0% – The Current Survival Rate for Many Childhood Cancers

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.

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.

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:  

• I just sent a #SoundOff to my Reps in Congress about #StepUp. Would you hit this link and do it too? http://www.soundoffatcongress.org/nY2f

• 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:

• Step Up: More Funding for #ChildhoodCancer Research #StepUp http://www.soundoffatcongress.org/nY2f
• Children with cancer deserve more federal research funding. Tell Congress to #StepUp: http://www.soundoffatcongress.org/nY2f
• Increase appropriations for NCI #StepUp – More Funding for Childhood Cancer Research http://www.soundoffatcongress.org/nY2f
• Help us virtually storm Congress: Ask your Reps to  #StepUp & support more funding for childhood cancer research. Please share!

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

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?

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:  

• I just sent a #SoundOff to my Reps in Congress about #StepUp. Would you hit this link and do it too? http://www.soundoffatcongress.org/nY2f

• 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:

• Step Up: More Funding for #ChildhoodCancer Research #StepUp http://www.soundoffatcongress.org/nY2f
• Children with cancer deserve more federal research funding. Tell Congress to #StepUp: http://www.soundoffatcongress.org/nY2f
• Increase appropriations for NCI #StepUp – More Funding for Childhood Cancer Research http://www.soundoffatcongress.org/nY2f
• Help us virtually storm Congress: Ask your Reps to  #StepUp & support more funding for childhood cancer research. Please share!

• 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: More Funding for Childhood Cancer Research

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:  

• I just sent a #SoundOff to my Reps in Congress about #StepUp. Would you hit this link and do it too? http://www.soundoffatcongress.org/nY2f

• 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:

• Step Up: More Funding for #ChildhoodCancer Research #StepUp http://www.soundoffatcongress.org/nY2f
• Children with cancer deserve more federal research funding. Tell Congress to #StepUp: http://www.soundoffatcongress.org/nY2f
• Increase appropriations for NCI #StepUp – More Funding for Childhood Cancer Research http://www.soundoffatcongress.org/nY2f
• Help us virtually storm Congress: Ask your Reps to  #StepUp & support more funding for childhood cancer research. Please share!

• 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