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One Hundred Percent

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100% – Is What the Survival Rate Should Be For All Kids with Cancer

100 Percent Survival Rate

DAY 7: KIDS ARE NOT JUST LITTLE ADULTS

If your child spikes a fever in the middle of the night, do you give him two adult ibuprofen tablets with a glass of water?  No, instead you reach for the bottle of children’s ibuprofen because you know the adult tablets could be harmful to him.  If your child is in pain because she has broken a bone playing soccer, do you relieve her distress with vicodin or oxycontin?  No, because again, you know that they could be harmful, or even toxic, for her.  And yet, when a child falls ill with childhood cancer, we don’t question giving that child the same medications and treatments we would give to an adult suffering from an adult form of cancer.  Cancer treatments for adults have made remarkable, even miraculous breakthroughs in recent days, but using these cookie-cutter treatments on children instead of investing in new lines of research means that those successes have not been mirrored in survival rates for childhood cancers.  As one mother pointed out, “Everywhere I look, I see pink ribbons and I feel thankfulness—and I feel anguish.  According to an article published in the New York Times on September 22, 2008, as a result of advances in treatment, ‘98 percent of women with early-stage [breast] cancers survive at least five years…’  Why is this true?  Because we have banded together to raise awareness and funding for our mothers, our sisters, our aunts, and our daughters.  Our children who are living with, and dying from, cancer desperately need that same attention—and funding.”

This mother learned this important truth in the hardest way possible: as a mother of a child with Diffuse Intrinsic Pontine Glioma, one of the deadliest of brain tumors, suffering from breast cancer herself.  Several months after finishing her last breast cancer treatment in July 2008, she expressed her outrage in the lack of interest in childhood cancer:

“September 13, 2008 was our nation’s first Childhood Cancer Awareness Day.  I didn’t see anything about it in the news, but I did hear about national “Talk Like a Pirate Day” a couple of days later.  I made some calls to our local news stations, but to no avail…one of the story editors simply said, “So—what’s your event?”  And again, later—”Pitch me a story.”  So I tried giving them the important facts.  2,300 children die from cancer each year.  One-quarter of children diagnosed with cancer will not survive.  Federal support of childhood cancer clinical trial research is 30% less today than it was in 2003.  But the facts generated no interest in national Childhood Cancer Awareness Day.  I was told, “We put local news first.”

Okay. I can handle that.  I have a list of local events.  Like the shock of a family receiving a breast cancer diagnosis on an October Monday afternoon, and taking their six-year-old to the Emergency Room on Thursday only to be told, “There is a large area of swelling in the brainstem; we suspect a mass.”  Or like a mother leaving the Pediatric Intensive Care Unit late one night to go home because she knows she needs to get a good night’s sleep before attending an Interdisciplinary Clinic early the next morning—where her own treatment plan will be recommended.  Might there be any interest in a story about a local pastor, husband, and father being given the specifics of his son’s grim diagnosis and prognosis in one hospital while waiting for news of the specifics of his wife’s diagnosis and prognosis from the Cancer Center at another hospital?

Looking for a human interest story? How about a mother waking up in her child’s hospital room one morning, showering, and walking downstairs for her lumpectomy—while her husband takes over the duties of hospital parent and waits anxiously in his son’s room for news of his wife’s surgery?  How about the same mother moving back into the hospital early on a Sunday morning four days later so that her husband, a pastor, can be in church, only to watch in disbelief as her fun-loving, active six-year-old, determined not to have an accident, becomes too weak to sit up to go to the bathroom on a bedside commode. What about the willingness of that little boy to allow the nurses to help him even with the most private of things—because he knows his mother is recovering from surgery and he is concerned for her well-being?

