Welcome!

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Welcome to Four Square Clobbers Cancer!

foursquarecourt2.jpgFour-Square Clobbers Cancer is a conversational blog that is dedicated to improving the outcomes of children, adolescents, and young adults who are being treated or have been treated for cancer.  The goal is to inform, communicate and collaborate with those in the cancer community.

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Four-Square is a very popular game played by children, adolescents and even young adults.   Following the rules and reacting to the constant changing path of a big orange ball, the object is to stay in the game as long as possible.  It’s kind of like the game of life,  where the object is to react favorably to the fast, changing  things that come your way,  stay healthy, live as long as possible and have fun.

Four-Square by definition is also used as an adjective that means firm and resolute, especially in support of someone or something.  “We stand four-square in our conviction to improve the therapies and outcomes of children, adolescents, and young adults with cancer.”bounceball

Clobber is actually a term used in the game of Four-Square and,  coincidently, it means the same thing in the game of life.  It’s what everyone wants to do to cancer!

Complete information about Four Square Clobbers Cancer and it’s bloggers can be found by clicking the “About” tab on the menu bar at the top of the page.

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Recently heard the words,”Your child has cancer?” Please read this:

BestCare_edited-1If you found this site because you have recently heard, “Your child has cancer,” this article is a must read if you are trying to decide, “What next?”  The advice given is invaluable and will help you on your journey down this uncertain road.

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

$30 Million for AYA Cancer Research

 

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URGENT! Rally Foundation is leading the effort to get approval again for $30 million in AYA Cancer Research.  THIS IS URGENT!    Your help is needed!

What is a CDMRP and why do adolescents  and young adults need it to fight their cancers?

The Department of Defense (“DoD”) Congressionally Directed Medical Research Program’s (“CDMRP”) mission is to target critical gaps and transform healthcare through groundbreaking biomedical research in response to its stakeholders—the American public, the military and Congress. The National Institute of Health (“NIH”) defines adolescent and young adults (“AYAs”) as persons between the ages of 15-39 years old. The #1 disease killer of AYAs and children is cancer.  According to the U.S. Census Bureau, the AYA and pediatric populations comprise more than half (53%) of the American public. According to the DoD, 2.1 million AYAs make up 86% of the active population serving in the U.S. military. When you factor in their spouses and children, more than 90% of America’s active military members and their families fall into the AYA and pediatric population.

According to the NIH, AYA and pediatric cancers are significantly under-researched, leading to poor outcomes including high morbidity and mortality. The CDMRP  $1 billion budget features line items for prostate cancer, ovarian cancer and lung cancer totaling $110 million, for these cancers, with a median diagnosis age of 66 years old.  The median age of AYA and the pediatric population fighting cancer is 20 years old.  The average age of children dying from cancer is 8 years old, and they lose an average of 71 productive life years.  ActiveMilitary

The DoD CDMRP is in the unique position to make groundbreaking, transformative discoveries that positively impact the healthcare for 90% of our nation’s active military forces and 53% of the American population, filling the critical gap by investing in research for cancers that specifically affect AYAs and their children. The NIH says there is a need for basic science, epidemiology and clinical trials to improve survival rates for AYAs and children fighting cancer. The Defense Appropriations Subcommittee  was asked to  approve a CDMRP  to include a $30 million line item specifically for Peer-Reviewed Young Adult, Adolescent and Pediatric Cancer Research. This was approved for 2017 for the first time, and approved again for 2018, 2019 and 2020. Applications are in the process now for 2021. You can help get this approved for 2021!  Click Here!

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Updated 6/24/2020

 

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Kids First 2.0

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Congresswoman Jennifer Wexton (D-VA-10) introduced the bipartisan Gabriella Miller Kids First Research Act 2.0 (HR 6556) which would redirect penalties collected from pharmaceutical companies that break the law to critical rare pediatric disease research. Representatives Tom Cole (R-OK-04), Peter Welch (D-VT-At Large) and Gus Bilirakis (R-FL-12) joined Wexton in introducing the legislation.

“We can do better for our kids,”

412834-200px“There’s an urgent need to fund more research for childhood cancer—We can do better for our kids,” Congresswoman Jennifer Wextonalso said,By redirecting the penalties from pharmaceutical companies that break the law, we can fund lifesaving medical research.  I am proud to be teaming up with Smashing Walnuts, Rep. Peter Welch, Congressman Tom Cole, and Rep. Gus Bilirakis to introduce the bipartisan Gabriella Miller Kids First Research Act 2.0 to help carry on the fight against devastating childhood illnesses.”

“Today, Congresswoman Wexton is DOING something wonderful for children who suffer from cancer and other debilitating diseases.

22815151_1551000391588773_7741191359098391037_n“My daughter Gabriella called upon our elected officials to “stop talking and start doing” two weeks before she died of brain cancer at the age of 10,” said Ellyn Miller, Founder and President of the Smashing Walnuts Foundation. “Today, Congresswoman Wexton is DOING something wonderful for children who suffer from cancer and other debilitating diseases.  Building off the great success of the first ‘Gabriella Miller Kids First Research Act’, Rep. Wexton’s bipartisan legislation brings additional funding for much needed research for childhood cancers and diseases. My heartfelt thanks to all the Members of Congress who have joined together to support the search for better treatments and cures for our children.”

We need your support!

SignUPclickWe need to get as many Childhood Cancer and Rare Diease organizations to help show support for this 2.0 version of the Gabriella Kids First Research Act.  We need to show other Representatives in Congress that there is a real need. To show that your organization supports this bill please click here: SUPPORT

“Establishing the Gabriella Miller Kids First Research Fund was an important step to412239-200px help children battle rare cancers,” said Congressman Peter Welch, an original cosponsor of the 2014 bill that first established the fund. “This new legislation will make sure that fines levied against Pharma’s bad actors will be put towards a good cause—researching cures to these terrible childhood cancers. I hope that Congress can once again put down the partisan battle axes to give children a better chance at beating these brutal diseases.

Fines levied against Pharma’s bad actors will be put towards a good cause.

400077-200px“I have long been a proponent of medical research especially for illnesses and diseases that affect our most vulnerable,” said Congressman Tom Cole. He was an original cosponsor on the Gabriella Miller Kids First Reserch Act in 2014.  I am proud to be cosponsoring “The Gabriella Miller Kids First Research Act 2.0 which would expand funding for childhood diseases by redirecting monetary penalties levied against pharmaceutical manufacturers toward valuable research. By doing this, we can hopefully uncover links between childhood cancer and birth defects and save the lives of children. I am proud to be a co-sponsor of this important piece of legislation.”

“Children have significantly fewer treatment options than adults.”

“Pediatric cancer remains the number one disease that leads to the death of American children. While survival rates have improved for some types of pediatric cancers, thousands of children are lost to cancer each year and many more encounter life threatening complications related to harsh chemotherapies. Children have significantly fewer treatment options than adults and oftentimes must rely on treatment regimens developed for adults because pediatric-specific treatments simply do not exist for many pediatric cancers and rare diseases. The Gabriella Miller Kids First Pediatric Research Program at the National Institutes of Health (NIH) is working to develop a large-scale data resource to help researchers uncover new insights into the biology of childhood cancer and structural birth defects, including the discovery of shared genetic pathways between these disorders. This 412250-200pxfoundational research is critical for facilitating a better understanding of pediatric cancers, and holds the promise for the development of better treatments and possible cures. As a longtime advocate for children and rare disease patients, I am proud to join my colleagues in pushing for the continuation of this crucial research,” said Congressman Gus Bilirakis.

In 2014, Congress passed the Gabriella Miller Kids First Research Act which established 2014-04-05 12.14.13 pmthe Ten-Year Pediatric Research Initiative Fund and authorized $12.6 million in annual funds for childhood disease research, including important areas of emerging scientific opportunities, rising public health challenges, and knowledge gaps. Since it was enacted, the bill has provided $75 million to childhood cancer and disease research.

Wexton’s legislation provides a new source of funding for the Kids First Research Program, as funding will expire in Fiscal Year 2023. This new source of funding is expected to be exponentially larger and does not have an end date.

The Gabriella Miller Kids First Research Act 2.0 would redirect penalties levied against pharmaceutical manufacturers by the U.S. Securities and Exchange Commission (SEC) for violating the Foreign Corrupt Practice Act (FCPA) towards the Kids First Pediatric Research Program (Kids First) at the National Institutes of Health (NIH). There have been consistent and large civil sanctions leveraged against pharmaceutical companies since 2013 – hundreds of millions from six violations. With this legislation, penalties from pharmaceutical companies that break the law would be channeled directly to critical medical research.

GMKFAFatedGraphicKids First funds much-needed research on rare childhood cancer, birth defects, and other rare pediatric diseases. Currently, only 4% of the National Cancer Institute’s $4.9 billion budget goes towards development of cures and treatments for childhood cancer. Cancer is the single leading cause of death among American children of any disease, and approximately 16,000 kids are diagnosed with cancer each year in the United States However, in the past 30 years, only 4 drugs have been developed to treat cancer in children exclusively. Childhood cancers differ from those found in adults in that they do not stem from lifestyle or other common risk factors. Many children with cancer do not respond well to conventional treatments, which have resulted in long-term health and disability issues for patients, even if successful in curing the cancer.

Congresswoman Wexton worked closely with Ellyn Miller, a constituent and founder2014-09-03 05.15.42 am of Smashing Walnuts based in Leesburg, to introduce the Gabriella Miller Kids First Research Act 2.0. The foundation was established in 2013 after Ellyn and Mark’s daughter, Gabriella, was diagnosed with an inoperable brain tumor. Gabriella passed away in 2013 at age 10. She is the namesake for both the 2014 bill and the legislation introduced today by Congresswoman Wexton.

