Category Archives: Uncategorized

Arnie’s March 2015

March 17th, 2015 We joined Arnie’s March for the  Arnold Palmer Hospital for Childen.  We marched for the children and their families that are facing the hardships childhood cancer brings.  We were surprised to see how many more people came out to support Talia’s Legacy along with so many more teams marching for a CURE.  As we plan and prepare for each year to come we are hopeful that funding and awareness will continue to grow.  We have our sights set on a CURE.IMG_0441

100 Percent

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.”  Click Here to Read More.

30 Percent

30% – The Amount of GOG Federal Funding Cuts Over the Past Ten Years

30% Funding Cuts to COG

Day 6: 30% – amount of COG federal funding cuts over past 10 years (adjusted for inflation)

“…This is a societal injustice that is not made public because children do not have a voice. They are not represented in the media, government, or corporate worlds. They cannot organize massive fundraising drives for themselves, and they are not able to gain the attention of adults who can do something about their plight. Pharmaceutical companies stay away because there is no profit in pediatric cancer research, the government fails to step up, and our children—our neighborhood kids, and our schoolmates—are stuck with the cancer treatments we have been using for the last fifty years.

Something has to change. We can be the difference. Standing up, speaking out, holding firm and not backing down—that is the example Rosa Parks left us. It cannot be more applicable than now. Spread the word, state the facts and see the change. Without an increase in funding for childhood cancer, we will still be using the same old treatments fifty years down the road. Surely the children of our communities deserve better. I know my brother did…” Read the rest of the posts from the families of kids who lost their lives due to poor funding for childhood cancer by clicking here.  

90 Percent

90% – The Number of Kids with Cancer Treated at COG (Children’s Oncology Group) Hospitals

90 Percent at COGS

 

“Most kids in Alabama spend 180 days in school each year. Due to John Oliver’s cancer diagnosis, the accompanying intensive treatment plan, and his weakened immune system, he has missed his entire first-grade school year. Instead, my sweet boy has spent 180 nights in the hospital, and countless days visiting the outpatient oncology clinic for complete blood counts (CBCs), doctor exams, blood and platelet transfusions…and then there were the frantic trips to the Emergency Room to manage the frighteningly sudden onsets of fevers, pain, and nausea. That adds up to more than an entire school year of my son’s life spent within the confines of hospital walls. Rather than reading, playing at recess, and socializing with other children his age, Ollie’s daily schedule involved needle pokes, vomiting, more medicines than I ever thought possible, and a constant barrage of painful scans and tests”…  Click Here to Read More of Sweet Ollie’s Story 

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… Read the Rest of Stella’s Story

100 Types

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

100 types of childhood cancer

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”: Click Here to Read Her Story…

71 Years

71 Years Lost – The Average Amount of Years a Child Loses That Dies of Cancer

71 Years Lost

Talia’s Mom was asked by The American Childhood Cancer Organization, or ACCO, to write what she felt would happen if Talia has another 71 years of life, which is the average amount of time that is robbed from a child who dies from cancer. This video is very emotional and may be hard to watch all the way through, but it’s important to understand why increased funding for Childhood Cancer research is so important.

71 LOST YEARS—A MOTHER’S PERSPECTIVE

“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… Click this link to read more

Today please help by sharing the 71 Years image and telling congress that this is the average amount of life lost when a child dies of cancer.  Tell your congressional representatives as well using Sound Off.