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Seven-year-old Vinny Desautels learned about cancer for the first time because his mother, Amanda Azevedo, was helping survivors of the disease get ready for a gala. She is a hair stylist who volunteered with a local lymphoma foundation, doing the hair of former cancer patients before they arrived at an annual benefit event.
As Azevedo was leaving one year, Vinny asked, “Hey Mom, what are you doing?”
She explained to her youngest son, as best as she could, the ruthlessness of cancer. Fighting the disease often meant losing your hair, Azevedo said, and this was a tough outcome, particularly for young women. She was just doing something small to help.
Hearing this, Vinny wanted to help, too. “Can I grow my hair out?” he asked.
For the next two years, the Roseville, Calif., kid with a toothy grin sported long brown locks that invited teasing on the playground. “He was mistaken for a girl many times,” his father, Jason Desautels, chuckled in a phone interview with The Washington Post late Monday. “He always took it like a champion.”
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The Poseys plan to help raise money and awareness for pediatric cancer research and will appear together at a Wednesday news conference at AT&T Park to announce the focus of their philanthropic efforts.
“Kristen and I have been blessed with two healthy kids and the opportunity to contribute to the community in a meaningful way,” Posey said in a statement.
The Poseys plan to focus on awareness, fundraising and patient/family support, and will work with the Giants to organize activities and host events at the ballpark.
“We were shocked to learn that only about 4 percent of cancer funds raised throughout the country are dedicated to pediatric cancer research,” Posey said, “and we felt compelled to lend our voices to this important cause.
“Our hope is that by working with the doctors, patients and their families, we can raise significant awareness and funds for pediatric cancer research and treatment.”
The Poseys will partner with ESPN broadcaster Dick Vitale, an advocate in the fight against pediatric cancer, for a Sept. 14 fundraiser at the ballpark that will benefit the V Foundation and Bay Area pediatric cancer programs.
The Poseys will host another event Sept. 17, the Giants’ Pediatric Cancer Awareness Day.
On Wednesday, New Era will unveil the Buster Posey Pediatric Cancer Awareness 9FORTY cap, the proceeds of which go to support research and treatment. The cap features the gold ribbon for Pediatric Cancer Awareness and the Giants’ logo.
Once a month, the Poseys will host patients receiving treatment at Bay Area hospitals and their families, who’ll be invited to a game as well as a pregame visit with the Poseys.
Battling cancer takes a lot out of a person’s health and overall well being. A new study shows that adults who have survived cancer during childhood feel older than their age, and generally have lower quality-of-life scores when it comes to health.
Dr. Lisa Diller, chief medical officer of Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, is the senior author on the study. She says, “Our findings indicate survivors’ accelerated aging, and also helps us understand the health-related risks associated with having had cancer as a child.” Diller adds, “What’s encouraging is that the lower quality-of-life scores are associated with chronic disease after treatment, not with a history of pediatric cancer itself.”
As per UPI’s report, the research team gathered data from pediatric cancer survivors in the USA. Overall quality-of-life scores in relation to health were found to be similar among the age demographics of 18-29 years old and 40 years old.
Patients who had experienced more chronic health problems after surviving cancer tended to have lower quality-of-life scores. Referencing another study on childhood cancer survivors, Diller and her team found that only 20% of 7,000 respondents had no chronic conditions.
Studies have shown that cancer survivors are at high risk for heart disease, other forms of cancer, infertility, lung problems, autoimmune diseases, and other similar chronic conditions. These risks are primarily associated with cancer treatment methods such as radiation, chemotherapy and surgery.
Diller goes on to explain that her team’s findings provide a concrete comparison between adults who have survived pediatric cancer and the general population, in terms of quality of life.
“A while ago, I wrote that “uncertainty is the refuge of hope”. The corollary to this is that certainty is the end of hope. Well, now we have certainty. Daniel will die from osteosarcoma, probably fairly quickly. Any hope I had after his relapse is gone.