 

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Think about others

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Does this coronavirus scare you? I’m concerned because I’m one of those you have heard about. I’m in the “most vulnerable group” (MVG). I’m retired, a grandparent and will be 75 in a few weeks, a congestive heart failure patient for the past 20 years, and on top of that, I have about 50% lung capacity.  Sure I’m concerned, you won’t catch me out of my house or yard unless it’s a real emergency!  So all of us in the “most vulnerable group” to be safe, should do like I do and stay home right? WRONG! 

A lot of people don’t realize it, but the folks in my MVG group are not the only ones that need to worry.  The ones most people don’t think about are those who, regardless of age, have an underlying health problem or a compromised immune system.  If someone is being treated, or has been treated for cancer, this covid-19 virus could kill them!

As I said, I am concerned, but what really scares the hell out of me is what could happen to kids! I am a childhood cancer advocate and this is a very dangerous time.  Because there is a general belief by the public that children are not very much affected, for kids who have been or are fighting cancer, they are the ones who are really in danger. The children and their grandparents are dependent on everyone else to also follow the CDC guidelines, and government directives to keep from spreading the virus. We all have a responsibility to each other. Our actions, or lack of appropriate actions, could kill a child or their grandparent.  We all share a responsibility to keep each other safe even those we don’t know. Act as though you are a MVG member, or all your loved ones, friends and neighbors are MVG’s too. 

Read this Facebook post by a mom with two young children, one has fought cancer and is scheduled to have his port removed this month. This tells is all…

84863141_10157625517410923_4238928748860145664_nAlmost one-year-ago, in April of 2019, our then five-year- old, Tucker, was diagnosed with a cancerous brain tumor and we did not know if he would survive. The ONLY priority we have had over the past year is to save Tucker’s life. We have sacrificed everything and anything to keep him healthy – as I imagine you would also do for your own child if you were ever in this situation. 

So why aren’t you doing it now? Does it take almost losing your child to really understand that nothing is more important than life itself? 

I don’t care about going to the beach. I don’t feel bad that my kids don’t get to hang out with their friends or play sports right now. I could care less that every single plan I had in my calendar is now postponed. Because all of that is a temporary inconvenience to come out of this ALIVE! And by the way, you are LUCKY if this is just temporary! So many children are battling cancer for the second, third, fourth time…

Virus6CDCAdam and I are both working 40 hours from home while home schooling our children without the normal help of my mom – in order to keep her and us, safe! It’s hard as hell but it’s easier than watching them get sick and possibly die. I saw a picture of neighbors in a neighborhood down the street from mine hanging out in their small driveway while all their kids played together. I wish I could be that ignorant. Cancer changes you forever. 

I would not wish the journey we’ve traveled this past year on any one of you. We’ve survived it intact but our hearts are forever with those we know who didn’t (including three children who have died from their cancer this past month). So please stop trying to live your best or even normal lives right now! I know it’s hard to shift gears when your own family seems healthy. I swear to you that until you almost lose a child or do lose a child – you can’t begin to understand the overwhelming grief that lives within you every single day. But if you need someone to remind you why you should take this seriously and stay home – think about Tucker!

 

Author: Joe Baber with Kelly Mika Tucker Davis

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Color A Car

ColorACar_edited-1Most kids are out of school. Joe Gibbs Racing Facebook page recently asked kids to color a car and post it on Facebook. We thought it was a great idea and wanted to extend it to kids fighting childhood cancer. We added a Gold Ribbon to the car. You never know, if enough kids color it and post on FaceBook, we may convince them to put a gold ribbon on each of their cars in September during Childhood Cancer Awareness Month. Below are templates you can download and color.

Download your car choice and use suggested hashtags for each. Color it as you like. Post on Facebook, and or tweet to your friends. 

If you do not have scanner, take a close up photo of your child’s car and post that!

Tag in Facebook Post: @Joe Gibbs Racing, @Toyota Racing, @Motorsports Go Gold

Twitter Hashtags – #GoldRibbon #forthekids #ChildhoodCancerAwareness

Tweet to: @Joe Gibbs Racing, @Toyota Racing, @Motorsports Go Gold

Click on car to download a PDF

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Researchers Round Up

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RESEARCHERS ROUNDUP

Ten years after a young, bright, athletic Texas teen died from brain cancer, his last wishes to help others fight cancer were celebrated by some of Texas’ best childhood brain cancer investigators.

Texas has a very unique model that promotes research in childhood cancers. Recently, in Dallas, Texas on  January 12, 2020, on the eve of the 10 year anniversary of young Carson Leslie’s death, his mother, Annette, and Texas’ $6B CPRIT  with the  Carson Leslie Foundation launchd Researchers RoundUp (RR), a gathering of Texas’ brightest ResearchRoundUpVideo_edited-1childhood brain cancer investigators.   Over 50 researchers attended a two day event to facilitate innovative discussions about the big problem of childhood brain cancer, the deadliest disease of our nation’s children.

 

In 2007, Texas voters approved a constitutional amendment establishing CPRIT, authorizing the state to issue $3 billion in bonds to fund groundbreaking cancer research and prevention programs and services in Texas.

In 2010, CLF was launched to honor Carson’s last whispered wishes, “Make sure they study those tumors in my brain because if those tumors can help some kid someday not die from cancer like I am, I’d like that.”

On a quest to honor her son’s whispered wishes, Annette Leslie, Carson’s mom, sought trailblazers, influencers, principals and mentors for advice and guidance in the space known only to her through her son’s fight for life. A few months after Carson’s death, Annette was invited to serve on CPRIT’s, Advisory Council on Childhood Cancer (ACCC). Now, surrounded by experts in oncology, Mrs. Leslie attended every CPRIT meeting possible, talked about childhood cancer every chance she had, and told Carson’s story to anyone who would listen.

“Annette Leslie was invited to join CPRIT’s Advisory Council on Childhood Cancers and through her advocacy, CPRIT has expanded its role in pediatric cancer.”  Tom Luce, CEO Texas 2036

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Wayne Roberts, CPRIT CEO and Annette Leslie, CLF Founder at CLF annual GOLDEN TOAST in Washington, D.C.

“We named CPRIT’s conference room after Carson to honor his memory and to inspire us with a tangible reminder of the courage and hopefulness he showed in his fight against cancer. CPRIT has made childhood cancer a priority. Our increased grant support is intended to accelerate progress for prevention and research of pediatric and adolescent cancers, and to help Texas become a global leader in childhood cancer research.” Wayne Roberts, CEO – CPRIT

A more narrowed focus on childhood brain cancer was of interest to CLF so the Board Directors met with CPRIT and together launched RR which will be held on the ten-year anniversary of Carson’s death. “Working collaboratively with likeminded organizations is how massive problems are solved. Creating RR with CPRIT and launching the RoundUp on the ten-year anniversary of Carson’s death is a perfect way to honor Carson’s valiant fight for life and last whispered wishes.” Annette Leslie, Founder – CLF

“I am particularly enthusiastic because the Researchers RoundUp represents a potential model for how the CPRIT Advisory Committee on Childhood Cancer and groups like the Carson Leslie Foundation can help CPRIT to identify important opportunities for future CPRIT investments that will accelerate progress in childhood cancers.” Jim Willson, Chief Science Officer – CPRIT

 

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Maine Vincristine Shortages

We are in the process of speaking to Maine’s Senator’s and selected Representatives in Washington, DC.  We are looking for examples of children who live in Maine and are, or were, affected by the recent vincristine shortages.   Please complete your contact information below, and in the message section please give your zip code so that we will know who your Representative is, and your phone number (optional), plus any comments you would like to make, and summit if you would be willing to give a message of support for a bill to ensure that shortages of vital cancer drugs do not occur in the future.

Thank you,

 

 

 

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September 2019 in our Capitol

SeptinWash_edited-1In our nation’s Capitol, September will be full of activities that will highlight the need for more medical research and opportunities for us to show that we are One Voice Against Childhood Cancer. Together, we are asking our government to make kids’ cancer a national priority.

Below is a schedule of activities that you may find interesting.  As additional information is received, this page will be updated weekly.

Also, available for your use is a Pocket Guide with map marking each activity and location.

Wednesday, September 18:

The Rally for Medical Research is both a call to action for Congress to make medical research a national priority, and a means by which to raise awareness with the general public about the importance of continued investment in medical research through the National Institutes of Health.  The training session will be held at 2:00 p.m. in the Top of the Hill Banquet and Conference Center. The reception will also be held at the Longworth Building starting at 6:00 p.m.. For more information, contact Mary Lee Watts (marylee.watts@aacr.org)

Rally for Medical Research Training Meeting  2:00 pm, Top of the Hill Center   There will be a Reception to Celebrate Medical Research at 6:00 pm, in the Longworth Building

Thursday, September 19:  

Advocacy on the Hill, Rally for Medical Research, 7:30am – 5:30pm   Breakfast will be served at 7:30 a.m. at the Renaissance Washington, DC Downtown Hotel followed by a short meeting. Meetings will be scheduled for participants with their individual Senators and Congressional Representatives. It’s a great opportunity to meet the people from your state and district that are representing you in Washington. This is your opportunity to let them know how valuable research is to you, your family, and our economy.

A Golden Toast honoring  members of  The Congressional Childhood Cancer Caucus.

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This is a invitation only event. Reception, Golden Toast, from 6:00-8:00 pm (contact Annette Leslie)

The child friendly event marks the tenth year of the cancer caucus and will  honor Members of Congress and their staffs for the tireless work they have invested over the years.

