Mom finds comfort in cancer research team after rare diagnosis

This is a guest post by Kim Sondergard, whose son Tony was diagnosed with cancer when he was a few months old. The Sondergard family recently attended the 2012 PPB Family Meeting at Camp Courage.

My son Tony’s entry into this world was a bit bumpy.

He was born with a fever and pneumothorax (air pockets) in both lungs. Doctors and nurses tended to him for four days in the special care nursery. When he was fever-free and able to keep his body temperature within a normal range on his own, my husband and I were able to take our baby boy home. For four months, Tony was healthy.

He developed a cough and a fever, so we took Tony to his pediatrician. A chest X-ray showed what his pediatrician thought was a cyst. It was thought to be a congenital cyst and could be removed through surgery. Tony was admitted to Children’s Hospitals and Clinics of Minnesota, where he had surgery. From his nurses, to his pulmonary team, to the surgeons, to his anesthesia team – everyone rocked!

During our follow-up appointment with the surgeon two weeks later, we learned that the cyst that was removed was abnormal. Our baby had cancer. It was a rare form of childhood lung cancer called pleuropulmonary blastoma, or PPB. I didn’t know how to react.

Tony

The surgeon made an appointment for us to meet with Dr. Yoav Messinger, an oncologist who specializes in this type of cancer and is among the personnel at the International Pleuropulmonary Blastoma Registry. The PPB Registry is a collection of physicians, scientists and data analysts from many institutions, including Children’s, who have been working together for 20 years to evaluate PPB cancer cases.

Dr. Messinger gave us a deeper understanding of Tony’s cancer, and he explained the treatment options. Unfortunately, there wasn’t significant research on treatment options because this cancer was so rare. At the time of our meeting with Dr. Messinger, we also were introduced to Gretchen Williams and Dr. Jack Priest – also part of the PPB Registry.

Tony’s dad and I, as well as our relatives, provided the PPB Registry with DNA samples for a genetic study. They have found in many cases children with PPB carry the DICER1 gene. However, no one in his family, including Tony, carries this gene.

Tony

Dr. Messinger, the Medical Director of the PPB Registry, knows genetic testing needs to continue. “If we can determine in advance which children are at risk for PPB, we will do our best to try and diagnose PPB when it’s in the earliest, most curable stage.”

Two months after Tony’s diagnosis, a CT scan indicated another spot on his right lung. We decided at that time we’d proceed with chemotherapy. Dr. Messinger and Dr. Priest also recommended the spot be removed. Ultimately, we learned it was scar tissue – not cancer.

For an entire year, Tony underwent weekly chemo treatments. He also had CT scans every three months. None showed recurrence.

This past May, Tony celebrated his third year of being cancer free. Next month, he turns 5. He’s happy, active and healthy – all a parent wants for her child.

I would not have gotten through Tony’s diagnosis without the staff at Children’s and the PPB Registry. They were there step by step.

I believe in and support the continued research of the PPB Registry, so they can determine PPB’s cause and how to cure it. Not all kids diagnosed with PPB are as lucky as Tony.

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