Zero Percent

0% – The Current Survival Rate for Many Childhood Cancers

Zero Percent Survival Rate

Day 4: 0% – The Current Survival Rate for Most Childhood Cancers

“Imagine that you had a cherubic, mischievous, energetic and moody two year old with flashing blue eyes, a brilliant smile and curly red hair. Imagine that each morning she got you up at 5:15 a.m. by standing up in her crib and shouting, “Maaamaaa, I’m awaaaake! Maaamaaa, where are you?” Imagine if when you went into her room she threw both her arms up towards you in a great big hug and chattered her way into the living room, telling you she wanted Cheerios for breakfast…with banana…and milk…and can we paint now…and watch Caillou. Imagine if when you tried to get her dressed in the morning, she ran away from you laughing, no matter how exasperated you got. Imagine if she insisted on picking out her own clothes, and you let her, rather than fight about it. Imagine if she could sing the entire theme song to “Golden Girls,” could go down the slide on her own, could pee on the potty, catch a ball, dance and chase her friends. Imagine when you step off the subway after work and walk into her daycare room, all the kids turn to look at who has entered the room, and when she sees you she flashes the most brilliant smile and comes running with her arms up, saying “Mama! Mama!” Imagine if no matter how many times she had a tantrum and demanded things from you and exhausted you, she ended each night with a snuggle and a kiss and you breathed in the smell of her curls and felt warm happiness all over. Imagine if you could never love anything as much as you loved your first born child, your dream come true, your daughter.

zero percent survival rate
Now imagine it is 9 months later. Imagine she is lying next to you in your bed. She can’t walk. She can’t use her arms or hands. She can’t hold her head up. She can’t see the television. She can’t tell you she loves you. She can’t hug you. She is lying in the bed sound asleep, but coughing on her own saliva, which she chokes on because she can barely swallow. Imagine she was dying and there was nothing you could do to change it. Imagine if you knew that one day soon you would never get to see her again. Never see her smile, feel her hand slip into yours, kiss her warm cheek, feel her sigh into your chest.

That is the simple reality of what we are living with. And it’s hard. No matter how many good things happen to us, no matter how much we believe in a bright future for ourselves and a time of healing, we are being tortured. No matter how well or easily we manage to get through the days, to talk with our friends, to laugh and joke and even fight sometimes, we are broken inside. It’s a very strange way to live. We need to not focus only on what we are losing, but on all we have gained, but despair creeps in nonetheless.

0% Survival Rate from Childhood Cancer

What is keeping us moving forward right now, even when our hearts are completely broken, is watching how our daughter has chosen to live her short life. How she treats each day as a new adventure; pushes herself both physically and mentally to ensure that she accomplishes what she wants on that particular day. Sometimes it’s something big—painting with her mouth and visiting the pigs at the farm. And sometimes it’s just being able to mouth the words “ice cream,” and then napping most of the day. But she is always true to herself, and even though things are hard for her, she ignores the barriers of DIPG and chooses to forge her own path. Most importantly, she believes that when life gives you a hundred reasons to cry, you need to find a thousand reasons to smile…And in my own smiles, I have become familiar with the bittersweet taste of getting to parent my precious daughter—the best experience in the world, but like a spring day that is much, much, too short.”

DIPG is an acronym no parent should have to learn.  DIPG, or Diffuse Intrinsic Pontine Glioma, is a highly malignant, fast-growing form of childhood brain cancer that disables the functioning of the nervous system.  Because it develops on the brainstem and is stubbornly resistance to chemotherapy, the prognosis for children with DIPG is extremely poor: less than 10% of children diagnosed with DIPG survive longer than 18 months, and long-term survival is almost unheard of.  In fact, DIPG and other childhood brain tumors are among the cancers with the worst survival rates, and it is easy to see why.  Many tumors develop in areas of the brain that make removing the tumor surgically impossible without damaging critical brain functioning, and many forms of chemotherapy, whether administered orally or though the bloodstream, will not reach some areas of the brain, rendering them ineffective.  Sadly, “miracle cures” for other forms of cancers (usually adult) have not had any real impact on survival rates for childhood brain tumors; in fact, there is not been a significant medical development in the treatment of these most deadly childhood cancers in more than 30 years. 

