Ellie Baber

Living Learning Loving

[Joe Baber @JoeBaber1]

Joe Baber
While August is not the designated month for any major pediatric cancer awareness campaign, it could be an excellent time to promote Leukemia and Lymphoma. If you wait until September, which is the designated month for this cancer, EVERYONE will be wearing GOLD for Childhood Cancer Awareness Month. Did you know that Leukemia strikes more children than any other kids' cancer? Don't wait, DO IT NOW! Like Brain, Sacomas, Neuroblastoma, and others, Leukemia deserves it's own month! If you haven't yet, make your plans to go to CureFest in Washington DC. It starts September 18th when all of us will be wearing gold to promote Childhood Cancer Awareness for all Childhood Cancers. https://t.co/PWOf3Un60y

[Joe Baber @JoeBaber1]

Break the myth! Leukemia is NOT the GOOD Cancer.
First, there is no such thing as a "good cancer. While the five-year survival rate for childhood leukemia is about 90% overall, driven by high success rates in treating Acute Lymphoblastic Leukemia (ALL), there are other factors to consider.
2. A 90% Five Year Survival Rate merely means that a 6 year old diagnosed with ALL and treated with standard protocols will live to age 11, period. Due to the often toxic treatments given for blood cancers, there is a high probability of late term effects that could affect long term health or even cause a shortened life span.
3. 10% of the diagnosed and treated children will die before 5 years. Last year, it is estimated that 420 children died during the five year treatment term.
4. Despite improvements in 5-year survival, long-term SURVIVORS of childhood cancer are at four times the risk of death compared with the general, aging population.

September, while designated for Leukemia, is also the month designated for Awareness of All #ChildhoodCancer (Go Gold). August is a great month to spread awareness and break the myths related to blood cancers. Since August is wide open, there is less chance of your message getting lost among the remaining 11 major pediatric cancers. Do it now and keep the momentum going all the way through September.

[Joe Baber @JoeBaber1]

While August is not the designated month for any major pediatric cancer awareness campaign, it could be an excellent time to promote Leukemia and Lymphoma. If you wait until September, which is the designated month for this cancer, EVERYONE will be wearing GOLD for Childhood Cancer Awareness Month. Did you know that Leukemia strikes more children than any other kids' cancer? Don't wait, DO IT NOW! Like Brain, Sacomas, Neuroblastoma, and others, Leukemia deserves it's own month! If you haven't yet, make your plans to go to CureFest in Washington DC. It starts September 18th when all of us will be wearing gold to promote Childhood Cancer Awareness for all Childhood Cancers. https://t.co/tWJiHXXTgr

[Joe Baber @JoeBaber1]

Have you seen the news? This is the worst situation in over a decade! We have Critical Blood Shortages across the nation! Supplies could not be getting any lower! YOU can make a difference! The Red Cross advises that if every donation center could get only 3 more donors to give blood, they could correct this crisis. Please take time to make a donation, each unit of blood provides 3 units of platelets which are critical for chemotherapy patients, young or old. Kids need lots of blood to fight #ChildhoodCancer. You would be amazed at how much blood is needed each day! Find a location near you: https://t.co/WoXBujlsQU

[Joe Baber @JoeBaber1]

Take your vacation during Shark Week?! According to a University of Florida study, "The odds of being attacked by a shark in the U.S. are 3,748,067 to 1." Last year there were 24 unprovoked attacks in the US. Please help #ChildhoodCancer by letting people know that childhood cancer is not rare, but research funding specifically for kids is what's really rare. Maybe someday we can cancel Kids' Cancer!

[Joe Baber @JoeBaber1]

An easy and inexpensive way to spread awareness everywhere you go is to display a license plate that promotes #ChildhoodCancer Awareness. Order it now and have it by September and spread the awareness everyday, all year long! The Coalition Against Childhood Cancer has a listing of all states that offers them now or in the planning stages. Click Here > https://t.co/sKLuApv000

[Joe Baber @JoeBaber1]

Childhood rhabdomyosarcoma is a disease in which malignant (cancer) cells form in muscle tissue. Certain genetic conditions increase the risk of childhood rhabdomyosarcoma.
A sign of childhood rhabdomyosarcoma is a lump or swelling that keeps getting bigger. Diagnostic tests and a biopsy are used to diagnose childhood rhabdomyosarcoma.
Certain factors affect prognosis (chance of recovery) and treatment options. More information can be found at the National Cancer Institute, Click Here:> https://t.co/AMO4nCI2D2
#ChildhoodCancer

[Joe Baber @JoeBaber1]

