Nick Wolf, Primitive Neuroectodermal Tumor (PNET)

7 Years Old at Diagnosis

Nick WolfIn May 2011, Nick Wolf was experiencing a persistent headache and nausea. His mother, Christina, took him to the doctor who informed them that she suspected Nick had a brain tumor, but that they should monitor his symptoms to see if they persisted. The headaches and nausea continued and one day Nick started uncontrollably clenching and unclenching his hand. His mom took him back to the doctor, and an MRI was ordered.

The family tried to schedule an MRI, but were told that they would have to wait several days for the procedure. When Nick’s pain became unbearable, they rushed him to the hospital where their worst fears were confirmed. Nick had a 5cm Primitive Neuroectodermal tumor (PNET) on the right side of his brain that would require surgery, radiation, and chemotherapy. The family prepared for surgery and the months of treatment that would follow. Luckily, their surgeon was able to remove the tumor completely, significantly increasing Nick’s chance for beating cancer.

Nick WolfAfter the surgery Nick was discharged from the hospital to recover before starting radiation and chemotherapy. When Nick went home, he was too weak to walk unassisted, but was determined to get stronger before treatment started. He began playing Wii Fit to help regain his strength and within a few weeks, he was walking on his own.

After 6 rounds of chemotherapy and 31 radiation treatments, Nick completed his treatment in March of 2012. His family worked on getting back to normal, but in December of 2012 a follow up MRI showed tumor growth. At 8-years-old, Nick underwent his second craniotomy in January of 2013 and began radiation. In March he joined a clinical trial aimed at treating relapsed brain tumors. So far his treatment is going well, his MRIs are stable, and his parents are hopeful.

Throughout his journey with cancer, Nick has remained positive and shown his family a strength that they didn’t know he had.

Update: May 2017

Nick tolerated the trial very well for 15 months. He then developed an autoimmune disorder. It did not respond to standard treatments. It could not be determined if his cancer treatments were an issue, so after 18 months, his chemotherapy treatments were stopped November 2014. Unfortunately, he relapsed quickly. He now had a large tumor snaking through the right side of his brain, and 2 smaller tumors on the left. Because of the autoimmune disorder, he did not qualify for any trials, and he was placed on hospice care. Nick was a fighter though and amazed his doctors. He finally passed away May 10, 2015.

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