When we hear of a child who has been diagnosed with “cancer”, we immediately want to ask “What’s the prognosis?”  Unfortunately, the answer is just not that simple.  There are hundreds of different types and subtypes of childhood cancers, and each one presents different treatment options and survivability rates.  As in the case of many brain tumors, the specific location of the cancer can have a huge impact on long-term prognosis.  Another critical factor affecting long-term survivorship is when the cancer is diagnosed, and how far the disease has progressed at the time of diagnosis.  Childhood cancers tend to be more aggressive than adult cancers, growing and spreading very quickly to different areas of the body.  Complicating matters even further is the fact that children are not able to describe their symptoms, or their symptoms are commonly misdiagnosed as any number of normal childhood diseases.  For instance, neuroblastoma (a solid tumor that usually develops in the adrenal glands) is most common in children under 5, the population least able to tell us something is wrong.  Because it is often not discovered until it has spread, especially in infants under the age of 1, its long-term survival rate is only 30%.  Another excellent example is osteosarcoma, a cancer that develops in the long bones of the body (often upper arms or legs): when caught in the early stages, osteosarcoma usually responds well to surgery and other treatments and has a long-term survivor rate of almost 80%; however, once it metastasizes, that rate drops to less than 30%.           

“What’s the prognosis?”  As too many parents have learned, the specific answer for their child involves a complicated medical assessment conducted by physicians and specialists too numerous to count.  For us, however, there is really one very simple answer: “not good enough.”  Too many forms of childhood cancer have a 0% survival rate, and the fault is ours.  Give the smallest victims of childhood cancer a greater chance: join us as we Step Up to increase awareness of the lack of funding for research on childhood cancers.  How can you help?  That answer, too, is easy.  Share a post on Facebook and Twitter and ask a friend or two to share it on their sites.  Contact your local congressmen: they have the power to increase federal funding for childhood cancer research, and the responsibility to use it.  Together, we can give funding research for cures for childhood cancers the priority it should to be. 

To read more about Stella Joy’s story, click here and these two beautifully written articles:

http://www.thestar.com/news/gta/2012/12/08/stella_joy_every_moment_precious.html

http://www.thestar.com/news/gta/stella.html

 

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

100 Types

100’s – The Number of Different Types of Cancers in Children #StepUp #SoundOff

100 Types of Childhood Cancers

It is a parent’s worst nightmare: taking your child to specialist after specialist to diagnose the strange symptoms he or she is experiencing, only to hear the doctor utter those dreaded words “your child has cancer.” As the days, weeks, and months continue on, you find yourself mired in an entirely new and unfamiliar lexicon; words you thought you knew take on an entirely different meaning even as you begin learn a whole new vocabulary. Because “childhood cancer” isn’t as simple as it sounds. In fact, there are literally hundreds of different forms of childhood cancer, and each child’s specific treatment and chances of long-term survival depend on exactly what type of cancer he has developed, where the cancer is, and how readily it is accessible to treatment. Listen to one mother’s experience as she begins to navigate the vast and difficult world of “childhood cancer”:

My daughter was 7 years old when she was diagnosed with acute myelogenous leukemia (AML). I remember writing those words down on a piece of paper and placing it on my fridge. I thought I knew what “leukemia” was, when in truth I had no idea how long it would take for me to memorize those words and understand just what they would mean for my precious little girl. I knew what acute meant. I knew that leukemia was a blood cancer but what did myelogenous mean? What was “acute myelogenous leukemia”, and who would help me understand the significance of those three words put together? The answers to these questions and the way in which they came to me were completely unexpected. The little girl in the next hospital room had been diagnosed just a few days earlier with a different type of leukemia―acute lymphoblastic leukemia (ALL). Her family taught me that my daughter’s diagnosis was different from their daughter’s. They said how sorry they were that my daughter had been diagnosed with the “bad leukemia.” All I could think was, how any childhood cancer could be considered “good.” Isn’t all cancer bad? Especially when it happens to children?

Naomi on Chemo Treatment Over time I learned that not only was my daughter’s leukemia different from her hospital friend’s, but that there are seven different subtypes of acute myelogenous leukemia, as well as multiple different subtypes of acute lymphoblastic leukemia. I learned that after “leukemia”, “brain tumors” are the second most-common form of childhood cancer, but each brain tumor is different. I learned that children can have cancer in their eyes, their bones, their muscles, and their liver, or their cancer can arise from the adrenal gland, the lymph nodes, or body’s soft tissues. I also learned that children are NOT diagnosed with the forms of adult cancer we hear most about and receive the most attention―breast, lung, colon, and prostate cancer. I had always believed that children aren’t ‘little adults,’ but this couldn’t have been truer when comparing the types of cancer that adults are diagnosed with to the hundreds of different types of cancer diagnosed in our nation’s littlest cancer patients.