Most people are not aware of Glioblastoma brain cancer. This tumor buries it's tentacles in the brain much the same way as a plant extends it's roots. Because of the damage that would be done to the brain, it's nearly impossible to cure this brain cancer surgically. Instead of removing a golf ball shaped tumor, the surgeon would be attempting to remove a tumor the shape of a jelly fish. Chemotherapy eats away at the cancer slowly and causes tremendous effects on the body. Radiation kills some but not all of the tumor. Glioblastoma is the most aggressive brain cancer and has challenging survival outcomes despite comprehensive treatment strategies. Typical survival for newly diagnosed patients is 12–15 months with a two-year survival rate below 30%. Jim retired in 2005 to Holden Beach, NC. from Dollar Tree Stores where he had a successful career as Director of Store Construction. He was a dear friend. He fought cancer very courageously. Six years into his retirement, he died at age 55. His heart was bigger than his body...
If you are inclined to donate to give people better chances to treat this cancer, I suggest donating to the National Brain Tumor Society. Donate today through July 17th and your donation will be doubled. Details available here: https://t.co/uDfaspsFV2

[Joe Baber @JoeBaber1]

This is legislation that all of us in the #ChildhoodCancer community can support. The recently introduced bipartisan Accelerating Innovation in Medicine for Kids with Cancer Act will leverage cutting-edge AI and data tools to transform pediatric cancer research, improve clinical trial design and access, and it will deliver more personalized treatment options for young patients. Stay tuned for more developments.
https://t.co/icYiRVtXhw

[Joe Baber @JoeBaber1]

Five years ago on the night of July 3rd, at 11:22 pm. the day before his favorite holiday, Jace Ward entered Heaven. Jace changed the image of DIPG Brain Cancer from being "rare" to being a "Priority." He was told he had only, at best, 9 months to live. He calculated he would miss his 21st birthday that he had planned on celebrating with all his friends and family. From that point on, he never wasted a precious minute. He traveled from coast to coast, spoke in Washington, DC on Capitol Hill and even addressed the National Institutes of Heath. His goal was to change the way people looked at DIPG. He always had a way of bringing people together. He was tough and never wanted DIPG to be only about Jace Ward. He named his organization for a principle he had acquired through his 22 years of life experiences and it formed the nucleus or core for all the people he met who were affected by DIPG and who wanted to cure it. He named it #Tough2Gether. Jace was being treated in a clinical trial at Stanford with infusions of CAR T-cells directly into his tumor. He was patient number two, patient number one had died. He entered his first treatment in a wheelchair and walked out of the hospital on his own. Along the way, at every opportunity, he gave the doctors and scientists critical information that would help younger kids like Mary Stegmueller (#MaryStrong) and others. Jace met Mary when she arrived for her first treatment. Jace had 5 treatments before he died of a brain bleed unassociated with his infusions. Mary went on to have 18 infusions of CAR T-cells directly into her DIPG tumor using a special catheter like Jace had done before her. Mary, like Jace, entered the clinical trial unable to walk unassisted. Later, she would be able to walk, run, and dance. The Stanford trial gave Mary 40 additional months of living life. Mary went to Heaven one month before her 8th birthday.

Jace Ward - #Tough2Gether has brought us all together with a sense of urgency and has inspired changes that are ongoing today in collaborations in awareness, advocacy, funding, data collection and research. #DIPG #ChildhoodCance

[Joe Baber @JoeBaber1]

July is Sarcoma Awareness Month. Today we honor Dalton Fox. I never had the opportunity to meet him, but his memories as related to me from his parents, have touched my life. Here are a few of the memories about this brave, courageous and wise young man.
Dalton’s smile and sense of humor were infectious. Even while fighting cancer, Dalton brightened every room he walked into. When the nurses asked him if he needed anything else, D would quickly reply, “20 bucks?” Dalton loved animals, especially lemurs and even had a lemur picture on "Larry," his prosthetic leg. When kids asked him what happened to his missing left leg, Dalton would smile and say “shark attack.” He even wanted to get a pedicure and see if he got half off. Baseball, fishing, swimming, watching Marvel movies, and sled hockey were some of our D’s favorite activities.
Dalton was a determined individual. He was selected as a safety patrol member and was scheduled to man his post on the first day of 5th grade. He told his mom on the day before his amputation, that he was going to attend the first day of school as a safety patrol. His mom wasn't sure if he realized he would be missing a leg. Dalton told us he was going to be there anyway, leg or no leg...and five days after being released from the hospital...he was there.
Ewing Sarcoma stole Dalton shortly before the end of 6th grade; he was 12 years-old.
The day before Dalton died, his mom and dad promised him that they would keep fighting Ewing Sarcoma to help kids like him. Will and Jen Fox founded D-Feet Cancer The Dalton Fox foundation (https://t.co/kWV7Rsvzwv) to raise awareness of this horrible disease and funds to find better treatments and someday a cure. 100% of donations and all net event proceeds flow directly to Ewing Sarcoma research in honor of Dalton and all who have fought and will fight this disease. #ChildhoodCancer #Sarcoma

[Joe Baber @JoeBaber1]

Sarcoma is a type of cancer that begins in bone or in the soft tissues of the body, including cartilage, fat, muscle, blood vessels, fibrous tissue, or other connective or supportive tissue. Different types of sarcoma are based on where the cancer forms. For example, osteosarcoma forms in bone, liposarcoma forms in fat, and rhabdomyosarcoma forms in muscle. Treatment and prognosis depend on the type and grade of the cancer (how abnormal the cancer cells look under a microscope and how quickly the cancer is likely to grow and spread). Sarcoma occurs in both adults and children. #ChildhoodCancer

