Please Consider Helping Childhood Cancer Families This Mother’s Day

The Mother’s Day traditions of paper cards and handmade crafts will not be the current reality for all families this year. We know that an inside look into the reality of Mother’s Day may include a family celebrating a child’s successful, but excruciating cancer treatment. We also know that other scenes are filled with moms comforting a sick child in a hospital or even worse, moms shielding a broken heart in the empty silence of a house that, at one time, used to be full of chaos and noise. This unfortunate depiction is often the sad reality left in the devastating wake of childhood cancer.

As we approach what should be a holiday filled with the overwhelming joy of motherhood, we ask that you please take a moment to not only think about these moms and their children, but to share a donation by clicking here or the button below, so that we may help them now.

The American Childhood Cancer Organization (ACCO)provides help through our resources while a child is going through cancer, as a family navigates the terrifying journey they are now facing. With your help, over the past two years alone the ACCO has distributed over 77,000 individual free resources to families across the nation! While we also assist with advocacy efforts that lead to better funding for research, we know the importance of needing a hand to hold during the scariest times in a mother’s life. We can’t support these families without you. Through your donation, you are joining hands with thousands of mothers who need to know they are not the only ones advocating for their child’s life.

Part 1 – “A Mother’s Journey” – The Story of a Mother’s Journey While Having a Child with Cancer

This Mother’s Day, we have been given special permission to share a childhood cancer mother’s desperate and heart-breaking story. Cyndie French is finally ready to let the world know what really happened behind the Pulitzer Prize winning photographs that left lasting impressions in so many of our hearts and minds. It is an honor that Cyndie has given the ACCO the opportunity to help provide a raw glimpse into what living the reality of a childhood cancer mom looks and feels like. Please be advised that this story may contain photos and content that are graphic in nature. Viewer discretion is advised. 

Eleven years ago, on May 11, Derek Madsen passed away after a long struggle with an aggressive type of childhood cancer, neuroblastoma, at the age of 11. That year—2006—May 11 was just a few days before Mother’s Day. On that day, Derek’s mother, Cyndie French, was forced to make the most difficult decision a mother can be asked to make: the decision to let her son go, to help Derek take his final breath. So, it seems only appropriate that we begin this special multi-part series on Derek and Cyndie honoring a very brave childhood cancer mother, eleven years after Derek passed away in the loving arms of his family.

Cyndie’s story has been public for quite some time, thanks in large part to a series of heart-wrenching Pulitzer Prize-winning photos taken during the final year of Derek’s life by photographer Renée Byer of The Sacramento Bee. Yet although Cyndie’s story has been co-opted by others on a number of occasions, Cyndie has never told her own story until now. Cyndie has agreed to partner with the American Childhood Cancer Organization (ACCO) to share her story, finally from her own perspective, about the financial struggle and emotional turmoil that she experienced while coping with Derek’s diagnosis, through the treatments, to the end of his all-too-short life.

The Financial Consequences of Childhood Cancer

Cyndie’s goal in sharing her story exclusively with ACCO is to raise awareness about the devastating consequences of a childhood cancer diagnosis on the family. It is easy to discuss the need for greater research into finding a cure for childhood cancer but can be difficult to face the grim realities that families go through—physically, emotionally, and financially—after a cancer diagnosis. Like ACCO, Cyndie’s goal is to shine a light onto those problems, in the hope that bringing this light will also bring a solution: more financial and emotional support for families coping with a cancer diagnosis.

At the time of Derek’s diagnosis, Cyndie was a single mother of five children and was the successful owner of a local salon. Yet eventually, Cyndie realized that she could not continue working, handle Derek’s medical needs, and care for her other children. So Cyndie gave up her job and sold her salon in order to dedicate herself full-time to Derek and his siblings. This decision led to critical financial problems, and at times, Cyndie found herself wondering where she would get the money to pay her rent or buy her children’s next meal. In sharing her story, she hopes to raise money to help other families who, like her, are forced to give up everything in order to care for their sick child.

ACCO’s Multi-Part Series

Over the next several months, ACCO will chronicle Cyndie’s story, from her own perspective. In this multi-part series, we will attempt to offer a comprehensive view into what family life is like during treatment for an aggressive and ultimately terminal case of childhood cancer. Cyndie’s story will include the financial consequences of a cancer diagnosis, the challenge of caring for siblings and maintaining a supportive family structure, the difficulty of helping her child cope with hospital stays and treatment protocols, and the gut-wrenching discussions and decisions that must be faced as treatment fails. In each segment, we will share Cyndie’s goals for helping families cope and share information about ACCO’s mission of support and assistance as well.

Warning: this story is not an easy one. It will be a graphic and honest portrayal of Cyndie’s experiences during and after Derek’s treatment and death. Moreover, our series will incorporate Renée Byer’s award-winning, and at times graphic, photos chronicling Derek’s treatment and death, as well as Cyndie’s emotional journey during this difficult time. These photos may also prove difficult for some of our readers.

“A Mother’s Journey”, by Renée Byer, The Sacramento Bee

Right from the start, Cyndie would like to thank Renée for the dedication, care, and compassion that she has brought to this story. During the year of Derek’s treatment, Renée became more than simply an interested third party, she became a friend. Both Cyndie and Derek came to trust her and welcome her into their lives, even during some of life’s intimate moments. As her photos show, Derek was often angry, frustrated, and scared during his treatment, refusing help from everyone but Cyndie, yet he came to realize that Renée was there to share his story and to honestly and appropriately capture his feelings. ACCO would like to thank Ms. Byers for allowing us to incorporate these amazing photos into our series on Cyndie and Derek.