In spite of both girls having “leukemia”, I learned that their diseases were in fact very different, and thus their treatments were very different as well. My daughter went on to have a bone marrow transplant. Her treatment was completed within one year of her diagnosis, but she was subsequently diagnosed with a secondary cancer stemming directly from the treatment that she received to fight her AML (M5). Undergoing the AML treatment when her body was young and still developing also caused endocrine dysfunction, heart and lung damage, and other serious late effects, forcing her to make serious lifestyle decisions. The other little girl’s treatments for ALL lasted almost three years, and resulted in extensive hearing loss, cognitive deficits, obesity, and alienation. Two girls, two types of leukemia, two different treatments. Both survivors, both paying a huge price for that survival.

As this mother found out, it’s not enough to learn that your child has “leukemia” or a “brain tumor”. To ensure your child’s greatest chances of long-term survival, it is critical to know exactly what type of leukemia or brain tumor is involved. When we refer to “childhood cancer”, we are actually referring to more than 100 different cancers. Physicians and researchers broadly group “childhood cancers” into 10 main categories, such as leukemia, brain tumors, sarcomas, bone cancers, and lymphomas, to name just a few. These broad categories are then broken down into specific types and from there into subtypes, depending on where in the body the cancer developed and the type of cells the cancer developed from. For instance, there are nine main classifications of brain tumors, each of which is then broken down still further into a wide range of subtypes. There are two main kinds of bone cancers—osteosarcoma and Ewing’s Family of Tumors—but four types of soft-tissue sarcomas. Imagine how overwhelming it must be for a parent whose child has been newly-diagnosed with “cancer” to navigate through the technical discussions with physicians and specialists, while still trying to come to grips with just the basic facts.

While all childhood cancers tend to be more aggressive than many adult cancers, specific long-term survival rates vary widely within each subtype grouping. Take two different forms of “brain tumors”, for instance. Medulloblastomas, which account for the largest percentage of pediatric brain tumors, are very aggressive and highly malignant, and grow quickly; for high-risk patients, survival rates are only around 50-60% (and the percentage drops drastically for infants). Gangliogliomas, on the other hand, are slow-growing and rarely malignant, and thus survival rates are significantly higher, closer to 90%, although treatment often involves serious long-term side effects. And what about the “bad” kind of leukemia? Long-term survival rates for AML are only around 45-60%, while the most recent studies have shown that ALL has a survival rate of closer to 90%.

So perhaps it should come as no surprise that the treatment options for “childhood cancers” are just as varied as the types of cancer and their long-term survival rates, complicating the job of researchers and making the development of appropriate medications unprofitable for pharmaceuticals. But cancer’s smallest victims deserve just as much attention, research, and funding as adults threatened by adult cancers, and you can help make this a reality. Join us as we Step Up to increase awareness of this inequity and improve funding for childhood cancer research. This is not just another call for donations. This is a call for you to add your voice to the growing chorus: share a post on Facebook and Twitter and enlist a friend or two to do the same. Write a letter to your local congressmen and remind them that they have the power to increase federal funding for childhood cancer research, and the responsibility to use it. Help us give every child, no matter what kind of cancer they are facing, a safe, effective treatment and chance at a full, healthy life: as every child deserves.

You can learn more about Naomi, the girl in the story, at http://hope4acure.net/about

The two videos below share Naomi’s story and the cost of her survival…

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

 

71 Years Lost

71 – The Average Years of Life Lost When a Child Dies of Cancer #StepUp #SoundOff

71 Years of Life Lost

71 LOST YEARS—A MOTHER’S PERSPECTIVE – WATCH VIDEO

What if she had another 71 years?  Why 71 years? Because that is what I’m told is the average amount of time that is stolen from each child who is diagnosed with childhood cancer. To truly grasp the implications of my daughter’s 71 lost years, you must first understand that Talia Joy Castellano was always different.  From her very first breath, it was clear that this beautiful little being was going to be exceptional, someone truly amazing. 

Never one to be rushed, Talia emerged when she was good and ready, her bright, inquisitive eyes assessing her new surroundings with remarkable perceptiveness.

