Childhood Cancer Survivors Center focuses on what comes after the cure

No parent wants to hear their child has cancer.

But the chances they’ll survive this life-changing diagnosis continue to climb, now reaching 80 percent nationally. By the end of the decade, about 700,000 people will be childhood cancer survivors nationally, experts says. But that survival, because of very aggressive treatments, comes with its own risks.

At the University of Chicago Childhood Cancer Survivors Center, teams of specialists are focusing on those long-term risks, including second cancers and damage done to organs and the endocrine system, kids’ psychological needs and the impact cancer has on the family. At the same time, U of C’s academic program is trying to identify the risks of treating childhood cancers and finding ways to minimize the effects, says Dr. John Cunningham, section chief of pediatric hematology/oncology at the University of Chicago Comer Children’s Hospital.

“We are learning from those patients so they are altruistic as well … so that we can identify these problems and then for the new children who are being diagnosed we can tailor their therapy to ensure we reduce the risks as much as possible of the long-term effects,” he says.

Doctors at the survivors center collaborate with other nationally recognized centers to better understand the long-term impact of childhood cancer on children and develop new ways to deal with the problems before they occur, he says.

The center is exactly what kids like Zayla Mitsdarffer need.

The Bonfield first-grader has been battling cancer since she was diagnosed with leukemia at age 3. Doctors at U of C got her cancer into remission by the 21st day of treatment, but infections nearly killed her, her mom, Chris, says."She’s been through a lot. She was a real sick little girl at the beginning.”

When Zayla relapsed in December 2006, the family faced a choice of more chemotherapy or a bone marrow transplant. They chose a bone marrow transplant. The Mitsdarffers stored cord blood from a set a twins Chris lost just before Zayla relapsed, which proved a perfect match. Her sisters, Shelby and Maddie, also were a perfect match."We were lucky, fortunate. It was amazing,” Chris says.

Doctors picked 14-year-old Shelby as the donor. Chris says Shelby was excited to help save her little sister’s life; her only question the day of the transplant brought tears to Chris’ eyes. She asked,"If this doesn’t work, is it going to be my fault?”

The transplant worked.

When the time comes, Chris plans to use the integrated approach to Zayla’s care at the survivors center, which is for any pediatric and adult survivors of childhood cancer diagnosed before age 21 who are at least two years past any cancer therapy.

Prior to the survivors center, kids generally saw their oncologist yearly, but after time went on many stopped. Now kids and their families have specialists who will focus on them the rest of their lives, says Dr. Tara Henderson, medical director of the survivors center. Henderson and her team also take away some of the fear of the unknown by analyzing a child’s treatment and developing risk screenings and educating the family and their primary doctor about those risks.

Henderson says she’s had parents with children who develop major health problems after their cancer treatment tell her they feel like they have a place now where some of the problems can be explained to them.

“I know there is always going to be the problem of other effects,” says Chris Mitsdarffer, who is training to be a nurse working with kids with cancer.

Chris wants Zayla, who she describes as kind-hearted and always thinking of others first, to be thankful she survived."I’d like her to learn from this and maybe reach out to others.”

Zayla, now that she’s healthy, is looking forward to going back to school and getting to eat fresh fruit and ice cream again.

“I just thank God that we have her every day, that she made it through it,” Chris says.

A team approach

The University of Chicago Childhood Cancer Survivors Center takes a team approach in helping survivors and their families no matter their age or where they initially received treatment. The teams include:

• Developmental pediatrician

• Neuropsychologist

• Nurse practitioner

• Pediatric cardiologist

• Pediatric endocrinologist

• Pediatric oncologist

• Radiation oncologist who is an expert in pediatric cancers

• Reproductive endocrinologist specializing in fertility preservation and infertility

• Social worker

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