Butterfly Sisters

Seven years ago, Jordan Wetzel lost her little sister, McKenna, to a terminal brain tumor called DIPG.  McKenna was diagnosed with the inoperable brain stem tumor in 2011, and died six months later, just two weeks before her eighth birthday. 

When Jordan was a senior at the Edison High School in Huntington Beach, she was obligated to deliver a senior project. Jordan decided to take the opportunity to share her personal experience in an effort to raise awareness by self-publishing her own book, “Butterfly Sisters: The Life of Pediatric Cancer Siblings.” 

 The assignment was a passion project for Jordan that resulted in a positive impact across the childhood cancer community and beyond. 

She started with sharing her family’s story, telling about her personal struggles with understanding McKenna’s diagnosis, sharing memories and the struggle she faced (and continues to face) after the loss of her only sister.  Then she interviewed other cancer siblings and shared their perspectives in the book, as well.

 Throughout the year, Jordan dedicated 784 hours to writing, interviewing cancer siblings, editing, publishing, and processing her grief through it all.  While healing and cathartic, the process was also emotionally draining on Jordan and her entire family – but she refused to compromise on the quality of her story, because she knew the perspective of cancer siblings is one that is rarely shared, and their stories needed to be told. 

 In May 2017, she told the Daily Pilot, “I feel like cancer siblings don’t get much appreciation when it comes to the cancer world,” describing them as “silent supporters.” “In the headlines, it’s always about the parents and the kids themselves — there’s never talk about siblings.”

 When her parents offered to help, or to review what she had written throughout the process, Jordan explained that she wanted the project to be something she did entirely on her own. 

Butterfly Sisters is an incredible tribute to cancer siblings and the silent battles they fight every day.  It is now available for purchase here. 

Today, Jordan continues to raise awareness and help other cancer siblings through her own experience.  Visit the McKenna Claire Foundation to purchase a book.  http://mckennaclairefoundation.org/product/butterfly-sisters-booklet/ 

 

Jordan is doing something.  Will you?


You can do something, too

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The CBTP Declares September to be Childhood Cancer ACTION Month

In 2012, President Obama declared September to be national “Childhood Cancer Awareness Month.”  As many know, childhood cancer is represented by the gold ribbon, and as a community we have seen the “go gold” movement generate increased momentum.

Although increased awareness = increased funding = increased research = increased success in discovering new treatment options, none of this is happening fast enough for children who are in treatment today.

The Children’s Brain Tumor Project is “Powered by Families,” and among the 50+ families on our family council, the majority are bereaved.  Awareness simply isn’t enough.  This September, we are asking you to take action.

Taking action can be a grand gesture, or a simple post on social media.  Host a fundraiser, sign up for a newsletter, share the facebook page of a child in treatment, read our latest newsletter.  Any action brings us one step closer to progress.

There is a CBTP profile picture frame that can be used for the month of September by visiting www.facebook.com/profilepicframes/ and entering “Children’s Brain Tumor Project Go Gold” in the search nox.  Please consider changing yours to “go gold” for the month of September.  Follow our posts on facebook for ideas on how you can take action this month, and, most of all, we hope you are touched by the individual stories we will be sharing about the children who are part of our family council.  The Children’s Brain Tumor Project is “Powered by Families” and we look forward to sharing their touching stories with you in an effort to raise awareness and increase action.

 

McKenna Still Shines

In January 2011, our healthy, active, intelligent 7-year-old daughter, McKenna, came down with what we thought to be a stomach virus. After a week of doctor visits, seeing her left eye begin to stray and her mouth begin to droop, we insisted on having a CT scan. Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.

It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate. Read more

Dr. Greenfield Invited to Join Englander Institute for Precision Medicine

Dr. Jeffrey Greenfield, Co-Founder of the Children’s Brain Tumor Project, has accepted an invitation to become a standing member of the Weill Cornell Medicine Englander Institute for Precision Medicine. Dr. Greenfield’s formal affiliation with the Institute is in recognition of his work in genomic sequencing of pediatric brain tumors and his ongoing research collaboration with the Institute.

Read More…