Friday, September 20:

Childhood Cancer Caucus  10th Annual Childhood Cancer Summit, 9:00 am. The 2019 Congressional Childhood Cancer Caucus is a bipartisan caucus serving as a public policy clearinghouse for information on pediatric cancer and to be a forum for Members of Congress to work together to address this critical issue. The Caucus of over 100 congressional members strives to raise awareness about pediatric cancer, advocate in support of measures to prevent the pain, suffering and long-term effects of childhood cancers, and work toward the goal of eliminating cancer as a threat to all children. The event will be at the Capitol Visitor’s Center (CVC).  Following the Caucus Summit there will be a   Alliance Luncheon and Art Show

Kids V Cancer  Youth Advocacy Day, 12:00 NoonOn Friday, after the House of Representatives Childhood Cancer Summit, CureFest will sponsor a pediatric cancer Youth Lobby Day.Kids will attend an advocacy training session. Please meet in the Rayburn House Office Building basement cafeteria on Friday at noon.  45 Independence Ave SW.  Washington, D.C.  Parents will be welcome to stay in the cafeteria. Kids will then meet with Members of Congress and Congressional staff to express their support for pediatric cancer research. This is a kids-only advocacy day for youth in elementary school to college. Parents will be welcome to stay in the cafeteria.  This is a powerful way to ask Congress to care about kids with cancer. Be part of the solution! (No experience is necessary). Contact Jenn Flynn (jenn@kidsvcancer.org) for additional information.

Reception,  CAC2 Welcome Reception and Awareness Celebration, 5:00 pm

Saturday, September 21 

March to the Capitol  Rally to the US Capitol March, 2:00 pm This event is being organized by Rally Foundation for Childhood Cancer Research. Here is a preliminary schedule Families will be meeting on Freedom Plaza to make signs and then march to the U.S. Capitol and back. Freedom Plaza is located at the corner of 14th Street and Pennsylvania Avenue NW. The majority of rally participants will be attending the Welcome, Meet & Greed Event which begins at 5 p.m. at Freedom Plaza  where this Rally walk begins.

CureFest  Meet & Greet on Freedom Plaza, 5:00-7:00 pm   A welcoming event the night before CureFest will be held at the Freedom Plaza, Washington, DC 20004. This family friendly event includes Packet Pick Up for the CureFest Walk, and some activities for children.

 A Night of Golden Lights and White House Candlelight Vigil, 7:00-9:15 pm  Immediately the Meet & Greet is a “A Night of Golden Lights.”  to honor the children taken by cancer and all those still in the fight. Children, their families and advocates will walk from Freedom Plaza as a group and gather in front of the White House holding gold lights. The mission of the rally is to generate public awareness for childhood cancer. This event is open to the public and  is free to all participants.

Sunday, September 22

On the Mall, The big  CureFest Festival and Walk

CureFest is an annual festival in Washington, DC that is the key component of the growing childhood cancer movement. CureFest is held in the Nation’s Capital each September in an effort to make childhood cancer a national priority. It is an opportunity for the childhood cancer community, the general public and elected leaders to come together as One Voice against childhood cancer. The ultimate goal is safer treatments and better outcomes for children diagnosed with cancer.

Ceremonies, 10:00-11:45am.  Walk, 12:00 noon  Ceremony, 12:40 pm.  Daughtry Acoustic Trio, 1:00 pm.  CureFest, again this year, will be held on  the Mall close to the U.S. Capitol. It is a very prominent location and is very close to public transportation, food vendors and public restrooms

 Monday, September 23

 Youth Advocacy Day, 12:00 Noon  CureFest will sponsor a second pediatric cancer Youth Lobby Day. Kids will attend an advocacy training session. Please meet in the Rayburn House Office Building basement cafeteria on Friday at noon.  45 Independence Ave SW.  Washington, D.C.  Parents will be welcome to stay in the cafeteria. Kids will then meet with Members of Congress and Congressional staff to express their support for pediatric cancer research. This is a kids-only advocacy day for youth in elementary school to college. Parents will be welcome to stay in the cafeteria.  This is a powerful way to ask Congress to care about kids with cancer. Be part of the solution! (No experience is necessary). Contact Jenn Flynn (jenn@kidsvcancer.org) for additional information.

 
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Collaboration to Cure Medulloblastoma

 

Editor’s Note: In recognition of Brain Cancer Awareness Month, we are publishing an article that was reported in the April 24, 2019 ASCO Daily News. It highlights the massive collaborative efforts by private foundations such as the Carson Leslie Foundation and others to promote research in all types of childhood brain and CNS cancers. Private foundation funding and collaboration will be the key to finding cures in the future.

Carson Leslie was a kind, popular, full-of-life teen who loved sports and spending time with his family and friends. He was a devoted student at the Covenant School, in Dallas, where he was quarterback on the football team, and an active member of Grace Bible Church. He shared a special bond with his older brother Craig, and the two were inseparable. He was “an indominable spirit from early on as a little boy” and “the kid everyone wanted to hang out with on Friday nights,” reminisced his mother, Annette Leslie.

When Carson was 14, he experienced a cascade of symptoms that initially perplexed his physicians but ultimately led to the diagnosis of medulloblastoma. He underwent treatment for 3 years until the family was told there was nothing further that could be done. He died of the disease at the age of 17, in early 2010.

Throughout his years of treatment, Carson kept a journal, which eventually became a book, Carry Me, published 6 days before his death. The book provides a glimpse of what it is like to fight a life-threatening disease as a teenager. He wrote, “I have written a book to give a voice to the teenagers and children who have cancer but are unable to express how such an illness affects their personal, social, physical, and emotional life … I wish to make a difference, and I know others my age want to do the same.”

“Carson was a giver at heart,” Ms. Leslie said. When it became clear that he would not survive the disease, he told his parents to “make sure they study those tumors in my brain, because if those tumors can help some kid someday not die from cancer like I am, I’d like that; it’s hard to have cancer.” His family honored his request, donating tumor samples that were used for mouse models. This was only the beginning of the contributions from Carson and his family.

In 2010, the family launched the Carson Leslie Foundation as the only nonprofit organization in the United States with a focus on finding a cure for medulloblastoma. “Medulloblastoma is the most prevalent of children’s brain cancers, and brain cancer is the deadliest of children’s cancers,” Ms. Leslie said.

Through a collaboration with the Cancer Prevention and Research Institute of Texas, the Carson Leslie Foundation supported the Carson Leslie Awards for Pediatric Brain Cancers totaling $3.2 million for research programs at University of Texas Southwestern Medical Center, Baylor College of Medicine, and Texas Tech University Health Sciences Center. The Carson Leslie Foundation established a #cureMEdullo initiative to further propel its research support. One of the first efforts as part of this initiative was supporting a Conquer Cancer Foundation of ASCO/#cureMEdullo Young Investigator Award in Medulloblastoma Research powered by the Carson Leslie Foundation.

“It is an honor to partner with ASCO and Conquer Cancer by investing in a Young Investigator Award,” Ms. Leslie said. “We have great hope a young, eager, open mind will unlock secrets hidden in the complexity of medulloblastoma and bring less-toxic treatment to this awful disease with an ultimate goal: a cure.”

Gerald J. McDougall, a Conquer Cancer board member and the chair of the Carson Leslie Foundation board, said, “The joining of forces between our organizations represents our synergistic commitment to advancing research in medulloblastoma and ensuring a cadre of investigators focused on this important area. Based on my decades of working with leading cancer organizations, leveraging ASCO infrastructure by supporting the Conquer Cancer Young Investigator Award program makes sense for these organizations.”

Walter M. Capone, MBA, a Carson Leslie Foundation board member and director of its #cureMEdullo initiative, said, “Since inception, #cureMEdullo/the Carson Leslie Foundation’s singular focus has been to accelerate the most promising science and therapeutic advances in our pursuit of cures for children fighting medulloblastoma. The Conquer Cancer Foundation’s mission is exquisitely aligned with Carson Leslie’s, and we are deeply gratified to partner with such a powerful organization on this ambitious journey.”

The Carson Leslie Foundation’s work is not limited to research. Because Carson had cancer for most of his teenage years, the family saw first-hand a need to fill a void in services and activities geared to patients with cancer in this age group. “When Carson was an inpatient, he never left his room,” Ms. Leslie said. “The playroom was full of ‘loud little kids,’ and those were very lonely days for him. So, we built the teen room, we affectionately named ‘ ,’ on the oncology floor at Children’s Health, Dallas, where he was treated.”

Ms. Leslie further recalled, “When Carson was diagnosed, we arrived at the ER with nothing, so we now provide Under Armour backpacks for [teens who are] newly diagnosed or relapsed [that are] full of items that might come in handy during long hospital stays. We are thrilled to have a partnership with the Jordan Spieth Family Foundation to expand our backpack project to additional hospitals.”

“We are honored to work with the Carson Leslie Foundation to make progress against medulloblastoma,” said Nancy R. Daly, MS, MPH, chief philanthropic officer for Conquer Cancer. “The Leslie family’s commitment will make a tremendous impact and bring hope to other children and families suffering from this disease.”

Author Joe Baber

 

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Two Little Words

Two words that are used most when people contact Members of the House or Senate are: “I want,” and “I need.” Representatives and Senators hear them everyday. The two words they seldom hear are “Thank You.”

38145872 - portrait of smiling little school kids in school corridorThis year alone, Congress passed the RACE Act, which will improve drug development for childhood cancers. $12.6 million was appropriated for a fifth year for the Gabriella Miller Kids First Act. The Department of Defense, CDMRP, again provided millions of dollars in funding for Pediatric Brain Cancers and the Peer-Reviewed AYA and Pediatric Cancer Research Program. The House and the Senate passed and fully funded the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act and the President signed it into law. It will expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences, enhance the quality of life for childhood cancer survivors, and ensure publicly accessible expanded access policies that provide hope for patients who have run out of options.

It’s time for our Legislators to hear the words they want to hear most, “Thank You.” By recognizing them for the good they have done for our children, we will leave an everlasting impression of gratitude. In the future when we go back to ask for other helpful legislative initiatives or support, they will be more willing to help.