Baby TaliaShe had this innate wisdom about her that made you feel like you were in the company of an “old soul” who somehow knew that she was here to serve a greater purpose.  Long before the diagnosis, you could just tell that if given the opportunity to rule the world, Talia would have done so—with a fairness and wisdom that our world desperately needs.

Her childhood appeared to progress normally at first, until she started exhibiting signs of recurring illnesses that were difficult to treat.  As with most childhood cancer cases, the initial diagnosis was not cancer, but rather the usual childhood ailments that could explain her symptoms—growing pains, the common cold, ear infections, lactose intolerance, etc…  

When Talia was seven, she experienced flu-like symptoms that did not respond to the usual run of antibiotics, and my motherly instincts kicked in.  Something about this just felt wrong, and after a few doctor appointments and a second run of antibiotics, it was time to visit the emergency room.  Looking at the chest X-Ray and seeing a mass, I was gripped with a profound sense of palpable fear and dread. And then they said it…those fearsome words that no one wants to hear, certainly not a mother whose sole mission in life is to keep her children safe . . . “it could be cancer.”  With sweaty palms and a racing heart, I obsessively hovered over the doctor as he ordered the diagnostic tests and surgical procedures that would seal my daughter’s fate.  

Talia Stem CellThe initial results indicated Lymphoma, and as I struggled to digest this disheartening information the second round of tests and biopsies came back, and the doctor solemnly uttered the words that will forever be etched into my brain, “Talia has neuroblastoma.”  I knew from his grave tone that this was a serious diagnosis, but I had no idea what neuroblastoma actually was, or what it meant for the future of my baby, my precious little girl.  I began making calls to update friends and family who were awaiting the test results, but when I mentioned “neuroblastoma” to my friend who was a nurse, I was met with an eerie silence from the other side of the phone.  It was at that moment that I truly began to panic—what did she know about this horrible disease that I didn’t?

Over the next few months we learned a great deal about the type of childhood cancer known as neuroblastoma, and each new piece of information was always followed with a heavy concern, uncomfortable silences, and demoralizing statistics.  I began to hate percentages, as I learned that because of this cancer my seven-year-old daughter’s chances for survival were horrifyingly low. What was happening?  Why it is happening to my daughter?  So many questions flooded my sleep-deprived mind, and my now frantic searches for more information consumed my entire being.  The numbers must be wrong there had to be more statistics, better ones that would give us hope—the doctors must have missed something.

Talia ChemoEvery day felt as though I was trapped in my own worst nightmare, as I tried to navigate this new, unwelcome life we had been forced into.  The words “your daughter has cancer” echoed constantly in my mind and invaded even my dreams, ensuring that there was not a moment’s reprieve from this disease.  It is difficult to put into words what it feels like to watch as your child is ravaged with surgery, chemo and radiation, and to be powerless to do anything but hold her and love her as she writhed in pain, vomiting up any tiny morsel her sickly body tried to digest. Helplessly watching my daughter’s hair fall out in clumps until she was completely bald and being unable to protect her as her pure and innocent little body was marked with needle sticks, bruises and deep scars from countless surgeries—this is something no child or parent should ever have to endure, just as no parent should ever have to listen to the best doctors in the country give their child a terminal diagnosis.

Ironically, as I began to despair, Talia’s strength and spirit grew stronger. At first it was incredibly hard for her.  Her spirit seemed to become limp and gray as she was dragged along from seemingly endless surgeries and treatments, but then that innate spark from within somehow pushed its way out and she began to fight.  She started to smile again, and to embrace what was trying to keep her down, becoming fiercely determined to make “it” look good.  After a particularly difficult relapse she was inspired to go bald and to use makeup as her wig, putting her beauty guru skills to use and creating makeup tutorials for YouTube from the confines of her hospital and bedroom. These videos allowed the world to see what I had always known, that Talia was a shining star, and that the world was a more beautiful place because she was in it.

Bald and Beautiful

Now that you have seen a glimpse of Talia’s remarkable spirit, we can circle back to the initial question—what could she have accomplished if she had been able to live out the next 71 years? This question crossed Talia’s mind so many times during her short life, but even as she earnestly prayed for her life, she remained committed to making the most of every single moment she had on this earth.

