neuroblastoma

Almost four weeks after Justin beat cancer for the sixth time, his latest scans revealed cancer in his bone marrow. Photo: Silver Kite Photography

Once again, we have found out, after just a few short weeks of being cancer free, that Justin’s cancer is back in his bone marrow and possibly two lymph nodes in his neck and collar bone.

We are beyond shocked.

Four weeks. That’s all we got out of this celebration. I know that each day of the past seven years has been borrowed time — Justin miraculously survived induction chemo and transplant, and I know they didn’t expect him to. He has survived cancer relapse after relapse, setback after setback, all by the miracle of God.

But I am not ready to stop spending my days with him. I am not ready to give up.

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Email your members of Congress today to tell them to cosponsor the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act.

The Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act:

• Expands childhood cancer research
• Improves the tracking of childhood cancer cases, and
• Conducts a federal study into barriers for developing new drugs for kids with cancer.

Email Congress

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10-year-old Justin Miller was diagnosed with neuroblastoma in 2006 and has just beaten cancer for the sixth time! Photos: Silver Kite Photography

OK, you might want to sit down for this one. No, maybe stand up. Maybe sit and then stand?

Justin’s official scan results are in…Drum roll, please…

Justin has officially beaten cancer #6!

Justin is currently 100% cancer free.

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Jenna was diagnosed with neuroblastoma, a type of childhood cancer, when she was 1 year old. Photo by Flashes of Hope.

Our lives were forever changed on December 2, 2010, when our 13-month-old daughter, Jenna, was diagnosed with stage IV high risk neuroblastoma.

The first few days of being in the hospital were grueling as the medical staff ran multiple scans and tests, trying to determine what type of cancer Jenna had. Honestly, those days are all a blur for my husband and me. James had just returned safely from his military deployment to Iraq, and now all we could do was wait as our baby girl geared up for her own battle here at home.

But once we received the official diagnoses and a treatment plan was in place, fight mode kicked in. We were ready to start kicking cancer’s butt!

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In 2008, David was diagnosed with neuroblastoma, a type of cancer in children. Cancer took David’s life three years later, when he was 10 years old. David’s mom, Susan, writes this letter to her son.

Susan and David on his 8th birthday in 2008, before he was diagnosed with childhood cancer.

It is your 13^th birthday today. I remember the day you were born like it was just yesterday. I started writing you a birthday letter at your first birthday because there was so much I wanted you to know about YOU and how you impacted our lives so deeply. My plan was to share the letters with you when you headed off to college. They were intended to remind you of where you came from, how much you are loved and to encourage you to keep growing and exploring.

For your 10^th birthday letter, I decided to read it out loud to you because it would be your last birthday. I couldn’t get through it, and you took the letter from my hands and read it. It made me so proud — you were fearless in the face of the worst news.

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Top row (L-R): Trisha, Beth, TeNeil, Misshay, Ericka
Bottom row: Jessica, Renee, Stephanie, Vanessa, Jordan
Photos by Ali Parker Photography

Each one of these moms has heard the words, “Your child has cancer.” Their kids’ cancer journeys brought them to the 10th floor of the University of Oklahoma Children’s Hospital. There in the halls of the pediatric oncology unit, friendship grew. Stronger together, they became 10 Strong.

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Susan, Tom, Daisy and David in 2010

My husband Tom and I, we don’t mind paying taxes — it really is a privilege to live in the United States. But who knew that our taxes this year would be just one more way we felt raked over the coals after losing David to childhood cancer?

This year, after making it through the second anniversary of David’s passing from neuroblastoma, Tom sat down to fill out our tax forms while I sat at my desk doing work I love. He passed by my door, and I showed him how organized I’ve been with charitable gift receipts this year. When David died, we started giving away a lot more. Tom said that was good because we needed all the deductions we could find.

That surprised me. “Why do we need all the deductions we can find?” I asked. I make less money now than I did when David was alive, so I thought that would actually help in the world of our taxes. Tom’s eyes got teary as he looked at me and said,

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A little more than a year ago we were experiencing this same MIBG therapy for advanced-stage neuroblastoma in New York. We hope we are more prepared this time.

Justin fully understands what the next few days will bring: the lead-lined room, the isolation, the feelings of being a “caged animal” where whatever goes in, can’t come out. We’ve talked with him about how restricted Grandma and I will be from being able to take care of him, touch him, hug him and love on him.

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Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer).

Dr. John M. Maris, SU2C – St. Baldrick’s Pediatric Dream Team Leader

Even before he started medical school, physician and scientist John M. Maris, MD, was interested in neuroblastoma, a cancer that starts in young nerve cells and can spread quickly through a child’s body. It is one of the most common cancers in children, and the most common cancer in infants.

As he continued studying the disease, Dr. Maris became convinced that neuroblastoma was a genetic disease and that genetic research could unlock new treatments for kids with cancer. Since then, Dr. Maris has devoted his career to curing neuroblastoma, a passion that has fueled over two decades of research.

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Formerly known as the St. Baldrick’s – Stand Up to Cancer Pediatric Cancer Dream Team, this team is now the St. Baldrick’s EPICC Team (Empowering Pediatric Immunotherapies for Childhood Cancer).

Curative chemotherapy for cancer was first realized in children. Survival rates for many of the common cancers in children improved dramatically through the last part of the 20^th century. However, those cure rates have plateaued since the 1990s, and for some childhood cancers, we have seen little to no improvements.

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