There are many ways to say “Thank You.” You can call, write, tweet, facebook.and even visit their offices. Thank them and make it personal. Tell them how their efforts will help you, your child, or your community. Use #GoldStrong, #ChildhoodCancer, or #CureFestUSA 

How to contact your Legislators

Everyone has one Representative and two Senators

All you need is a computer linked to the internet and your zip code

Representative: https//house.gov

Senators: https//Senate.gov

Author: JoeBaber

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , | 1 Comment

Lock up September 2019

We all know that September is Childhood Cancer Awareness Month. It’s a 30 day period each year that is set aside for the children, or is it?. It’s a chance for us to make the world pay a little more attention to our community, or is it?. Each year in October, we converse among  ourselves about  how we  did not have all of September  to ourselves  because the breast cancer people took some of it from us. Let’s think about that for a minute or two. Do people actually take some of September away from us? I submit that we may be  giving it to them?

Most of our friends and relatives know our personal cancer stories and, for the most part, support us. Creating awareness and asking for support is a lot like selling life insurance, Avon or Tupperware. If you have ever done this, then you know it’s easy until you exhaust your supply of friends and relatives, after that it gets very difficult. For most of us, when our child was diagnosed, our friends and relatives came running to us. Also, for the most part, all of them, because of their close association with us, now know as much about childhood cancer as we do. Here’s our problem. We facetoface2need to reach outside of our social circles! The childhood cancer community is mostly talking to each other on Facebook, Twitter, and Instagram.  These are great tools for spreading awareness, but we seem to lack the ability to reach outside our own community or our normal social circles. Nothing, absolutely nothing, beats talking to people face to face!

This may help in creating awareness and gaining support. Develop an elevator speech. It’s a short talk that you can give, in a minute or less, to a total stranger. Seek out people you don’t know to get them interested in childhood cancer, tell them your story in a nutshell and then give them your Facebook page to “like.” Exchange contact information if possible. Use business cards (printed on both sides) with your information to pass out. Hand them something! Do not let them go away empty handed!

Child's DrawingTake some time off Facebook and go on a shopping field trip!   Contact everybody you buy stuff from and tell them how much it would mean to you and your family, child, hero, and or survivor to see GOLD in September.  Give them your cardLet them know that childhood cancer people shop in their store and would appreciate some consideration in observing Childhood Cancer Month by posting a sign or making a display.  Ask them now. You could even get kids to make signs  (they would love to) to give to the merchants. Think about it. How can a merchant turn you down? Think about how many people will see the message if you are successful in getting a sign in that high volume store or restaurant!

When it comes to seeing gold ribbons on store windows, or in advertisements, that’sBlackboardwearRibbon another story. Sorry to burst anybody’s bubbles here, but the people who make or sell the very stuff  you use and spend your money on everyday do not read our Facebook posts. They do not “like” our Facebook pages, much less our posts. They like our MONEY!  They are not aware that childhood cancer is a problem because it has not yet affected their business.  For the most part, until something has a measurable or perceived effect on them financially, businesses will not act. We must show them with our words and actions that it will have an effect on their future business. If you haven’t done so already, it’s really too late for 2019, but during the September, you can look for opportunities to write to companies (Pampers, Huggies, Enfamil, etc.) who have a vested interest in children and market their products toward them.   All the things children use should be targets of contact by email or letter. Maybe in September 2020 or 2021 we can see more gold on the merchandise that is marketed for children. Write them this September and tell them how disappointed you were that they did not participate even though they market to children. We should fully support any business that is promoting childhood cancer awareness.

flavorIceCompanies like FlaVorIce  should be supported for their efforts to help increase awareness of  childhood cancer.  Use them as an example of what we would like to see on products they market to kids. By the way, FlaVorIce does this 365 days a year, not just in September. Why not ask those that aren’t, “Why not?”  We need to be heard OUTSIDE of our own community! Read the contact information on their package and CONTACT THEM and tell  them to have some gold stuff in SEPTEMBER. Many of the businesses you know well have Facebook pages. Think of the possibilities!

Imagine the impact we could have in September if we learned from the breast cancer people how to get outside of of own community and shout to the world about the number one disease killer of children.  Wherever you see pink in October is an opportunity for us to have Gold in September of next year. Let’s work together so childhood cancer owns September each and every year!

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Nothing is impossible If we stick together and get loud.

Author: Joe Baber     

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , | 2 Comments

4 TIMER

Editor’s Note: Most times, when you meet someone for the first time, either in person or digitally, you never know which road they used to come into your life. Rachel Edwards certainly used the road less traveled when she came into Four Square Clobbers Cancer. Rachel is a four time cancer survivor and a Senior at Clemson University. The number 4 in her story is almost a theme: 4 Timer, 4 Square, 4% of NCI budget, only 4 drugs have ever been developed specifically for childhood cancers. 

This week, U.S. Senator Tim Scott will meet with the H.E.L.P. committee to discuss important childhood cancer legislation. The committee will review a bill that could save thousands of children who are fighting for their lives. As a four time cancer survivor, I’m appalled by the thought of the committee potentially blocking the bill.

Cancer stripped me of my childhood. Starting at age 10, I was no longer able to participate in sports, see my friends, or even go to school. My social life was reduced to occasional visits from friends and family, and only if my white blood counts were high enough to allow them near me. Three remissions in five years forced me to grow up pretty quickly.

Cancer remains the leading cause of death by disease past infancy among children in the United States, yet the same treatments that existed in the 1970s continue with very few changes. There is not enough research being done in the realm of pediatric cancer, and that’s simply because researchers don’t have the resources.

The National Cancer Institute, which receives its funding from the federal government, only dedicates 4 percent of its budget to pediatric cancer research. That is 4 percent for ALL subtypes of pediatric cancer, from Leukemia to Rhabdomyosarcoma to Diffuse Intrinsic Pontine Glioma. That is truly disheartening.

The U.S. legislators decide where the money goes, but they don’t understand that children are not tiny adults. Pediatric and adult cancers are different, and so are the necessary treatments. Children battling cancer spend every waking moment worrying. They worry about adverse reactions to treatments created for adults, the mental and physical pain inflicted by their condition and the long-term side effects that arise after receiving their long awaited N.E.D. scan. All of that is in addition to having to accept the possibility of a tragic fate. Meanwhile most of their friends spend their days racing each other on the playground or trying out the latest Snapchat filters.  

The Childhood Cancer Survivorship, Treatment, Access and Research (S.T.A.R.) Act would ease the worries of these kids and their families. It would expand opportunities for research, improve efforts to identify and track incidences and enhance the quality of life for childhood cancer survivors. It would allow research in South Carolina to make groundbreaking advancements, and it would improve the quality of life for children in our community. But legislators across the nation, legislators like Senator Scott and Senator Lindsey Graham, have decided not to support this bill, making it impossible for it to pass. These senators have decided that the kids in their communities that are fighting this battle are not worth their support and have provided no explanation as to why. That’s why I’m fighting, along with a nonprofit called South Carolina With Purpose, to give a voice to the children who have been ignored for so long.

Government officials talk about investing in the future and preparing America for tomorrow, but it’s amazing how little politicians care about children. People under 18 may not be able to vote, but they matter. So, I’m calling on Senator Scott and Senator Graham to give these kids a chance.

Join our movement and tell your senators that we need their support. Sign our petition. Tag them in a tweet. Call their office. Flood their inboxes. Do something! Children don’t have a vote in congress, but our senators, who are constantly overlooking this problem, do. I am now a college senior and six years cancer-free. I owe my life to a clinical trial, and that’s why I’m asking you to show your support.

The Senate H.E.L.P. Committee will meet on Wednesday to decide which health-related issues are worthy of making it to the senate floor. Don’t let the Childhood Cancer S.T.A.R. Act get overlooked.

Author: Rachel Edwards

 

 

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , | Leave a comment

Turn Away… You may not want to hear this

About eleven years ago, I was with my middle daughter, JoAnna Baber on our overnight shift at Rady Children’s Hospital in San Diego, CA watching over my 18 month old grandson and her nephew, Conor after he had lifesaving surgery to remove a neuroblastoma tumor wrapped around his aorta. We were providing some relief for Beth Anne Baber and Nick, parents of Conor. Our job was to make sure he did not pull out any of the wires and tubes that were connected all over his body. In the PICU at 3 AM it’s pretty quiet, mostly beeps from the equipment. I will never forget the night I heard a horrible sound from across and down the hall of uncontrolable crying and sobbing coming from the parents of a child who had just died of cancer. That single incident is embedded in my memory and has driven me to try to find ways to help kids with cancer. My unforgettable experience that night made me very receptive to one woman’s life long mission today. Suzanne Gwynn, a most favorite person of mine and Conor’s mom, is a powerhouse who has been a critical care and oncology RN nurse to children for about 30 years. People do not want to listen to her because she speaks of the very sad and unspeakable… children dying. Not only dying, but most kids are having to die in strange places, like hospitals. As Suzanne says, children dying is unimaginable,  childhood cancer is not your world…until it is, and then when it is, it’s absolutely devastating to you, your child and your entire family. Suzanne is trying to build a palliative care/hospice home for children. It’s not just a good idea, it’s really our responsibility as adults to ensure that our children are well taken care of, even when at death’s door. The typical hospice does not know how to help children die because they are not supposed to. In Suzanne’s Ladybug House​ palliative care /hospice it will never be just about dying, but it will be about living all the way to the last breath.

A former patient of Suzanne’s, Bill Harper who had leukemia 7 years ago and was close to death, came back to interview her and find out more about her project of love for critically ill children. Here is Bill’s interview with Suzanne. It’s 30 minutes long! If you have ever loved a child, you need to put your big boy or big girl pants on and listen to it. It is our responsibility to know about what children have to go through to live to the last breath so that we can change and improve what we are doing. It won’t go away if every one ignores it. Listen here:  https://soundcloud.com/bill-harper-583059533/its-not-about-dying-its-about-living

Author: Joe Baber

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screen-shot-2017-01-04-at-9-56-04-amOur health system fails terminal kids

 

 

 

 

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , | 1 Comment

How can a baby be a hero?