As a mother, I can’t help but think about 71 years of missed milestones. She would have gone to high school.  She would have learned how to drive.  She would have gone to prom wearing the most amazing dress, which she inevitably would have designed herself, with a flawless makeup look to match.  She would have graduated high school and possibly gone off to college.  After a few heartaches, she would have found the love of her life, and together we would have planned an over-the-top wedding with a 20-tiered cake and a dress that could somehow shoot fireworks and glitter into the air!  If you followed Talia, you know that there are an infinite number of possibilities as to what she could have accomplished with another 71 years.  The thought brings a smile to my face even as tears are streaming down my cheeks…

I know with complete certainty that Talia would have drawn from her strength and charisma to garner mass support for the ongoing battle against childhood cancer. I can envision her leveraging her entrepreneurial nature to start some sort of celebrity fashion and makeup line, where all proceeds would be utilized to fund the largest childhood cancer research initiative this world has ever seen. Talia accomplished everything that she put her mind to, and above all else she wanted to find a cure for childhood cancer. In my heart I know that she could have… if she only had 71 more years. 

Talai Joy CastellanoDuring Talia’s 6 ½ year battle with cancer, she received treatments that were formulated for adults because, due to a lack of funding, there are no new childhood cancer treatments for Neuroblastoma.  A child’s body is not made to withstand the strength of these poisonous concoctions, and the very treatments administered to save her life, ended up triggering the development of a secondary form of cancer (leukemia), which ultimately led to her death.

If, like Talia, you are incensed by the idea of any child missing out on life’s precious moments because of cancer, we ask you to join us in the Step Up: More Funding for Childhood Cancer Research SoundOff campaign, as we lobby congress to secure increased funding for childhood cancer research through the National Cancer Institute (NCI). You can support the Step Up campaign by sending a letter to your Congressional Representative or by tweeting directly at your Senator/Congressional Reps at the SoundOff campaign website (#StepUp). We are not asking for your money—we are simply asking you to add your voice and lend your support to a cause that is devoted to ensuring that no child’s life is cut short because of childhood cancer.

Visit www.taliaslegacy.org to learn more about Talia’s story.  

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

Step Up

Step Up: More Funding for Childhood Cancer Research

Step Up Funding for Childhood Cancer

Ask Congress to Step Up with More Funding for Childhood Cancer

Good Morning ACCO Members,

Today is the launch of the first stage of #StepUp social media campaign, which will run for the next 7 days. We will be posting a new blog post each morning of the campaign with that day’s core message and any supporting documents, visuals, and social media suggestions. From there, you can choose if and how to incorporate the message of the day into your organization’s social media.

Please read to the end – A coordinated community effort is underway to storm Congress – on foot and online.  Childhood cancer organizations throughout the country are joining together, and we’re going to send Congress a message, “Step UP: More Funding for Childhood Cancer Research.” Read Blog…

Almost everyone has a story to tell about childhood cancer.  The odds are you or someone you know has been radically altered by this disease.  Because the fact is, one out of every 300 children in the United States will develop some form of cancer before their 20th birthday, and very few will survive it.

Despite remarkable long-term survival rates for many forms of adult cancers, survival rates for childhood cancers remain disturbingly low.  But these miracle cancer treatments are sadly ineffective for childhood cancers, which are more aggressive and stubbornly resistant to surgical or chemical remedies.  And children’s young bodies are more sensitive: the harsh treatments required to kill cancer cells, even when successful, often lead to secondary cancers or long-term disabilities.

The successes modern medicine has seen treating adult cancers could be mirrored in childhood cancers if only we were prepared to give them the same attention.  But we don’t.  Did you know, for example, that in 2012, the National Cancer Institute funded more than $600 million for breast cancer research, but only $200 million for all forms of childhood cancer put together?  Childhood cancer could be survivable.  Childhood cancer could be treatable.  If we want it to be.

 You CAN help!  If you are dedicated to beating childhood cancer in all its forms, join us as we storm Congress and demand that they fix this inequality and give our children a chance to survive this terrible childhood disease.  Childhood cancer organizations throughout the country are joining together, and we’re going to send Congress a message: “Step UP: More Funding for Childhood Cancer Research.

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

Every day we’ll share a different tweet that can be found within the SoundOff Campaign.  Please follow our Facebook and Twitter pages closely so we can send a cohesive message to the Hill each day.

This week, as advocates travel to Washington D.C. for Action Days, and supporters from home make their voices heard loud and clear, we’ll take one step in a long journey towards more federal research funding and better treatments for kids with cancer.

Please be a part of this coordinated community effort.

Sincerely,

The Team at The American Childhood Cancer Organization

The Alliance for Childhood Cancer