KSON Going Gold for Micah

September 29, 2016

Micah was diagnosed with Stage 4, high-risk neuroblastoma in March of 2012, on the day that he turned 15 months old. The diagnosis came after we took him to the doctor for shortness of breath, which was initially diagnosed as pneumonia. When an overnight stay and treatment at Rady Children's Hospital didn't lead to any improvement, the doctor ordered a CT scan of his chest. That scan showed there was definitely pneumonia, likely due to the tumors in his lungs, and that there was also a tumor in his abdomen. We soon learned that he also had cancer in bones in both arms and both legs, as well as his pelvis.

Micah's doctor laid out a year-long treatment plan that was to include several rounds of chemotherapy, surgery, radiation, and immunotherapy, and which started with a three-week hospital stay. Because Micah's disease was stubborn, his team added an additional therapy that involved traveling to Philadelphia and injecting radioactive isotopes into him to attack his disease from the inside out. It wasn't easy, but Micah handled just about everything better than his doctors expected. He finally was declared to be in partial remission in May 2013.

Between August 2013 and January 2014, Micah relapsed twice, with the first one discovered during the very last week of his scheduled treatment. The first relapse deformed his left femur, leaving his leg about an inch shorter than the right and earning him a half-body cast while he healed. Both relapses required more chemo and radiation, and the second added two more surgeries. Micah was declared to have no evidence of disease most recently in August 2014. The statistics for relapsed neuroblastoma are brutal, with less than 10 percent of patients surviving, but we're working hard to help Micah - and researchers - improve those numbers.

Today Micah remains on a maintenance therapy that is easy on him but that hopefully improves his odds of staying disease-free. All of his treatment since the first relapse has been directed by - and often administered - by his team at Children's Hospital Los Angeles. Micah's current treatment can be administered locally, so he goes to Rady for an outpatient treatment visit every three weeks. He'll have scans again in mid-October to see if anything has changed.

Thankfully, Micah's maintenance therapies over the past two years have mostly let him live a normal life. He traveled to Los Angeles frequently, sometimes for five-day hospital stays, but during the rest of the time he was able to be active, attend school, play with friends, and catch up on being a normal kid. He's now 5 1/2 and loving kindergarten. He reads everything he can get his hands on and is currently obsessed with the musical "Hamilton." His older brother, Asher, has handled the disruption and craziness of the last 4 1/2 years better than we could have expected. He's even educated his classmates about pediatric cancer each year and has raised several thousand dollars to support pediatric cancer research, supporting a fund our family established through the St. Baldrick's Foundation to fund neuroblastoma research. 

You can learn more about Micah and donate to his fund here