Yes!  A baby can be a hero! Babies are saving lives with their life saving cord blood stem cells. These miracle cells are currently being used to treat and cure more than 80 life-threatening illnesses, including many cancers, immune deficiencies and genetic disorders blood.  Maybe, they can help you, your child, or someone you know.

On Wednesday, November 15, 2017, World Cord Blood Day had a live virtual conference focused entirely on the uses of cord blood. Leading researchers presented highlights of their work, they educated the public on the latest advances and treatments using cord blood. If you missed it, or want information on cord blood, World Cord Blood has videos available for your use at no charge. https://www.worldcordbloodday.org/video-recordings-world-cord-blood-day-2017.html

On Wednesday, November 15, 2017 at 9am EST, you can join others around the world for a live virtual conference focused entirely on the world of cord blood. Leading researchers will be presenting highlights of their work, educating the public on the latest advances and treatments using cord blood. In addition to lectures designed for health professionals,  special sessions will be dedicated to those who are just learning about cord blood. Expectant parents, health professionals and the general public are invited to attend. Below is a helpful one page summary of the advantages of saving and using cord blood. A  printout (.pdf) is available for your use:  Facts About Cord Blood

Author: Joe Baber

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Are you pregnant or do you know someone who is?

 

 

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Cord Blood – A life line

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , | Leave a comment

Cord Blood, a life line

CordBlood_edited-1

We are living in truly amazing times as scientists are just beginning to understand the power of stem cells. In particular, cord blood stem cells are providing new hope to cancer patients throughout the world. At Save the Cord Foundation, we believe strongly that every expectant parent needs to understand how cord blood is currently used as well as the promising research happening in this field. We want parents to make an educated decision about whether to publicly donate or privately store their future baby’s cord blood.

Cord blood provides a non-controversial source of stem cells. This non-controversial source of stem cells is not only easy to obtain but it is proving to be the “stem cell of choice” again and again for treating many blood cancers. For many children (and adults) suffering from cancer, cord blood is often their only hope.

In fact, some studies now suggest that cord blood may be more effective than bone marrow in treating certain diseases such as leukemia (source: http://www.coloradocancerblogs.org/cord-blood-matched-unrelated-donor-bone-marrow-transplant/ ).

Did you know that there have been over 35,000 cord blood transplants since the first procedure was performed in 1988? Did you know that cord blood has been approved by the FDA for the treatment of more than 80 different diseases including leukemia, lymphoma and sickle cell anemia?

Cord blood registries worldwide have been established alongside public registries for bone marrow donors (example: BeTheMatch). When seeking a stem cell donor for a patient, doctors often search for both bone marrow donors and cord blood donors. For certain patients, cord blood is the preferred option.

Stem cells from cord blood have been shown to have distinct advantages over bone marrow stem cells. Cord blood stem cells are less likely to provoke Graft Versus Host Disease (GvHD) than bone marrow. They are much easier to match than bone marrow thanks to fewer matching criteria.

Cord blood stem cells are easy to store and accessible at any time thanks to the freezing process whereas collecting and using stem cells from bone marrow is quite an involved process for the donor. Cord blood stem cells are more primitive (thus easier to adapt) than stem cells that are found in bone marrow for example and collection of cord blood stem cells does not harm the mother or child since it is done post-birth.

You can learn more on the advantages of cord blood stem cells here.

At Save the Cord Foundation, we have seen first-hand how cord blood saves lives. We would like to introduce you to two wonderful boys. Meet Dylan and Noah.

Dylan Praskins _ Amusement Park Post Cord Blood Transplant_Age 6

 

Dylan: Being a kid thanks to cord blood!

Dylan Praskins was diagnosed with Acute Lymphocytic Leukemia (ALL) at a mere 2 months old. His cancer was very aggressive and he was considered very high risk because he was not even 90 days old at the time. He was immediately put on chemo and doctors determined that a cord blood transplant would be his best option. Read Dylan’s story which his parents describe as “nothing short of a miracle.”

Noah Swanson_cord blood transplant

Noah: Starting school and enjoying life thanks to a cord blood transplant

Noah Swanson was 10 months old when he started to develop chronic ear infections. A simple blood test revealed that his white blood count was dangerously low. At 2 years of age, Noah was diagnosed with myelodysplastic syndrome (MDS). Find out how cord blood saved Noah’s life.

Today’s children are both key to this evolution in medicine of using cord blood stem cells and potentially its greatest beneficiaries. More than ever, we need expectant parents to be pro-active about saving cord blood (whether they store it privately or donate it). All you need to do is meet someone like Dylan Praskins or Noah Swanson who has been helped by a cord blood transplant and you will see why we consider it such a valuable resource.

In addition to using cord blood to treat many blood cancers, there are numerous clinical trials underway using cord blood to potentially treat things like acquired hearing loss, cerebral palsy, perinatal stroke, autism, HIV and much more. This is exciting science that is quickly becoming applicable medicine for the general population. Find out more about the latest cord blood research.

The debate on cord blood is over. We know now that it is used to treat blood cancers and is highly effective. We know now that it is a non-controversial source of stem cells that is easy and harmless to collect. We know it has distinct advantages over bone marrow stem cells and can be the preferred treatment option for many patients. Yet, currently, cord blood is simply thrown away as medical waste in over 95% of births. Why? Lack of awareness about cord blood is the main reason. Logistics and costs are also major challenges for both hospitals and parents.

Save the Cord Foundation is working to change this through extensive educational outreach and supporting ground-breaking programs to hopefully, one day, make cord blood collection the standard of care for births. Help us to achieve this goal! Join the cord blood movement or make a donation.

So why should you save your baby’s cord blood? We can give you 80+ reasons! Please don’t throw your baby’s cord blood away.  You do have options.  If you are pregnant (or know someone who is), feel empowered and be pro-active.  Talk with your doctors about either privately banking your baby’s cord blood or donating it to a public bank so that it can help someone waiting for a match. If there is not a public donation program at your hospital, a “hybrid bank” may be able to help you donate (visit our site www.SaveTheCordFoundation.org for a list of options).

There is not a bad choice.  However, if you choose to do nothing, your child’s cord blood will be thrown away. . . simply thrown away as medical waste.

Give life twice. #SAVETHECORD

Author: Save the Cord Foundation Staff

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized, young adults | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , | 1 Comment

CAVATICA Genomics Data Sharing

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Editor’s Note: CAVATICA completed Beta testing and went live on October 17, 2016.  This is a huge step in the right direction to eliminate silos of data and enter a new world of data sharing. The complete story can bed found here.

I have a rule that I follow—that if a parent who has lost a child to cancer needs a hand, I will find a way to pitch in—no matter what. Of course, life is busy, there are never enough hours in a day; however, those who are fighting to save the lives of children despite losing their own child are given high priority status. So when my friend (who I met via this blog) Amanda Haddock from Dragon Master Foundation asked if I would be interested in LaurieOFBpost61516_edited-1attending the Children’s Brain Tumor Tissue Consortium (CBTTC) Annual Investigator/Foundation Meeting in New Orleans, saying yes to an excursion to the Big Easy was very easy. I figured I could go, take notes and write them up, and thus make a tangible contribution to a cause that I care so much about.

I know so much about so many different types of cancers, but so little about brain cancer. My family has been hit by various adult cancers, but no brain tumors or childhood cancers to date—knock on wood. Little did I know how much I would learn at this meeting. I feel like I’ve gained more than I could possibly give back.

So, just briefly, the CBTTC is a collaborative research program led by leading pediatric brain cancer clinicians and researchers across 8 institutions, with The Children’s Hospital of Philadelphia (CHOP) as the coordinating center. I’ve included a 1-pager (click here), for those who are not familiar with the CBTTC research program and objectives.

The meeting captured a lot of heavy duty science—and I mean heavy, hard-core science—not only with respect to tumor biology and genomics, but also computer science and informatics. I’m sure almost everyone in the audience had some of those deer in the headlights moments, given the subject matter being presented at any given moment. Attendees included representatives from several non-profit foundations, neuroscientists and other laboratory/clinical scientists, pediatric neurooncologists responsible for day-to-day clinical care, and computing/informatics professionals. As someone with a background in oncology pharmacy, the computing/informatics part is most foreign to me, which is likely true for most clinicians and non-computer scientists who speak a very different language than computer scientists.

Untitled-1_edited-1In terms of my note-taking, there was so much technical information that I am in the “process of processing”. But in the meantime, I wanted to share with you – members of the childhood cancer awareness community – some of the big takeaways.

First, unless you have been living under a biomedical rock, you are familiar with the VP Joe Biden-led Cancer Moonshot. If so, you have heard lots of talk about breaking down silos, collaboration, big data, genomics, immunotherapy, and precision medicine. Lots and lots of talk about share, Share, SHARE in the interest of accelerating cures and saving human lives from the devastation that often accompanies a cancer diagnosis.

