​2019 Honored Patients: Clara & Edison

Few patient/family stories in recent years better represent the mission, research and patient care that can be traced back to the Pine Tree Apple Tennis Classic than that of Clara and Edison of Bemidji, Minnesota.

When Clara, now age 9, was 15 months old, her parents felt a lump on her side. An ultrasound quickly showed what was believed to be Wilms tumor on her kidney and they were immediately directed to Children’s Minnesota in the Twin Cities. At that point Clara’s mom, Amanda, said the frst of many “miracles” occurred.

“We were so blessed to have Dr. Yoav Messinger on call that evening. In the course of him asking us background questions, I casually mentioned that my older sister had what we would later find out was PPB (Pleuropulmonary Blastoma). Immediately, Dr. Messinger went down a new line of questioning based on his knowledge and experience of the disease through Children’s Minnesota's and his involvement in the Pine Tree Apple Tennis Classic. Instead of Clara being treated for Wilms tumor and having her entire kidney removed, Clara was diagnosed with Cystic Nephroma and her kidney was saved with surgery.”

Clara had the DICER 1 link. With their family history, Amanda and Justin's children would all need to be all screened. When Clara’s little brother Edison or “Eddie” was born he too had the DICER 1 mutation. Fortunately, their older son Charlie (10) does not carry it.

“When Eddie was 11 months old, scans showed a small tumor in one of his lungs. A month later he had surgery. Because it was localized, the surgeon was able to remove the tumor completely. Later on, another small tumor appeared on his lung and our “second miracle” occurred. That tumor eventually disappeared on its own and there is no sign of the cancer now.”

Today, both kids are doing great. Clara is going into 4th grade, is outgoing and a huge sports fan. She loves participating in basketball and softball and cheering enthusiastically for the Minnesota Twins. Her love of life and her pride at being a cancer survivor show through to all around her.

Eddie is now 3 and, like his older sister, is extremely outgoing. He’s very aware of everything going on around him and loves doing anything outside, particularly if it involves his older brother Charlie who he worships.

Clara and Eddie's family is extremely thankful for the care they continue to receive at Children’s Minnesota under the direction of Dr. Kris Ann Schultz. “How do you put it into words?” said Amanda.

“We know we are very blessed and so lucky to be seen by the doctors and nurses and researchers that take care of our kids, particularly given their expertise with PPB.” Amanda also wanted to thank all the supporters of the Pine Tree Apple Tennis Classic. “We know that our kids' good health is tied to the great work that results from the funds that are raised here.”