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Childhood Cancer: The unspoken beast

 

by Melinda Marchiano

The unspoken beast… childhood cancer.  It creeps in without a word, demands the near-lethal to destroy it, and leaves a haunting trail for those it touches.  While cancer is the leading cause of death by disease in children in the United States, improvements in detection, treatments, and survivorship can make this a thing of the past.

Childhood cancer skims my heart on a personal level; it has been four years since it crept into me – demanded the near-lethal be put into me.  And although my enemy has been killed, it has indeed left behind its eerie emotional and physical ashes.  Uninhibited by my own choice, my knowledge of childhood cancer has grown incredibly in recent years.  However, there is still an unbelievable amount to learn, which prompted my interest in further research.  I was a fortunate one…with a 96% cure rate for the stage 2B Hodgkin’s Lymphoma that invaded me, I was thankful for the advancements that had been made in the past.  It was due to the increase in public awareness, those who had preceded my spot in the hospital bed, and the hours spent in research labs that allowed me to stand up to my cancer with a number- a percentage- when I fell weak.  That number, while filled with gratitude, glossed over the sharp edges of cancer.  That number by no means was an excuse, a free pass…a rung which I would easily reach with one small step.

I began to see the dark side of childhood cancer, the side which is swept under the carpet by the sight of St. Jude’s fundraising commercials and smiling Make-A-Wish kids.  The holes were present…deep and wide, they stand only visible to those amidst the battle.  Others saw the filler, and secured in their hearts that the “kids” were being taken care of.  But I heard of those who waited for months upon helpless months to receive a diagnosis, of those who fought against not only their cancer but against harsh treatments not made for a body so small, and of those who, in triumphant remission, still suffered what they deemed an endless battle.  I not only heard, I experienced it, felt it.  So as my heart sings with appreciation of this point that has been reached, I see the many miles ahead which must be run so that childhood cancer can someday reach the finish line.

Many hear the word “cancer” and treat it as it sounds, as one.  However, there are twelve major types of childhood cancer, with variations occurring within the categories– making no two cases alike.  According to the National Cancer Institute, the causes of childhood cancers are largely unknown (7).  Some 36 children are diagnosed each day, with 1 in 5 who is diagnosed succumbing to the disease within 5 years (8).

With such a broad spectrum of childhood cancer types, as well as the extreme individuality of cases, it is easy to see how early detection is a prominent issue.  80% of children are diagnosed in advanced stages, as compared to 20% of adults (3).  The more time spent searching for the cause of the ailing child, the more his or her prognosis is chipped away at.  In addition to often discreet symptoms, a lack of education leaves children, parents and guardians, and even doctors, waiting and wanting to diagnose the simple and commonly-known.  Although detection for cancer overall has increased due to advancements in diagnostic medical technology and regular screenings for adults, early detection for childhood cancer remains grim.  It is through increased awareness and education of symptoms that we can discover these hidden beasts sooner and save children’s lives.

We see them everywhere… pink ribbons.  Ask almost anyone what it stands for and they can tell you.  On the other hand, if you ask them what a gold ribbon represents, most will not have a clue.  In my discussion with Dr. Eugenie Kleinerman of MD Anderson Cancer Center in Houston, Texas, I learned that there are many common misconceptions about childhood cancer.  Misconceptions seem to be the only “awareness” that is out there, making it that much more difficult and serious for those who suddenly get thrown into a world in which the public knows little to nothing about.  Other illnesses, and even cancer as a whole, receive a good deal of attention through various events, fundraisers, corporate partners, etc.  However, childhood cancer currently has no nationally-recognized company, celebrity, or event associated with it– leaving no one, unifying factor which holds childhood cancer together.  Similarly, I was shocked to find that the National Cancer Institute’s booklet on cancer only mentioned children once, stating that they too can be diagnosed (12). It is through the backing of large organizations and businesses, as well as key public figures, that others will acknowledge pediatric cancer on a much larger scale.  Consequently, earlier detection would be a result of greater knowledge.