Well, the bottom line is, that the CBTTC is already doing these Moonshot-esque things—and have been doing these things. This “sharing” is in no way a new concept for the LaurieMeetingImageCBTTC. Not only are 8 institutions working together to break down those silos, they are more than happy to share, Share, SHARE their data with institutions outside of the CBTTC network. Their willingness and ability to do so stems from a genuine desire to save lives—save them while sparing them from the long-term and sometimes life-long toxicity of treatment regimens that are unlikely to help them, based on the characteristics of their own unique tumor biology. We can do things now, in the year 2016, that simply couldn’t be done before. On that note, while the CBTTC has been collecting high-quality biospecimens for several years, simply collecting tumor tissue isn’t enough from a saving lives standpoint. So they have not only been collecting tissue from all brain tumor types, but they have been linking that tissue to long-term clinical and genomic data. Then, by creating an open-access specimen and data informatics system, an environment for worldwide collaboration can be put into place. And it has been put into place already, with the introduction of CBTTC’s CAVATICA—a new cloud-based environment for securing storing, sharing, analyzing large volumes of pediatric brain tumor genomics data. CAVATICA is named after Charlotte A. Cavatica—the LaurieCAVATICAbarn spider of the children’s story Charlotte’s web. It’s not puffery to say that real advances can and will come from this type of comprehensive genomics/clinical database. As I learned at the meeting, the CBTTC already has several commercial partnerships in place to develop what we might call “apps” to make sifting through such large volumes of data more user friendly. They have also partnered up with the Pacific Pediatric NeuroOncology Consortium (PNOC, network of 15 children’s hospitals that conduct clinical trials of new therapies), creating a critical bridge between science and clinical medicine. CAVATICA is so innovative and the partnerships in place are so very timely, fitting right into the Cancer Moonshot.

So takeaway 1 is really that the CBTTC is already doing what researchers should be doing in the interest of saving and improving human life, and that’s very inspiring.

Which leads me right to takeaway 2, which is critical for everyone to know and understand. CAVATICA may have started as a pediatric brain tumor database, but it is being developed to expand to any and all tumor types. This includes not only other types of childhood cancers, but also adult cancers. And this is a truly awesome thing, for reasons that may not be obvious on first blush. First of all, discoveries for children with brain cancer will be further accelerated by the ability to compare and contrast the genomic patterns in those tumor samples with those from other childhood and adult cancers. Without having those other cancers in the mix, critical patterns that can lead to new targets for treatment can be missed. Secondly, I hope that we can all agree that all patients with cancer deserve curative treatment, no matter what type of cancer or what age the patient is at diagnosis. All cancers represent some type of DNA damage. We should be able to reverse that damage, more effectively and user safer patient-specific therapies. Because I am all about “cures for all cancers”, I love the CAVATICA database and the vision behind its pioneers all the more. I believe that now is the time to break down the childhood vs adult cancer silos, so a big Thank You to the CBTTC for seeing the big picture in their big data plans and designing CAVATICA as something that we can all get behind.

Lastly, perhaps the most shocking takeaway for me is this: this high-tech effort, requiring intersection of various types of science and clinical medicine, has been and continues to be Lauriecavaticalaunchfunded in its entirely via donor support. Without the enthusiasm and generosity of the various non-profit foundations, CAVATICA would not exist. And it is not lost on me that children, many of whom have lost their lives, are the ones making this happen—these kids include Kortney Rose (age 9 when she passed away from brain cancer after 4.5 months), David (age 18 when he passed away from brain cancer after about 2 years), Christopher (age 7 when he passed LaurieKennedyquoteaway from brain cancer after 9 months), and Thea (diagnosed with brain cancer at 4 months of age and continuing her fight at age 9, having been in treatment almost her entire life), and so many other foundations, families, and donors who are stepping up to make the vision of the CBTTC a reality. I encourage everyone reading this to learn more about the CBTTC in particular and figure out ways to collaborate on the Cancer Moonshot in general—which is far more complex and for which far more is at stake relative to the regular “Moon” Moonshot. Whereas the moon is one big static thing, curing cancer will require precise rockets specific to millions of big and little people.

Author: Laurie Orloski

Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | Leave a comment

The Cancer Moonshot: Are Our Kids Stepping on the Moon Too?

MoonShotAgin_edited-1On September 12, 1962 President Kennedy delivered his famous “moonshot” speech. Screen Shot 2016-02-08 at 5.33.01 PMDeclaring that as a nation, we would focus vast resources to landing a man on the moon and safely bringing that man back to earth. It was ambitious and the roadmap was not fully developed. President Kennedy of course never lived to see that dream come to fruition; however when it did it is now even more fitting and apropos that the man who ultimately first set foot on the moon lost a child to cancer himself. Armstrong’s young daughter died from what most of us in the childhood cancer community now believe was DIPG, the same type of inoperable brain tumor that ultimately took the life of my daughter Alexis.

Fast-forward to the President’s recent State of the Union address delivered on January 12, 2016. He announced that once again the United States would embark upon heading to the moon. Except this time, the moonshot refers to the Emperor of all Maladies; Cancer. With Vice President Joe Biden steering the effort, the goal is to end cancer, as we know it. The cancer moonshot was announced with the hopes of infusing $1.0 billion dollars to the effort. In the 2017 budget that the White House prepares, there will be a request for an additional $755 million increase in funding for cancer research generally as well as the oversight of an additional $195 million in new funding provided to the , . The outline of the moonshot was released by the White House and can be found here.

Screen Shot 2016-02-08 at 5.34.57 PMFor the childhood cancer community, a simple question surfaced: Are our children going to the moon? The news release the White House issued does specifically mention pediatric cancer. The outlined effort for pediatric cancer, as denoted in the release, is aimed at developing new technologies for drug libraries for screening to discover new treatments; efforts to increase tissue and tumor specimen collection for the “rarest” childhood cancers; and the collection and inclusion of increased clinical data to assist clinicians in the future course of treatments. Based upon this thumbnail outline, it is difficult to tell whether or not our children will set foot on the surface or whether they will be like Michael Collins, who stayed in the command module poised to pick up Armstrong and Buzz Aldrin after they completed the first walk on the surface in 1969. In theory the efforts outlined in the release would certainly make a positive impact in the fight against childhood cancer. Creating a larger drug library for increased efforts at drug screening is critical to determining whether or not existing drugs, compounds, and even potentially biologics, demonstrate efficacy upon specific cell lines, tumor types, genetic mutations or other identifiable targets.

There is a more pressing and underlying issue that needs to be addressed, as it exists like a pink elephant in the room. Specifically, it is the issue of drug development and availability for childhood cancer. The ability to conduct more substantial drug screening, dependent upon access to the drugs and compounds, is the first component of unlocking more effective, less toxic treatments (of course backing up even further identification of proper targets to utilize for drug screening and targeted therapies is beyond essential). The secondary component of the equation is ensuring that these drugs and compounds, once the efficacy is demonstrated in the preclinical setting, are available to be initiated in clinical trials or available for clinical use. Anything less in this overall effort, in my humble opinion, ensures that children, like Michael Collins, will remain in the capsule waiting for the others to arrive back inside.

Ensuring greater data sharing either in the research or clinical setting, collection of increased epidemiology data, and tissue collection are of course necessary components to increasing the overall understanding of biology, incidence rates and treatment efficacy. Nevertheless, the key question remains, will more clinical trials be initiated for children with the drugs that are screened if the preclinical data “de-risks” the use of any of those drugs? Children with cancer without a set frontline treatment protocol are usually left without many options. For recurrent or metastatic disease, the options are even more limited.

bicycle-wheelI view childhood cancer like a bicycle wheel full of spokes. There are many spokes on the wheel and individually the spokes represent separate issues to be addressed. No single spoke is sufficient enough that if it was the focus of the moonshot it would be a “cure” for all forms of childhood cancer. Accordingly, placing bets on which spoke to focus upon is obviously very difficult. There are some commentators that have already opined that the amount of money to be dedicated to the overall effort is insufficient. This is probably very true. And, thus as we drill down to where our children fall in this moonshot, it seems likely that the overall impact will not be significant. Of course it is impossible to provide any reasoned assessment of the overall efficacy of this effort at this point in time. It is Untitled-1_edited-2easy to criticize, but such criticism is presently misplaced. In the end, any additional focus and resources dedicated towards childhood cancer is thoroughly welcome.

Neal Armstrong reached those first monumental steps by carrying his grief with him and allowing those emotions to keep him focused. In many respects, children with cancer have already set foot on the actual moon. It is up to us advocates to continue to ensure that children with cancer are always brought out of the command spacecraft and firmly planted on the moon. And it is up to us advocates to continue to work effectively to create opportunities for drug discovery, development and availability. An identified target is key to determining effective treatments, but there is an underlying component to the useful nature of that data. Unfortunately, if those treatments are not made available, then children with cancer can only continue to look at the moon as they circle it waiting for a turn to take that one giant step.

Author: Jonathan Agin
Reprinted from Max Cure Foundation. Follow Jonathan on Twitter @jonathanagin

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Broken Trust

BrokenTrust_edited-1I just can’t believe what I read the other day and what I am about to write about right now. This about trust—trust between patients and their healthcare providers. This is about trust that is being broken.

What I read:

The New York Times published an article on January 29, 2016, entitled: Drug Shortages Forcing Hard Decisions on Rationing Treatments. It was actually the subtitle that caught my attention: Such shortages are the new normal in American medicine. But the rationing that results has been largely hidden from patients and the public.

The article was not specific to childhood cancer or cancer in general, but many of the doctors quoted were oncologists. They talked about different approaches to rationing drugs, including decisions based on age. I encourage you to read the entire article, if you haven’t already.

What I’m writing about:

I’m going to reserve comment on the drug shortage problem itself, including the causes behind it and any proposed solutions. I am also going to reserve comment on the complex issue of rationing the drugs, other than to say that I recognize that nobody wants to be in this situation and that such decisions must be very difficult. I don’t want to get into any of that right now.

I’m writing about 1 aspect and 1 aspect only: the decision to not tell the patients and families.

Here are some specific highlights for context, taken verbatim from the piece:

CLEVELAND — In the operating room at the Cleveland Clinic, Dr. Brian Fitzsimons has long relied on a decades-old drug to prevent hemorrhages in patients undergoing open-heart surgery. The drug, aminocaproic acid, is widely used, cheap and safe. “It never hurt,” he said. “It only helps.”

