Category Archives: Pediatric Cancer

“The End of Hope” by Theresa Beech via Truth365

“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.

Children’s cancer research is often ignored. Make it a ‘moonshot’ priority

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.

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Sean Parker Donates $250 Million to Launch Cancer Immunotherapy Institute

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.

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VA High School Plans Prom to Benefit Cancer Research

A high school in Loudoun County, Virginia, plans to throw a prom with a message this year.

While the students at Freedom High School in South Riding still plan for a fun party, they are scaling back in exchange for giving back.

“We were just bouncing themes around and we had the idea of a charity ball, and it took off from there,” Junior Class President Bobby Doherty said.

The money saved and generated from ticket sales will go to pediatric cancer research.

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College basketball coaches to wear gold shoelaces in honor of Lacey Holsworth

College basketball coaches across the country will be switching up their shoelaces this week to honor one of Michigan State’s biggest fans.

Special gold shoelaces will be worn by coaches this week to honor Lacey Holsworth, the St. John’s native who formed a relationship with Adreian Payne and the Michigan State basketball team before passing away due to cancer in 2014.

The promotion is part of the Suits and Sneakers Week, in which coaches wear sneakers instead of dress shoes to benefit Coaches vs. Cancer and the American Cancer Society. Funds raised will also benefit Princess Lacey’s Legacy, a nonprofit foundation founded in her honor.

Wisconsin, South Carolina, Akron, La Salle, Dayton and Appalachian State have all announced that they will wear the laces during games this week.

Gold laces are also available to the general public through Shoe Carnival.

Original Article

That Dragon Cancer, Video Game

That Dragon, Cancer is a video game. The autobiographical game is based on the experience of a family raising their son Joel, who was diagnosed with terminal cancer at twelve months old, and though only given a short time to live, continued to survive for four more years before eventually succumbing to the cancer in March 2014. The game is designed to have the player experience the low and high moments of this period in the style of a point-and-click adventure game, using the medium’s interactivity and immersion to relate the tale in ways that a film cannot.

http://www.thatdragoncancer.com

President Obama Puts Joe Biden in Charge of Curing Cancer

President Obama announced Tuesday in his final State of the Union that Vice President Joe Biden would spearhead an initiative to cure cancer.

“Last year, Vice President Biden said that with a new moonshot, America can cure cancer,” Obama said, before noting that Biden has worked with Congress to add resources for the National Institutes of Health. “Tonight, I’m announcing a new national effort to get it done. And because he’s gone to the mat for all of us, on so many issues over the past forty years, I’m putting Joe in charge of Mission Control. For the loved ones we’ve all lost, for the family we can still save, let’s make America the country that cures cancer once and for all.”

This comment got enormous applause, as the President turned to Biden and went off script, saying, “What do you say, Joe?” Biden gave him a thumbs up, to more applause. “Let’s make it happen,” President Obama said.

Vice President Biden lost his son, Beau Biden, 46, to brain cancer in 2015.

Original Article

How One Alaska Mom Is Bringing ‘A Little Magic’ To Kids With Cancer

With the generous support of people in her community and beyond, an Alaska mom is bringing a touch of magic to the lives of young cancer patients through beautiful and whimsical “princess” wigs, all made painstakingly by hand.

The story of these wigs began last year when Holly Christensen got news that her friend’s 3-year-old daughter, Lily, had been diagnosed with cancer. A former oncology nurse, Christensen says she was deeply grieved for the child.

“I knew having been a cancer nurse what she was about to go through,” the 31-year-old mom of three told KTVA.com.

There was, she knew, much suffering ahead for Lily, who was going to undergo chemotherapy. “She’s such a girly girl and loves princesses and [was] about to lose her long beautiful hair,” Christensen, who lives in Palmer, Alaska, told ABC News.

That’s when Christensen says she got the idea to create a special handmade wig for Lily: A Rapunzel-inspired braided style made out of very soft yellow yarn.

Chemotherapy can leave a child’s skin “very tender and sensitive,” making wearing traditional wigs uncomfortable, Christensen explained. The wig she created for Lily was made on an extra-soft crocheted beanie.

“I knew she would be going through a difficult time, and that no one would be able to take her suffering away,” Christensen told Babble. “I also knew that losing her long, curly blonde hair at not even 3 years old would be difficult for her, so I figured that the yarn wig could help bring a little magic and fun to a difficult time in her life.”

Lily is said to have immediately fallen in love with the wig. She would stroke the yarn, Christensen said, and would talk about a time when she would get her “real ‘Rapunzel’ hair” back. It made her “feel like the beautiful princess she is,” said the mom.

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4-year-old cancer survivor dresses as herself for ‘Superhero Day’

Josie Kimberlin is one 4-year-old who knows what real superheroes are made of.

They aren’t composed of muscles made of steel, or men flying around in the sky, or even women with impossibly tight leather suits. Instead, real superheroes are made of courage, bravery, and kindness. All of which this one little girl has displayed before she even entered kindergarten.

And the best part is — she completely knows her own strength.

Diagnosed in 2013 with acute lymphoblastic leukemia, Josie went into remission nine months after her cancer was discovered. So the night before “Superhero Day” at school, Josie’s mother, Alyssa Butler, encouraged her daughter to dress up as herself instead of a classic superhero. Butler told The Huffington Post:

“We were going through her closet the night before and she didn’t really have anything with any kind of superhero stuff on it, so I asked her, ‘Do you just want to go as yourself? Because you know you’re mommy’s superhero. And she just kind of ran with the idea and she loved it.”

Butler explained to Babble that she told Josie that she was her hero and how brave she was.

“She smiled, lit up with a glow that could light the night sky, put her hands up, and acted like she was flying! She felt awesome – she is my hero, and we want to show the other kids battling cancer and disease how strong they are. How they aren’t alone fighting, how they are their own superhero.”

According to her Facebook page, Josie’s Journey, strength has been a common theme in the family’s experience with cancer.

“My daughter has shown me how strong a child really is, how smart a woman really can be, and how easy my heart is broken. The day I heard the news of my angel having cancer, I completely lost it. Shortly after, I looked at her sweet smile and realized that I have to stand up be a stronger mother.”

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Fighting Childhood Cancer Until There's a Cure!