Not sensational enough? Let’s fast-forward to Saturday, November 24th, 2007, two days after Thanksgiving. A mother sits in a hospital room with her sleeping son. She ends a phone call because she hears an alarm she has never heard before, an alarm letting the nurses know that her son’s oxygen level is dropping. Soon the room is full, and it is determined that the child is disoriented, and then completely unresponsive. Somehow everyone moves with the child on that bed through the hallways to the Pediatric Intensive Care Unit where the intensivist begins the work of saving a precious life. The doctors ask, “Given his prognosis, do you want us to resuscitate him, if necessary?” The father, who has just arrived, breaks down in the unbelievable stress of the moment. The mother realizes the urgency of the situation, pushes emotions aside, and asks, “Do we know what is happening?” The answer is no. “Then, yes, we want you to do everything you can for him.” She stands at the foot of the bed with one of her son’s oncologists.   Together, they watch the PICU teamwork, with purpose, like a machine. The mother steps outside the room only when the child is intubated. The drama continues, as the entire department revolves around that one room, that one little boy. The eyes of those outside the room—every nurse, every resident, every doctor—are looking in the same direction. The parents sign permissions as they are handed to them, and the work goes on. Everything seems to be happening in slow motion. Finally, the intensivist approaches. The child is critical, but stable, on life support.

This is the story of the first month of our lives in the pediatric cancer world.  What will it take for people outside of the childhood cancer community to notice what is happening to our children? What will it take for everyone to understand the urgency of the situation? What will it take for the federal, state and local governments to finally engage in the fight? Will it be the cancer diagnosis of a celebrity’s child or the child of a political leader? Will it be the death of a child belonging to someone in the media?  Will it be your child?”

In October 2013, this mother marked six years as a cancer survivor.  In her words, “I am no longer the mother of a child with cancer; I am the mother of a child who died of cancer on December 4, 2009 at the age of 8.”  We can only imagine her outrage, her sadness at the knowledge that modern medicine could save her life, but not the life of her child.

For this child to have the same chances of survival as his mother, we need to invest in research tailored for his specific type of cancer.  Just as a child with a fever cannot be given adult ibuprofen, a child with cancer cannot be treated like a little adult with a smaller form of adult cancer.  Why must childhood cancers be treated differently?  First, children simply don’t get the same kinds of cancer as adults.  Children can get cancer in their blood, their brain, their bones, their kidneys, their lymphnodes, or their soft tissues (just to list a few), but they do not get the adult cancers that receive the most attention from researchers and the media: lung, breast, prostate, and colon cancer.  Second, childhood cancers tend to be more aggressive and fast-growing than adult cancers.  Moreover, because of the aggressive nature of childhood cancers, and the fact that the symptoms are easily confused with normal childhood maladies, childhood cancers are more likely to be diagnosed in later stages, when the disease is more difficult to treat.  Finally, because children’s bodies are still in a state of growth and development, they are much more sensitive to the toxic and harsh treatments required to fight the disease.  Children who manage to survive their initial diagnosis are commonly diagnosed with secondary cancers directly stemming from their original treatment.  And in many cases, the treatments used to fight either the original or the secondary cancer lead to severe long-term disabilities.  Children’s sensitive bodies require medications and cures that target their disease, not their entire body.

Why do we tolerate the fact that a woman with breast cancer has a 98% chance of long-term survival, while her son with DIPG has less than a 30% chance of survival?  Why do we tolerate the fact that a woman with breast cancer has more than triple the research resources devoted to her than is devoted to her child?  Why do we tolerate the fact that in 2008, the year of this mother’s story, funding for pediatric cancer was $26.4 million, while funding for breast cancer research was $584 million?  These are facts that we should not be tolerating, because they are intolerable.  All children have the right to survive cancer in all its forms.  The medical miracles seen in adult cancers can be mirrored in childhood cancers, but only if the same attention and funding is devoted to them as is devoted to adult cancers.  Join us as we StepUp to increase awareness of this inequality.  Join us as we StepUp to tell the world that cancer’s smallest victims need a larger share of the pie.  What can you do?  Share a post of Facebook and Twitter.  Write to your congressman and remind them, beg them, to support increased funding for research on childhood cancers.  Help us ensure that all children have a 100% chance of surviving childhood cancer.

There are many ways for you to help:

  • A little bird will shout from the rooftops that kids deserve to be a higher priority.  Tweet your members of Congress usingSoundOff with a new message each day. Here is an example tweet:  
  • Posting to Twitter on your own? That’s great! Please use the #StepUp hashtag so we can track our success.  Here are some example posts:
  • Email your Representatives (by clicking either of these links: House and Congress) and ask them to increase appropriations for NCI and reauthorize the Carolyn Pryce Walker Act.
  • Change your Facebook and Twitter profile photos to the “StepUp” image
  • Directly ask three friends to share the message with their representatives

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