Then manufacturing issues caused a national shortage. “We essentially did military-style triage,” said Dr. Fitzsimons, an anesthesiologist, restricting the limited supply to patients at the highest risk of bleeding complications. Those who do not get the once-standard treatment at the clinic, the nation’s largest cardiac center, are not told. “The patient is asleep,” he said. “The family never knows about it.[…]

Studies have associated alternative treatments during drug shortages with higher rates of medication errors, side effects, disease progression and deaths. For example, children with Hodgkin’s lymphoma who received a substitute to the preferred drug had a higher rate of relapse, researchers found, and adults with a genetic disorder called Fabry disease had decreased kidney function when their medication was cut by two-thirds. One alternative guideline adopted during a shortage of intravenous nitroglycerin “was downright scary from a clinical perspective,” according to Dr. Nicole Lurie, a senior federal health official.

Physicians say that many of the changes they are compelled to make appear to do no harm. But, they acknowledge, typically no one is tracking outcomes in patients who get a drug and others who get a substitute or delayed treatment.

Doctors and hospitals often do not tell patients about shortages and the resulting rationing because they do not want them to worry, especially when alternative drugs are available, or because they feel it would stir up too much anger.

Dr. Ivan Hsia, an anesthesiologist in Ontario, Canada, said many physicians in his field adopt what he called “the paternalistic model — like I’ll inform them when I think it’s unsafe enough to inform them.

When he and his colleagues surveyed hundreds of patients at the Mayo Clinics in Arizona and Florida and others in Canada about their preferences, the results surprised him. Most wanted to know about a drug shortage that might affect their care during elective surgery, even if there was only a minor difference in potential side effects, and many said they would delay surgery.

When the study was published last year in the journal Anesthesia and Analgesia, an accompanying editorial urged health professionals to disclose shortages and their implications. “Patients want to know and they should know,” the editorial said. “There is no ethical ambiguity.”

 Dr. Eric Kodish, a children’s cancer doctor who heads the Cleveland Clinic’s center for ethics, humanities and spiritual care, said patients should be told. “It’s their bodies and their lives that are on the line.”

Indeed, Beverly Smith, a Cleveland patient who has Crohn’s disease, said she had no idea that an important ingredient had been removed from the daily intravenous nutritional treatments she depends on until she developed side effects from the deficiency. “Why didn’t anybody tell me?” she asked. [….]

A recent shortage of a therapy for bladder cancer, BCG, demonstrates how the lack of national guidance can lead to very different decisions. One ,urologist, Dr. Andrew Stephenson, said he came up with BCG rationing guidelines that were used with dozens of patients after being shared with colleagues. “We tried to reserve the BCG for those patients who needed it the most,” he said.

Merck, the manufacturer, said it filled requests from a waiting list in the order received, and left rationing decisions to doctors. Some cancer centers reduced the length of BCG treatment from three years to one, because the benefit may be smaller after the first year. Others restricted BCG to patients whose tumors were mostly likely to spread or recur. And still others decided to reduce the typical dose so that each vial could be used for three patients instead of one, which some experts say raises questions about efficacy. Some outpatient clinics just ran out.”

Wait—what? Patients are not being told about shortages and rationing, citing reasons such as “worry” and “anger”? Is that really what I read? I seriously had to do a few takes and pinch myself.

PrescriptionAs a registered pharmacist who is trained in the hospital setting, I have to say that I am completely and utterly appalled by even the mere suggestion—and this is no mere suggestion, but what it actually says. Good grief.

“Patients should know.” “Patients should be told”. Should, should, should.

With all due respect, what’s with the “should”?

Nothing like stating the obvious here, but there is no should in this argument. Unequivocally, patients must be told if a therapy is being modified in response to a drug shortage.

Then we have this part, which completely blows my mind: “And still others decided to reduce the typical dose so that each vial could be used for three patients instead of one, which some experts say raises questions about efficacy.”

Wow, raises questions about efficacy, you don’t say? Are patients being told about these potentially efficacy-reducing dose-reducing strategies of rationing drugs to spread them around, even if the spreading around is thin? I can’t even find the words for just how QuestionsAboutEfficacyunethical it would be to not tell the patient that a dose reduction to save drug was being made behind their backs. I just can’t even get my head around that so-called strategy.

For many types of cancers, not all but many, alternative regimens exist that are considered equally effective. If I was being treated for cancer or if one of my family members were being treated for cancer, no way would I accept a suboptimal dose or duration of a chemotherapy agent on the basis of a drug shortage. I would explore alternative regimens. I would explore treatment at another center, if that’s what it took. If a dose reduction was ultimately the way to go, that would be for me to decide, after a detailed discussion of risk:benefit with my doctor.

Cancer patients have a tough enough battle without unknowingly receiving a potentially less effective (and possibly more toxic) substitute.

In some cases, reducing the dose a little might be a reasonable option. In other cases, it may be unreasonable.

The bottom line is that patients must be involved in this decision-making process.

I don’t care how busy these doctors and pharmacists are; they need to find time to explain the shortages to the patients and work with them on a solution that everyone feels good about.

So that’s the reality out there. Yeah, it’s scary, but I believe that it is way better to be informed than to live with one’s head in the sand.

I have no way of knowing how pediatric oncologists and adult oncologists may differ in terms of how they are handling the communication surrounding the changes they are being forced to make in response to not having enough drugs to go around.

LackofdisclosureI am in no way trying to demonize anyone.

Again, to reiterate, my gripes are not around the tough choices—but instead about the lack of disclosure to patients and families.

Clearly, it is more important than ever to really be vigilant—like a hawk.

Know the prescribed doses of all drugs to be used over an entire treatment regimen, also verifying that the doses are within the recommended ranges.

Keep yourself abreast of the drug shortage problems. Here are links listing drug shortages by generic name: http://www.ashp.org/menu/DrugShortages and http://www.accessdata.fda.gov/scripts/drugshortages/default.cfm. Check them. Nobody should have to do this on their own, but apparently patients must stay informed about this

Daunorubicin

Daunorubicin, primarily a leukemia drug and used for a few other cancers, remained in short supply for over 18 months 2014-2015

stuff. If there is any ambiguity or any questions, I would suggest calling the pharmacy at your hospital or clinic. It might not hurt to call them anyway. Form a relationship. If you have any friends or family members who are physicians, pharmacists, or nurses, ask them to help you as well.

Everyone should be doing this anyway, but if you haven’t been then now is the time to start: routinely check the dosing on any prescription bottles or infusion bags. Make sure the dosing has not changed. If it has, ask about why it is different. Sometimes doses might be modified due to a prior toxicity or for some other justifiable reason. It may or may not have anything to do with a drug shortage.

Preventing such an encounter is a much better plan though. So next time you talk to your doctor, pharmacist, or nurse, you may want to open up the dialogue. Be direct. Tell them you saw the New York Times piece. Tell them you are concerned about something like that happening to you or your loved ones—changes being made or drugs being withheld without your knowledge. Make it clear that you want to be informed. Talk to them, openly and honestly, but still stay vigilant!

If it were me or my family member and we showed up at an outpatient cancer clinic, only to find that what we had shown up for had been intentionally modified (whether it be a substituted drug or a reduced dose) without my knowledge or approval, I would go and round up 3 chairs: 1 for the prescribing physician, 1 for the dispensing pharmacist, and 1 for the infusion nurse. All 3 of them hold a responsibility. It would be explanation time. That’s just what I would do.

I would not be happy if it happened to me or a loved one, and I’m equally as unhappy knowing that these things are happening to other patients.

If a medication is being modified in response to a drug shortage, and the response is that it won’t affect anything, then ask your doctor for the evidence. Have them back it up just to be safe.

So, be proactively aware. Don’t be afraid to ask questions or speak up. Don’t let concerns get brushed off without evidence.

Trust your instincts.

Author: Laurie Orloski, PharmD

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Fly Me to the Moon

FlyMeToo_edited-1President Obama called for an end to cancer in his State of the Union Address to the nation this year. He tasked his own Vice President with the job and since then the buzz word “Moonshot” has offered renewed hope for millions of Americans.  EMoonshotROCKET_edited-1very one in our childhood cancer community is very excited about Joe Biden’s very aggressive initiative. He calls it, the Cancer Moonshot. Mr. Biden’s son Beau died of brain cancer a year ago. Like all of us affected directly by cancer, it’s made him extremely passionate and focused about finding cures for this terrible disease. No parent should ever see a child die from cancer.

Mr. Biden wants to approach cancer research with real gusto, the same way America came together to successfully put a man on the moon in the late 60’s. The Vice President has spent several months visiting a host institutions involved in finding cures and will visit more in the future. Along the way, he has found such obstacles as silos that resist information-sharing, territory wars and competition among researchers. He will also find that some government regulations meant to protect patients and improve drug development, are also a few more major impediments that will need to be cleared to get this “Moonshot” off the ground.

The Vice President identified two major goals:  1.) Increase resources — both private and public — to fight cancer.
2.) Break down silos and bring all the cancer fighters together — to work together, share information, and end cancer as we know it.

He went on to say, the goal of this initiative is simple — to double the rate of progress. To make a decade worth of advances in five years. “Over the next year, I will lead a dedicated, combined effort by governments, private industry, researchers, physicians, patients, and philanthropies to target investment, coordinate across silos, and increase access to information for everyone in the cancer community.”

We are totally on board with the Vice President! But, first we want to make sure all moon mission workers are aware of the major obstacles that childhood cancer has faced ever since President Nixon first declared War on Cancer in 1971.

The Vice President wants to hear our stories of how cancer has affected us and our families. The White House has provided a site to collect all the stories. We would be remiss to not urge everyone in the childhood cancer community to send them in. We need to let Joe Biden know that childhood cancer is not rare, but is a major national problem. One way we can make a point is to have a excellent response in submitting our stories.

