Written by Chris’ mom Amy:
And then our world was changed forever. We entered the world of cancer….
What then followed was a whirlwind of emotions, tests, scans, and blood work. Meeting with oncologists and surgeons, going to the clinic, feeling scared, angry, depressed and sad. How did we get here???!!!!
Chris’ Crew on Facebook
Dr. Charles Roberts has a photograph of Mary Eisnor hanging in his office so he never forgets what he’s fighting for.
Mary, whose family lives in Bridgewater, died in 2010 at the age of 8 of hepatoblastoma, a form of liver cancer.
Roberts, an associate professor in the department of pediatrics at Harvard Medical School and in pediatric oncology at Dana-Farber Cancer Institute, attended Mary’s funeral.
“Every time we lose a patient to cancer it makes us want to go back and work that much harder,” Roberts said.
Roberts spends about 80 percent of his time running a research lab and 20 percent taking care of the kids who stand to benefit from that research.
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But we are only just beginning to understand how the human body works at the genetic level, Roberts said.
“It’s an incredibly complex choreography,” he said.
Roberts compared cancer to typos in a book – only the stakes are much higher.
“The mistakes that happen in genes are causing kids to die,” Roberts said.
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Roberts said childhood cancer research could absolutely benefit from more funding.
Pharmaceutical companies generally don’t focus on childhood cancer because there is not a large return on their investment, he said. That is due to the fact that – fortunately – childhood cancer is relatively rare, Roberts said.
Research companies also tend to be a little reticent to test drugs on children, so drugs tend to be tested on adults first, but the people developing treatment protocols for children are pediatric oncologists familiar with the unique needs of young patients, Roberts said.
The Symmes family knows what it’s like to lose a child to cancer. So in honor of being Pediatric Cancer Awareness Month, the family is putting on several fundraisers to help reach their goal of $8 million.
The Pink Label Event is one of their most successful fundraisers. Local boutiques donated brand new items to be sold at a reduced price. Others donated gently used items as well.
All the money raised will go toward the Caroline Symmes Endowment for Pediatric Research.
Caroline died when she was 5. She had a passion for fashion and loved the color pink. Her mom Libby says she will still fight for other kids.
“When you’re told by your daughter’s doctor that she’s going to die because they can’t do any research. They have no resources then that strikes you and you have got to help other families because we lost Caroline to a disease that should have been treatable,” said Libby Symmes.
Cancer is one of the leading killers of children in America. More than 20 percent of pediatric cancer victims do not survive. Riley Hospital for Children agree that research could benefit these children. They’ve teamed up with the Symmes family to help with funding for a research center through federal funds.
“Riley and the researchers and clinical physicians are able to take those dollars and broaden that for national research grants take that money and make it much larger in this effort,” said Jason Mueller of the Riley Children’s Foundation.
The Symmes family says they can’t reach their goal without corporate sponsorships. But in the meantime they’ll keep raising funds through unique ideas like the Pink Label Event.
To learn more about the Caroline Symmes Endowment fund, click here.
Find out how you can help out Alex’s Army’s Pillowcase Projects.
Details under How To Help > Prayer Pillowcase Project
Markell is known as “Mr. Hollywood” – he is a 15 year old boy diagnosed with Osteosarcoma, with an unstoppable creative spirit and passion for life among all of his adversity. From the creators of My Last Days, Unstoppable is a four-part series in partnership with St. Jude Children’s Research Hospital in Memphis, Tennessee that profiles the strength and unstoppable spirit of their young patients.
A new protein-linked dye derived from scorpion venom that lights up cancer cells so surgeons can precisely target brain tumors will get a trial run in the U.S., Blaze Bioscience Inc. officials announced Thursday.
Food and Drug Administration officials have approved an investigational new drug application, or IND, for Tumor Paint BLZ-100, a molecule discovered and first developed by researchers at Fred Hutchinson Cancer Research Center, Seattle Children’s Hospital and the University of Washington.
“I think it really is a dream come true – to be outdone only by seeing these cancers light up in patients,” said Dr. Jim Olson, a Fred Hutch pediatric brain cancer expert who pioneered the notion of targeting tumors with fluorescent dye to help surgeons distinguish healthy cells from malignancies.
You’re probably familiar with the term “clinical trial.” And if you or someone you care about is a patient at Memorial Sloan Kettering, it’s even more likely you’ve heard the phrase before, since these studies have played an integral role in the fight against cancer.
By definition, a clinical trial is a research study that tests a new medical approach in a group of people to make sure it is safe and effective. All of the drugs used to treat people with cancer today were developed through a series of carefully constructed clinical trials.
We conduct one of the largest clinical research programs in the world. In 2013, our physicians led more than 1,200 clinical research studies for adult and pediatric cancers.
“We learn from all of these studies, which build upon each other and ultimately lead to new discoveries and improved treatments for patients,” says medical oncologist Paul Sabbatini, Deputy Physician-in-Chief for Clinical Research at MSK.
The first step in testing a new drug in humans is called a phase I trial. These studies offer eligible patients the chance to try an innovative treatment that in most cases has some preclinical data suggesting it might have activity against a particular type of cancer.
In this Q&A, Dr. Sabbatini sheds light on how phase I clinical trials are conducted at MSK and how to determine whether patients may be eligible for one. Stay tuned to our blog next month for a second post, in which he will demystify common misconceptions surrounding clinical trials.
The team didn’t give up on Still or his family, inviting him back to the team’s practice squad. It gave him money, health insurance and the time he needs to help his little girl.
But the community also rallied around the Bengals player.
Devon Still’s football jersey went on sale to raise proceeds for pediatric cancer research. The money goes to Cincinnati Children’s Hospital Medical Center, ranked among the top medical centers for childhood cancer research in the country, according to the U.S. News & World Report.
At a price tag of $100, Still’s No. 75 is the fastest-selling jersey in team history. As of Sept. 12, roughly 40,000 jerseys were sold to raise money for pediatric cancer research. That’s nearly $400,000 for pediatric cancer research in just four days.
Sales continue to soar.
As fans and supporters of Still and his family started receiving their jerseys, they noticed a personal note from the player inside, thanking them for their support.
The note read:
“I want to thank you for supporting my family and my daughter Leah through your generosity. It means a lot to me, and it means a lot to families fighting cancer in Cincinnati and across the country. Thank you for giving — we appreciate it more than you know.”
The music icons team up with TODAY’s Hoda Kotb to record a special anthem to help raise money in the fight against pediatric cancer.
More about the video and fundraiser.
Making of the mash up.
They are the “momcologists,” a nickname for the moms — and dads! — who know the horrific toll cancer takes on families and have dedicated their lives to helping others.
“We are every day moms all of a sudden thrown into this crazy cancer world and have to learn everything,” said Sherwood, 42, of Marlboro, New Jersey. “I probably know more than the average pediatrician about cancer.”
These parents have raised millions to find cures, helped families cope with the blow of a new diagnosis and offered financial support for lost wages, hotels during grueling treatments and sadly, for funerals.
For some, the work lasts long beyond the diagnosis, continuing the fight after a child is cancer free and even after a child has died.