[Joe Baber @JoeBaber1]

Following induction treatment for high-risk neuroblastoma, more than half of children experience cisplatin-induced hearing loss (CIHL), according to research published in JCO Clinical Advances. Platinum-based chemotherapy is a key treatment modality for high-risk pediatric neuroblastoma, but permanent damage to cochlear hair cells leading to hearing loss in frequency ranges necessary for communication is a known adverse effect, study investigators noted. Cisplatin delivered during induction is a principal driver of hearing loss — findings from the Children’s Oncology Group (COG) HRNBL trial A3973 showed that 71% of patients developed hearing loss following induction chemotherapy, and 29% required hearing aids. See more of the Cancer Therapy Advisor article here: https://t.co/iPMZiQhd0b

[Joe Baber @JoeBaber1]

This is a great opportunity to do three things to promote National Cancer Survivors Month.
1. Celebrate and praise our childhood cancer survivors, from which we get our HOPE.
2. Advocate for better treatments so future survivors won't have to constantly live in cancer's shadows of side effects of chemo and radiation.
3. Remember those who are not here to celebrate this month.
#ChildhoodCancer
Share your survivor's story, advocate at every opportunity, and remember those who did not survive.

[Joe Baber @JoeBaber1]

June is Lemon Month. Build a lemonade stand and help Alex's Lemonade Stand Foundation fund more great research to fight childhood cancer. This is a top organization that is nationally recognized for it's support of research for #ChildhoodCancer. For more details on how to set up a stand to support cancer research, click here https://t.co/fDDts0ffuG

[Joe Baber @JoeBaber1]

Whether or not you have a survivor or if your child was stolen by cancer, you are helping bring awareness to #ChildhoodCancer when you tell your cancer story. The more people who realize that kids cancer is not the same as adults and that it's really not that rare, the better chance we will be able to pass legislation to increase funding in the future. Wear a gold ribbon and tell your story... a good place to find supporting facts can be found here:
https://t.co/I2ZUKYXum6

[Joe Baber @JoeBaber1]

FRIDAY FACTS: Diffuse intrinsic pontine glioma (DIPG) is an very old thief. It's been stealing our best and brightest for decades. It still is considered an unmet medical need. About 350 children each year are diagnosed. This cancer rapidly steals children who are mostly between the ages of 5 and 9. It's cruel, it steals them one part at a time, piece by piece. DIPG steals their sight, it steals their ability to use their arms and hands, it steals their ability to walk, talk, swallow, breathe, one part at a time, all the while, the child has full cognitive abilities and knows what is going on. It has less than a 10% survival rate. 90% of those diagnosed will live 9 to 11 months. Moms and Dads are often advised to go home and make memories while they can. In our present decade there have been several clinical trials created on this inoperable brain tumor. While we are making progress, it's slow and not as fast as we wish, we need to keep spreading awareness for all childhood brain cancers. We need more research. Let your legislators know how important it is to provide adequate and consistent funding.

[Happy Quail @HappyQuailPress]

Gabriella💛
Lauren💛
Jace💙

Thanks, Joe, for sharing these 3 incredible people who gave so much… who inspire us to this day.
🎗️🎗️🎗️

[Joe Baber @JoeBaber1]

Today we honor three individuals who spread awareness from the time they were diagnosed with DIPG.
Lauren Hill was an American college basketball player. She gained national attention while battling terminal DIPG brain cancer (Diffuse Intrinsic Pontine Glioma) during her freshman year at Mount St. Joseph University in Cincinnati. SJU sold out attendance each time she played. She was 1st runner-up for 2014 Associated Press Female Athlete of the Year.
Jace Ward, after being diagnosed with DIPG transferred to Kansas State, became an advocate for DIPG awareness in our nation’s capital, visiting house and senate offices on Capitol Hill, and his mantra became, “I can’t die, I’m busy.” He spoke at the 2019 National Institute of Health Symposium on Genomic Data, advocating for patients to have control of their genomic data in order to seek treatments.
At 9 years old, Gabriella Miller was diagnosed with DIPG. Her tumor was the size of a walnut. By smashing walnuts with a frying pan while speaking to groups regarding the lack of research for DIPG, Gabriella quickly became a global advocate for children with cancer. Just before she died, she filmed a video interview urging Congress to "Stop talking and do something!" A bill was introduced, passed and and signed into law in only 4 months. The Gabriella Miller Kids First Act provided 10 yr., $150 Million for the Kids First Research program and Research Center. It has been very successful and has since been extended for another 5 years.

[Joe Baber @JoeBaber1]

May is Brain Cancer Awareness Month... Approximately 5.7% of ALL newly diagnosed brain tumors, including adults, occur under age 21. Childhood brain and other nervous system cancers are most frequently diagnosed among ages 5–9. Some childhood Brain cancers such as DMG and DIPG have survival rates of less than 10%. #BrainCancer #ChildhoodCancer