Click Here to Submit Your Story

Click Here to Submit Your Story

When writing consider the following points:

First: We need to make sure that everyone on the moonshot mission  understands that childhood cancer is not the same as adult cancer. Kids are dying from twelve weirdly named cancers that have over 100 subtypes and none of them are breast, prostate, lung, colon, or other familiar sounding adult cancers.

Second: Everyone at mission control needs to be acutely aware that childhood cancer is the number one disease killer of kids. It was in 1971 and it still is. As a matter of fact, the rate of incidence has increased since Mr. Nixon declared war on cancer.

Third: When it comes to cancer research funding, all twelve of the childhood cancers lumped together receive less funding from the National Cancer Institute than prostate NCIFundingChart2007_2013_edited-1cancer alone. Nixon’s war on cancer has been going on for 45 years! Our children have been left behind. There have only been 3 drugs developed specifically for childhood cancer in the last 45 years compared to 60 new cancer drugs for adults in the last five years alone!  Today, after all those years, we have to embrace adult cancer drugs which are toxic and cause 95% of the survivors to have very serious health issues. Parents are shaving heads, selling lemonade, baking cookies, organizing walks and races to try to add more research funding. NCI has done little to address the such recalcitrant cancers as DIPG and others that are so prominent in our community and continue to take our children daily. A child whose life is taken by cancer loses nearly 70 years of life!

Forth: We have waited and waited to see progress. We are tired of waiting only to see our government continue to call this disease rare and therefore not a high priority. Children should be our highest priority. We are tired of having leaders point to the “tremendous MoonShotFirstprogress” we have made in childhood cancer survival rates in the last 50 years. Must I remind you that we are comparing today’s survival rates to fifty years ago when we were doing absolutely nothing but sending kids home to die. The truth is we have made little to no progress in the last ten years. To double this progress over the next five years as the Vice President said won’t mean much in the childhood cancer arena. We need to do much, much more than we have in the last decade.

We should take the attitude that we are not going to accept status quo on this Moonshot effort. Children deserve priority placement and a first class ticket to progress that is expected on this journey. It’s about time! We don’t have more time. Enough children have died from this horrible disease!

Author: Joe Baberbounceballauthor

A week after this post was published, the White House issued a Fact Sheet with more detailed information. While we are very pleased and grateful that pediatric cancer was identified as  one of the moonshot’s research opportunities, a fact with which we certainly agree, we will continue to question priority setting while monitoring levels of investment, and breadth of investigations. One thing Nixon’s 1971 War on Cancer taught us is to not take anything for granted.  We can not afford to let our children get lost in the shuffle.

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I Gladly Spoke Up for Kids With Cancer Today

SpokeUp_edited-1I spent a brrrrrr cold Thursday afternoon in Philadelphia, at a Cancer Precision Medicine Conference in Philadelphia, hosted by the American Association for Cancer Research Screen Shot 2016-01-22 at 8.28.45 AM(AACR) and the Philadelphia Media Network. It was the first time that representatives from 6 Cancer Centers across Pennsylvania (Philly to Pittsburgh) were assembled in this fashion. It was a really cool thing because it represents a new frontier of collaboration toward cancer cures.

The first talk was by Dr. Stephen Grupp from Children’s Hospital of Philadelphia. He talked about what’s known as CAR T-cell cancer immunotherapy, a new approach to treating leukemia — where genetically modified immune cells are generating a response rate of 93% among kids with relapsed/refractory leukemia with no other viable treatment options. This type of response is UNPRECEDENTED in cancer. 93% response in heavily pretreated chemotherapy-resistant childhood leukemia, a population destined to die of their disease before this breakthrough — first documented in 2012 and since extended to 200 patients.

After some additional discussion of adult cancers, the meeting was opened up to questions. I jumped in as question número dos. It went something like this, not exactly but close: “I work in the adult cancer field as a contractor to the pharmaceutical industry but volunteer in the childhood cancer community, so I have several friends who have either lost children or whose children are dealing with the late effects of treatment. I know through my work that immunotherapy is moving to earlier lines of treatment much quicker in adults compared with kids. There are obvious reasons for this, including the fact that chemotherapy is not a good option for things like melanoma. And then there are ethical considerations in kids, because of the high response rates to chemotherapy. Chemotherapy may be effective but causes problems later in the form of late toxicity. Although we are not there yet, I was wondering if you could address the prospects for moving immunotherapy to earlier use in children. You mentioned in your talk the possibility of avoiding bone marrow transplants, but can you comment on the possibly of avoiding chemotherapy as well?”

Well, No, I’m not exactly short and to the point. Nonetheless, I grabbed the opportunity to remind the audience that children do still die from cancer while addressing the huge problem of late effects, which include secondary cancers and the need for things like liver and heart transplants later in life. Dr. Grupp already knows these things, but who knows about the rest of the attendees? My assumption was that most of the audience was in tune with adult but not childhood cancer. Late effects are more prominent in children.

The short answer from Dr. Grupp is that researchers are indeed looking to design trials to address the issues that I raised, including the use of immunotherapy before chemotherapy in certain high-risk patients unlikely to benefit from chemotherapy. That was good to hear. That’s a good next step. I know enough to know that if it works in the high-risk patients, testing in low-risk patients may be a logical next step. We are not there yet, key work “yet”. Chemo damages young bodies, we need to do away with it someday — key word “someday”. Again, not there “yet”, but all signs point to “someday”.

It was a large audience, 100s, mostly medical professionals. I had no idea how many childhood cancer parents and advocates were there, if any, when I stood to ask my question. There were over 20 questions from the audience over the course of the meeting, but mine was the only one specific to kids. My Question #2 was the first and only one specific to childhood cancer — how about that? I was glad that I took that opportunity to speak about kid-specific stuff.

854598_1280x720As I was walking out of the meeting, I spotted a very tall guy who stood out because he was so tall. But that face, so familiar. Then it was obvious — it was Devon Still of the NFL. His daughter Leah was treated at CHOP for a poor-prognosis cancer, and she’s currently in remission after a very public battle. Yay Leah! Her dad has been a very vocal advocate for not only her but also other kids; he has done a ton to raise awareness despite such tough days and keeping a busy work schedule. However, parents of kids who have been dealt the blow of childhood cancer should not have to shoulder that burden alone — it’s not fair. People like me, with healthy kids, can and should speak up too. It’s simply the right thing to do. Being a celebrity is not required.

Of all the “Big Ideas” surrounding cancer, I personally think that replacing DNA-damaging chemotherapy and radiation in favor of cutting-edge novel therapies (immunotherapies, among others) is a HUGE one for the kiddos. It’s critical for all patients, but especially the kiddos because of the survivorship issues that stem from the late effects of toxic cancer treatments. Once again, we are not there “yet” — there is lots to learn first — but it is important to work hard today toward that “someday”, when cancer is routinely treated way more effectively AND safely. So I will continue to stand up and speak up, like I did today. I like to talk — I’m loud —I don’t care if I fumble or stumble — I don’t care about who does or does not like my questions — so might as well put those traits to good use!

Author: Laurie Orloski

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Posted in Cancer, Childhood Cancer, Pediatric Cancer, Rare Disease, Uncategorized | Tagged , , , , , , , , , , , , , , , | 2 Comments

A 10 year old, Speaking from Experience

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Natalia Sofia is a childhood cancer survivor. Two years ago, she was only eight years old and diagnosed with Ewing’s Sarcoma of her femur. She has endured surgery, intense chemotherapies and radiation treatments. She suffers from side effects of her life-saving treatments. This is her story written and presented to her school in her own words.

NataliaPresentation _edited-1Did you know that worldwide a child is diagnosed with pediatric cancer every 3 minutes?

Before a child turns 20, about 1 in every 285 children in America will have cancer. Unfortunately I was one of those kids, I had cancer. But fortunately, I am in remission, now and doing very well!

Because of my experience, I think and feel that we need better medicine for the children. The medicine for childhood cancer is from the 1970’s…I know, right?!?  That’s a loooong time ago!  That’s why we need to get chemo that is made for kids, NOT adult chemo. Because the medicine for childhood cancer is really made for adults, that does not mean the kids don’t take it. Childhood cancer medicine is very strong and makes their hair fall off.  We need to donate money, hats, and beanies. I think we should get medicine that doesn’t involve hair falling off.

NataliaTreatmentDid you know that childhood cancer is more deadly than asthma, cystic fibrosis, and pediatric AIDS combined. The month of childhood cancer awareness is in September, the ribbon is gold and people wear gold tshirts to support childhood cancer. But when that month is gone, the awareness is gone and so is all the support from the people wearing the gold tshirts. But that doesn’t mean pediatric cancer leaves…IT DOES NOT STOP.

That’s why I am here today. I am asking YOU to help bring more awareness to our community. What can you do to help raise awareness? You can first promote more research to be done in the community. More research brings better medicines for kids like me. Lastly, you can organize a fundraiser in your neighborhood. We need more funding to help cure pediatric cancer. Most kids don’t die from cancer, they die from the chemo side NataliaSupergirleffects. That is how strong and harsh it is. Chemo side effects are mostly kidney failure, heart failure, and liver failure. And for most part secondary cancers. Also, only 4% of 100% of funds go to funding for childhood cancer research. Let’s make that into a 100%!!!
Put yourself in someone else’s shoes that has been through cancer or is still in it. See what it’s like for yourself. Think about it, seeing and going to doctors almost every day. Missing friends at school. If you have a fever, you’re in the hospital, sometimes for a month! It’s NOT fun. So, if you were an 8year old girl or boy in the hospital on Valentine’s or Halloween or Christmas Day…what would you feel like??

CHEMO DOESN’T STOP FOR THE HOLIDAYS AND NEITHER DOES CANCER.

Author: Natalia Sofia

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