed animal; a small boy pushing his IV pole down the hall of a hospital; a toddler with tubes coming from his nose, chest, and arms; or a school-aged child who, instead of looking forward to an upcoming soccer game with peers, is recovering from brain surgery.

We’ve all heard about a patient’s “brave fight against cancer”; the rounds of chemotherapy, radiation or surgeries they have endured; and the broken-hearted parents who will never fully recover after losing a child to the disease.

But when it comes to childhood cancer, how many of us really know much about it?

Since September is international childhood cancer awareness month, and the middle of the month is rapidly approaching, the timing seems apropos to provide a brief synopsis containing a few very basic stat bites regarding the disease.

For starters, childhood cancer is the #1 cause of death (besides accidents) of children in the United States between the ages of 1 and 19 years. This disease claims the lives of more of our young people than any other disease or medical condition in the nation. This disturbing fact alone might cause an individual to take pause and ponder this implication, or it might serve as the inspiration that drives another individual to take action.

The National Cancer Institute (NCI) estimates that nearly 16,000 children, ages 0-19 years, will be diagnosed with cancer in the United States in 2014. Unfortunately, the overall rate of this disease has been rising steadily, albeit slightly, in this country over the past few decades. Researchers continue to explore all possible causes of this rate increase, ranging from environment, genetics and the role of earlier detection.

One basic tenet, however, has emerged as an exigent truth in childhood cancer: specialized healthcare teams solely dedicated to treating the disease in a specialized facility are required for optimal outcomes. In fact, the American Academy of Pediatrics, just this year, updated their guidelines to include this particular issue.

Specifically, their guidelines declare that board-certified pediatric oncologists or hematologists should be in charge of treatment for a child with cancer and that initial treatment should be performed at a facility that specializes in pediatric oncology. The guidelines also specify that every member of the treatment team should consist of pediatric subspecialists for required therapy (eg pediatric surgeons).

Furthermore, the guidelines stipulate that if a patient’s family is not able to travel to a specialized facility after initial therapy, the out-of-town pediatric oncologist is to remain in charge of the child’s treatment, directing the therapy that’s being delivered locally (or wherever the patient is able to travel for treatment).

These ambitious, but necessary, guidelines stem from the fact that nearly every facet of treating a child with cancer differs from treating an adult with cancer, or treating a child with a different medical condition. The most common types of cancer, treatments, responses to therapy, and supportive care measures, vary drastically between adults and children, as well as different diseases.

Since a specialized team is required for the optimal outcomes of childhood cancer, children who live in rural areas often have to travel long distances for treatment.

This kind of travel, coupled with the long-term treatment commitments which can span months to years, often leave families no option but to move near the treating hospital.

Some families, however, simply do not have the resources to move their entire family. This often forces taxing arrangements such as having one parent stay with the child during treatment, while the rest of the family visits as often as possible. This particular scenario frequently means that one parent must quit their job to be with their sick child, while the other parent (as well as the child’s siblings) spends their weekends and holidays at the hospital.

Neither scenario is optimal by any means, but during times of crisis, such as a child undergoing treatment for cancer, every family adjusts their situation to the best of their abilities. The diagnosis of a child with cancer truly affects virtually every aspect of each family member’s life.

Statistics and logistics aside, the point at which lives are changed forever is the instant that parents are delivered the devastating news that their child has cancer. The mere notion that their child might not survive can instantaneously strike sheer terror and sweat-drenched panic that, as a parent, is too overwhelming to digest.

Emotions swell and crash like a tidal wave, fervently bouncing between “we’ll beat this”, because the alternative is completely unacceptable, to “what if ?”. At this stage, emotions are so overbearing and intense that they must be carefully peeled back layer by layer, and dealt with individually, as they are too paralyzing and crushing when taken in aggregate.

Moreover, the anticipation alone of a child undergoing treatment evokes a deep sense of anxiety, dread and fear throughout the family. These feelings are befittingly driven by the well-deserved reputation that cancer treatment has garnered for itself- it is nothing short of grueling.