In the five weeks since his surgery Daniel has grown a 3 cm inoperable tumor (inoperable due to location) and malignant pleural effusion (essentially liquid osteosarcoma) around one lung. There is also a suspicion of “several” tumors on his pleura, although this is not completely clear.
Sara and Daniel and I have had some horrible, difficult conversations. I know of no good way to tell a 13-year-old child who desperately wants to live that he is going to die. And I know of no good way to tell a 17-year-old about her brother’s impending death.
I have also had some horrific conversations with Daniel’s oncologist about the exact mechanics of how he will likely die, how much medical intervention to practice, and how much time he might have left and how to make this time as comfortable as possible given a disease which is brutally painful and savage. I signed my child up for hospice. I hope you never, ever go through these conversations or experiences.
Daniel, Sara and I are figuring out right now how to go through this period. Prayers, good thoughts and wishes are all appreciated. We will figure out how to let everyone know how you can help if you’d like, and how we will be taking visitors. Please give us some space and time to figure this out — something which should never need to be figured out. Be gentle with us as we walk down this deeply lonely and desperately grieving path which I would not wish on any family.
And please understand that I do not wish to hear that Daniel will be in a better place (what better place is there than home with his sister and mother who love him deeply?), I do not wish to hear that at least his suffering will be over (my child — no child — should suffer this way), I do not wish to hear that God gives his biggest battles to his strongest soldiers (my child is not a soldier — he is a child) or anything similar. Daniel will not be gaining his angel wings. Daniel will die. The end. His heart will stop pumping, his lungs will stop working and his brain will stop processing. He will die. My beautiful, courageous, insightful, loving child will die. And his sister and I will grieve his loss for the rest of our lives. We will love him forever and remember him forever. I will always be the mother of two beautiful, wonderful children. And Sara will always have a younger brother.
And please remember that Daniel will die because we, as a society, do not deem the leading cause of death by disease for our children something worthy of reducing. We are “OK” with the fact that had Daniel been diagnosed 30 years ago with osteosarcoma (the most commonly occurring primary bone cancer which primarily affects children and young adults), the drugs he received and his entire treatment would have been EXACTLY the same, and the outcome would have been EXACTLY the same. We are “OK” with the thousands of children who die each year from cancer. And this year, that number will include my Daniel. My precious, beloved Daniel. Please remember him and us in your thoughts and prayers.”
Original Facebook Truth365 post here.
Cancer is the leading disease-related cause of death in children in the United States. Yet pediatric cancer is often left behind when it comes to funding research and developing new drugs. Not only does this give short shrift to children with cancer, but it also threatens to rob us of advances that could benefit cancer patients of all ages.
That’s what I and fellow members of the Coalition for Pediatric Medical Research told the staff of Vice President Joe Biden, who is leading the cancer “moonshot.” We recently met in Biden’s Washington office to make the case that childhood cancer must be represented as the government considers ways to propel cancer research.
Six decades ago, the first major breakthrough in the treatment of cancer came when Dr. Sidney Farber used an experimental drug to treat leukemia in children. Some went into remission — a medical first. Chemotherapy was born, revolutionizing the care of both children and adults with cancer.
Since then, overall cure rates for childhood cancers have risen to 80 percent. Some pediatric cancers post cure rates of 90 percent, while others remain difficult or nearly impossible to cure. At the same time, a majority of childhood cancer survivors experience harmful, lifelong complications of the treatments that saved them. Such late effects can be far more devastating to the survivor diagnosed at age 5 than the survivor diagnosed at age 65.
Silicon Valley billionaire Sean Parker will donate $250 million to launch a new institute aimed at developing more effective cancer treatments by fostering collaboration among leading researchers in the field.
“Any breakthrough made at one center is immediately available to another center without any kind of IP (intellectual property) entanglements or bureaucracy,” Parker, the co-founder of music-sharing website Napster and the first president of Facebook, told Reuters in an interview.
The new Parker Institute for Cancer Immunotherapy will focus on the emerging field of cancer immunotherapy, which harnesses the body’s immune system to fight cancer cells.