Going hand in hand with awareness is education of the symptoms of childhood cancer.  Drastic improvements in early detection cannot simply occur from basic awareness.  Healthcare providers, hospitals, organizations, and even schools need to inform children and their parents of red flags that may signal childhood cancer.  Aside from parents and their children, doctors (most notably pediatricians) must be well informed of childhood cancer symptoms so that they can spot it early.  Surprisingly, physicians are not as aware of the disease as one would think and hope.  In a discussion with Dr. Kleinerman about cancer detection in children, she stated that in the majority of cancer cases diagnosed, kids have a multitude of earlier diagnoses ranging from strep throat, to anemia and depression.  With increased instruction and education on the epidemic of childhood cancer and its specific scientific symptoms to medical school students and current doctors, that extra bit of awareness may prompt them to order that one test that diagnoses a child that much earlier.

A child is diagnosed with cancer…now what?  Treatment.  Although treatments for cancer have improved dramatically in the twentieth century, current methods to rid children of cancer are as harsh as ever.  According to Contact Magazine, a childhood cancer publication, “there is an urgent need to develop better treatment approaches to ensure more children and young people are cured” (4).  In fact, while adult cancers have seen a slew of newly developed drugs and therapies, childhood cancer has seen no new development in twenty years, with half of all chemotherapies used on pediatric cancers being 25 years old.  Three out of five pediatric cancer patients develop chronic health problems due to the toxicity of treatments. Part of the reason for this is due to the fact that children are currently being treated with adult drugs (8).  A large amount of therapies today leave children fighting just as hard against treatment as they are against cancer.  For instance, the chemotherapy drug doxorubicin (which prevents DNA in cancer cells from functioning properly) has the potential to cause serious, life-threatening heart problems, most significant in those under 2 (11).  With smaller, more fragile, bodies, children have a difficult time coping with something designed for someone twice or three times their size.  This leads me to discuss the remedy, or rather “cure,” for such harsh treatments– increased research and therefore greater funding for researchers.

According to Dr. Kleinerman, cures are in sight.  Advancements in treating childhood cancer have come from research (10).  Despite the five-year survival rate being 75% as compared to 60% in the mid- 1970’s, research for pediatric cancers are gravely overshadowed by massive research projects concerning the more “popular” cancers.  Those prominent in the public eye as well as those that are big “moneymakers” for the drug companies gain priority and attention when it comes to research (2).  Increased research comes via greater awareness and prominence of childhood cancer in the public mind, as well as through increased clinical trials.  Clinical trials make patients’ information available to researchers in hopes of improving the therapies of future kids with a similar diagnosis.  This allows them to test the effects of a proposed new treatment as compared to an established treatment (4).

So there experimental therapies lie, waiting to be tested… waiting for the financial means that they may use as a springboard to the ultimate cure.  Childhood cancer is said to be “vastly and consistently underfunded” (8).  It is sad to know that all of the childhood cancers receive a mere 4% of the United States federal government’s total funding for cancer (3).  No funding…  no research… no cure… no lives saved.  Dr. Kleinerman shares that, with adequate funding, top researchers are confident that a cure can be found within ten years (6).  Kids are suffering from inhumane treatments and losing their life to something that can ultimately be solved with money.  Through legislation, such as the Creating Hope Act that President Obama recently signed, we can increase government funding for childhood cancer research.  In addition, an overall increase in public awareness will lead to greater private donations and support of research.

It seems that improvements in both detection and the treatment of childhood cancer will lead to the most lives being saved.  However survivorship services are extremely overlooked.  With around 270,000 childhood cancer survivors living in the U.S. today, it has become obvious that a cure does not come without a price (9).  Many often find their mind trapped by the misconception that when a child is done with his or her treatment, they are healthy and ready to resume their pre-cancer life.  Physically and emotionally traumatized by treatment, this post-cancer time is frequently the most difficult time for a child who has survived the killer of all killers.  In fact, some even lose their life during this time due to complications; some cannot stand the endless physical and emotional haunting and take their own life.  Late-effects from treatments can surface months and years afterwards.  These range from heart and fertility problems to second cancers (9). A Wall Street Journal article on the late effects of childhood cancer stated that the “same treatment that saved their life comes back to haunt them” (1).  Some 2/3 of survivors have lifelong effects, a good portion being severe and life-threatening (1).  In a guide for childhood cancer survivors, it says that “chronic illnesses among long-term survivors, if not prevented or at least managed well, could become a national health problem… it is important to make every effort to ensure that the cured child of today does not survive to become the disabled, incapacitated adult of tomorrow” (5).  With increased physical and emotional support and services, such as comprehensive long-term follow up care, this unnecessary hardship and death can be erased.  Hospitals, organizations, and more jump starting programs that aid in coping with depression, anxiety, and post-traumatic feelings, and offer advice about living a normal, productive day to day life after cancer would prove extremely beneficial.  These programs would provide greater hope in the lives of children with cancer and, in doing so, save lives.