*All photos are the intellectual property of either The Sacramento Bee or Cyndie French. Any attempt to duplicate or use without prior written permission will result in legal recourse.

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO promotes the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer.  And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.

Thank you

ACCO, as a founding member of the Alliance for Childhood Cancer would like to sincerely thank the more than 200 members of the childhood cancer community who gathered together in Washington, DC on May 1st and 2nd to advocate on behalf of the childhood cancer community. Your support, your dedication, and above all, your passion during those two days helped to bring us closer to our goal of ensuring that childhood cancer is recognized and acted upon as a national child health priority.

We would also like to thank the Members of Congress who have agreed to add their names as co-sponsors to the Childhood Cancer STAR Act and support for including language from the RACE for Children Act in the FDA User Fee Bill (PDFUA). We want to also give an especially big “Thank You” to those Senators and Representatives who took time out of their busy schedule to meet with us, to listen to our stories and to understand the critical importance of these bills to our families. Specifically, we would like to thank:

• Representative Michael McCaul (R-TX), who stopped by to show his support during Monday’s advocacy training; Representative McCaul has been the lead House Sponsor for the STAR Act and is co-chair of the House Childhood Cancer Caucus.
• Senator Jack Reed (D-RI), who shared his words of wisdom with us Tuesday morning as we headed off to a day of meetings with our Members of Congress on “The Hill”.

Finally, we would like to thank:

• Thomas Rice, Senior Health Advisor to Congressman McCaul for his thoughts and advice on the STAR Act;
• Rita Habib, Senior Health Advisor to Senator Michael Bennet (D-CO) for her thoughts and advice on inclusion of language from the RACE for Children Act into the FDA User Fee Bill (PDUFA); and
• David Pugach, Director of Federal Relations for the American Cancer Society Cancer Action Network (ACS CAN).

Thank you for giving us a deeper understanding of these two critical pieces of legislation and for sharing your advice on successful advocacy strategies.

2017 Action Days Goal:

Cosponsor the Childhood Cancer STAR Act; Include language from the RACE for Children Act in the FDA User Fee Bill (PDUFA); and Increase FY 2018 funding for the NIH and NCI!

The goal of the 2017 Childhood Cancer Action Days was to give members of the childhood cancer community, including parents, children with cancer, survivors, healthcare professionals and advocacy groups the opportunity to learn and implement effective advocacy approaches specifically relating to childhood cancer. This two-day event started with a day of formal advocacy training where participants learned critical “tips of the trade” from experienced advocacy experts within the childhood cancer community. On Tuesday, after an inspirational breakfast meeting, participants were off to “The Hill” to meet with their Members of Congress and staff in person to share their stories and show their support for childhood cancer issues currently pending before Congress.
During these amazing in-person meetings, advocates focused on three very specific requests:

(1) Co-sponsor the Childhood Cancer Survivorship, Treatment, Access and Research (STAR) Act (H.R. 820/S. 292). This is the most comprehensive childhood cancer act ever taken up by Congress and has enjoyed broad bi-partisan support; it was passed unanimously by the House of Representatives in December 2016 and needs to pass in the House and the Senate during the current administration.
(2) Support a FY 2018 $2 billion increase for the National Institutes of Health (NIH). Supporting this increase will help maintain the momentum of federal funding approved by both the House and the Senate in 2016 and the recent $2 billion increase in FY ‘17.
(3) Include the RACE for Children Act in the FDA User Fee Bill (PDUFA). This would give the FDA the authority to require any new cancer drug to be studied for its effectiveness for pediatric cancers for which the molecular target of the cancer drug is relevant.

Advocacy is Ongoing: Keep the Pressure On!

2017 Action Days are over, but the fight for the Childhood Cancer STAR Act and the critical provisions in the RACE for Children Act goes on and will not stop until we achieve our goal! Whether you attended 2017 Action Days or are interested in adding your support now, you can add your voice to the growing chorus of support for these two critical pieces of legislation. If you would like more information on the Childhood Cancer STAR Act and the inclusion of the RACE for Children Act within the FDA User Fee Bill, or would like to contact your Members of Congress to request their support, we invite you to visit https://www.acco.org/takeaction/ for our easy-to-use advocacy tool!

About American Childhood Cancer Organization

American Childhood Cancer Organization (ACCO) is a non-profit charity dedicated to helping kids with cancer and their families navigate the difficult journey from cancer diagnosis through survivorship. Internationally, ACCO is the sole U.S. member of Childhood Cancer International (CCI), the largest patient-support organization for childhood cancer in the world. Here in the United States, ACCO is a founding member of the Alliance for Childhood Cancer. Together, we work to promote the critical importance of ensuring continued funding into new and better treatment protocols for childhood cancer. And most importantly, ACCO is focused on the children: developing and providing educational tools for children fighting cancer and their families, empowering them in their understanding of childhood cancer and the medical decisions they must make during this difficult journey. All of ACCO’s resources are available free of charge for families coping with childhood cancer.

For additional information about childhood cancer or on ACCO, or to order resources for you or your child, please visit our website at www.acco.org.