by Melanie Goldish
as told to Julie Weingarden Dubin
At age 5 my older son, Travis, was diagnosed with a rare and high-risk form of cancer, Ph+ ALL (Philadelphia chromosome-positive acute lymphoblastic leukemia) and needed a bone marrow transplant to have the best chance of survival. Cancer took a tremendous toll on all of us, but we were determined to choose how we’d respond to our circumstances at every turn, so we’d have some semblance of control. My son Spencer was only 4 at the time, and perhaps this journey was the most difficult for him. When a child has cancer, the siblings need healing, too.
Thankfully, there was one person in the world who was a match for Travis. Through an unrelated donor, Travis received his new bone marrow. It was a roller coaster journey for our entire family. Travis remained cancer-free for 10 years and then he was diagnosed with thyroid cancer. Following surgery and radiation, he again beat cancer. Today, Travis is a healthy sophomore at Indiana University.
One day I asked then 5-year-old Spencer, “How did it feel for you when Travis had cancer?” He said, “Mom, when Travis got cancer it felt like somebody tore my body in half.” I knew my Spencer was hurting. Now I really got it.
I did research and learned that siblings of children with cancer are profoundly affected by their brother or sister’s diagnosis. There are layers and layers of impact. Not only jealousy, but anger, fear, grief, sadness, depression, anxiety, disrupted school, missed activities, additional responsibilities and sometimes moving from home.
Research shows that more than 50 percent of siblings experience post-traumatic stress symptoms and one-fourth of siblings experience what would qualify as post-traumatic stress disorder — unrecognized and untreated! No one was helping the siblings heal on a systematic and ongoing basis. I knew I had to do something about it.
I saw the “walking wounded” look in Spencer’s eyes and in the eyes of so many siblings in the hospital waiting rooms and clinics, but there weren’t organizations to help siblings of children with cancer. I decided to form a national nonprofit to send personalized comfort and care items to siblings of children with cancer, beginning with beautiful personalized courage trophies.
Now, 11 years later, SuperSibs! serves over 33,000 vulnerable brothers and sisters of cancer across the U.S. and Canada sending free, ongoing personal comfort and care items (trophies, journals, books, pillowcases, messages of hope, newsletters and more). SuperSibs! also educates and equips hospitals and cancer support organizations to implement ongoing sibling support as a standard of care now. We also have online, age-appropriate support and a scholarship program — we’ve awarded more than 60 scholarships to siblings entering college.
Research has shown that our support has significantly reduced guilt, anger, aggression and abandonment for siblings, and has significantly increased feelings of validation, belonging, strength, understanding, hope and courage after being in our program. SuperSibs! is important to ensure total family healing.
I moved to Duluth two years ago to be near and help care for my parents, so I stepped down from my executive director role. I’m a business consultant and I teach at the University of Minnesota, Duluth, but I’ll always be the “forever founder” of SuperSibs! and I serve on the honorary board of directors of SuperSibs!.
Motherhood has shown me that everyone is different and wants to be heard. My kids have taught me that we have far more love in us that one can ever imagine. And that nothing feels as good as being loved by our children. I hope I’ve taught each of my boys that they can use their voice to change the world and that one person can make a difference.
Reach out for help. You can give forward later. No matter what happens in our lives, we always have the ultimate freedom — the power to choose how to respond.
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