AIDs, asthma, diabetes, cystic fibrosis and congenital anomalies combined still do not take as many children’s lives as childhood cancer.  Despite improvements in survival rates in past years, the kids still suffer… and cancer remains their number one disease killer in the United States (8).  By seeking advancements in the detection, treatment, and long-term survivorship of pediatric cancer, we can see multitudes of children go on to lead happy, healthy lives… while leaving their enemy in the past.


References:

  1. Fallik, Dawn. “Childhood Cancer Survivors Face New Threats as Adults”. Wallstreet Journal.  July 2009
  2. Gale Encyclopedia of Cancer: Childhood Cancer. 2004.
  3. Jeff Gordon Children’s Foundation
  4. Keams, Dr. Pamela; Veal, Dr Gareth. “Back to Basics: Clinical Trials-Q&A”Contact Magazine.  Spring 2012.
  5. Keene, Nancy; Hobbie, Wendy; Ruccione, Kathy. Childhood Cancer Survivors: A Practical Guide to Your Future. O’Reilly. Sebastopol, California. 2006.
  6. Kleinerman, Dr. Eugenie, Interview.  Mosbacher Pediatrics Chair, Division of Pediatrics; Division Head, Division of Pediatrics; Professor, Division of Pediatrics, University of Texas, MD Anderson Cancer Center, Houston, TX.  May 1st, 2012.
  7. Childhood Cancers Factsheet, National Cancer Institute.
  8. People Against Childhood Cancer
  9. Survivorship Guide
  10. The Morgan Adams Foundation
  11. Understanding Drug Therapy and Managing Side Effects. The Leukemia & Lymphoma Society.  2004.
  12. What You Need to Know About Cancer. National Cancer Institute. 2005.

 

 

Melinda Marchiano

On December 18th, 2007, at age thirteen, Melinda Marchiano was diagnosed with Hodgkin’s lymphoma. Two days after Christmas, she began her first of four rounds of chemotherapy, followed by three weeks of daily radiation. When treatment ended, Melinda struggled with post-treatment effects; horrible digestive problems morphed into a life-threatening eating disorder that destroyed her physically, spiritually, and emotionally. During this time of recovery, she began writing her story in spiral notebooks.

In October, 2010, Melinda’s book, Grace: A Child’s Intimate Journey Through Cancer and Recovery, was published.  In May, 2011, Melinda accepted the Benjamin Franklin Award for Best First Book (Nonfiction) and a Silver Medal Ippy AwardGrace was also named a finalist in the 2011 ForeWord Reviews Book of the Year Awards.

Melinda regularly brings her message of hope to others as an inspirational speaker. During the summer of 2011, Melinda travelled over 7,000 miles, through 28 states, and visited 15 children’s hospitals. She named her trip Children’s Hospitals Hope Tour. The following summer of 2012, Make-A-Wish made Melinda’s wish of visiting children’s hospitals and bringing awareness for childhood cancer come true. This month-long journey, called Melinda’s Make-A-Wish Hope Tour, sought to bring hope and joy to pediatric cancer patients throughout the Western United States. Melinda visited patients, gave presentations at hospitals, and spoke with the media to raise awareness for childhood cancer.

Melinda gives generously of her time – out of her passion to help others fighting cancer – and has been selected as a LIVESTRONG Leader by the Lance Armstrong Foundation for the past two years. Melinda is passionate about her current project, hosting the childhood cancer documentary, The Truth 365. A freshman at Pepperdine University, Melinda is an honor student who is excited about her future plans to go into the medical field while she continues dancing, writing, and working to end childhood cancer. Melinda’s life mission has just begun…

 

 

 

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