For the lucky ones, cancer is detected early, prior to any spread, and can be easily removed with surgery. These patients and their families, thankfully, tend to rebound quickly.

Nonetheless, lengthy stays in hospitals, treatment spanning months to years, innumerable needle sticks, and side effects that can be life-threatening, still remain the norm for children diagnosed with the disease. And, unfortunately, the majority of childhood cancer survivors suffer from late side effects that can become chronic medical conditions throughout their life.

Despite these grim statistics and scenarios, a very positive flip-side exists in the trajectory of outcomes for childhood cancer in this country.

First, and foremost, the overall survival rate has now reached approximately 80%. This is a vast improvement compared to a few decades past.

Additionally, a recent paradigm shift has occurred in the way in which research and optimal care for cancer is progressing. Specifically, new approaches for treatment of the disease have become increasingly focused on individualizing therapy. The intent is to minimize the “shotgun blast” approach of traditional chemotherapy and radiation. These traditional therapies do not differentiate between cancer cells and healthy cells, resulting in the indiscriminate destruction of all cells within their pathway.

Instead, agents are now being developed and integrated into standard therapies that specifically target a person’s cancer cells or biologic and genetic components involved in the cancer. They are often referred to as the “magic bullet” or “smart drugs”. These new treatments tend to spare the body’s healthy cells while eradicating cancer cells. Radiation, which is still often an essential component to cancer treatment, also continues to evolve so that minimal amounts of healthy cells are destroyed.

Another important advancement is the improvement of supportive care measures, allowing patients to better tolerate therapy. Yes, patients will still suffer from side effects, but healthcare providers now have a greater armamentarium at their disposal for reducing the severity of many of the crippling and even life-threatening side effects.

Furthermore, a better understanding of long-term chronic conditions among childhood cancer survivors now exists so that healthcare providers can screen for them throughout a patient’s lifetime. This knowledge has provided an impetus for tailoring cancer treatment to reduce, or altogether avoid some of these chronic side effects, without reducing survival rates.

Lastly, as ironic and paradoxical as this might sound, some survivors and their families claim that going through the harrowing experience of childhood cancer has actually given them a new lease on life. They tend to take the small things in life less seriously and truly live to the tune of “carpe diem.” They understand that simply being alive is a gift unto its own that is not to be taken for granted.

Often, survivors become instrumental in providing vital support to “the cause” and metamorphose as important advocates for subsequent childhood cancer patients. They have an intrinsic understanding of the nuances and layers of needs and emotions of these children that no one else can completely grasp.

Since it is September, there are several ways in which awareness of childhood cancer is being raised. Famous buildings and monuments around the world are lit up in gold, as gold is the signature color designated to the childhood cancer ribbon. Famous actors, actresses, TV personalities, and performers are spotlighting the disease. And, fundraisers galore are raising monies donated to research in hopes speeding the finding of a cure. Until the day comes that we can claim a cure, however, let’s remember that no child is exempt from a diagnosis of cancer.

Although childhood cancer is not a “common” medical condition in the United States, and some types of childhood cancers actually have a very high survival rate, it has somehow finagled itself to stake its claim as the #1-killer of our children caused by a medical condition in this country.

Hopefully, the international dedication of September to raise awareness for childhood cancer can serve as a platform to launch increased action to fight the disease. Since awareness is the initial framework in building that platform, it suddenly becomes very important.

This September, let’s celebrate the progress that has been made and continues to be made regarding childhood cancer. Let’s also hope and work for greater, and necessary, progress in the near future. Just as importantly, let’s be aware that our support as a family member, friend, neighbor, loved one, community member and fellow human is necessary for those with a child who has cancer. The support can come in innumerable forms, depending upon the needs of the child and family, as well as our own provisional abilities at the moment.

Perhaps our heartstrings are presently being tugged in a different direction. Fair enough, we all have our causes dear to us for various reasons. The important thing is that awareness is being raised, and that’s the first step.