When Micah was diagnosed with cancer at 15 months old, our family barely knew anything of pediatric cancer, let alone the disease that would immediately become the central focus of our lives: neuroblastoma.
We knew nothing about the brutal treatment that neuroblastoma patients endure every day around the world.
Shortly after Micah was diagnosed, her oncologist told us that we were about to endure the most difficult year of our lives. The standard treatment plan for her type of disease includes chemotherapy, surgery, radiation, and immunotherapy. Stubborn disease as well as side effects and complications brought on by treatment meant that Micah’s plan also included additional therapy and medications. On top of the immediate effects of treatment, we also worried about the long-term effects of chemotherapy, radiation, and the overall treatment plan.
The oncologist was right that Micah’s treatment was the most difficult thing we had ever faced. She was, however, wrong about the duration. She did indeed endure a year of difficult treatments, and she was declared to be nearly disease-free a little more than a year after treatment began. But the tenacity of her disease stretched out treatment to a year and a half. During the very last week of her planned treatment, at age 2½, a relapse was discovered in Micah’s leg.
There’s no standard treatment plan for relapsed neuroblastoma, and no known cure. We had been told early on that less than 10 percent of relapsed patients with Micah’s type of disease - high-risk neuroblastoma - survive. Although we were nervous what that would mean for our family’s future, we were more angry that any family has to face that kind of news. A less than 10 percent chance for a few more years of life is not good enough for a child facing neuroblastoma or any cancer. We knew that we couldn’t do much about our anger, but that the best way to address it was to help change the critical lack of funding for pediatric cancers.
Micah's team successfully treated not only that first relapse, but a second relapse as well. After nearly 2½ years of almost-constant treatment, Micah was declared to have no evidence of disease for the third time. However, the aggressive nature of her disease meant that neither we nor her doctors were prepared to stop treatment. Micah remains on a maintenance therapy to increase her chances of remaining disease-free.
Every step of Micah’s treatment - especially since her first relapse - has depended heavily on researchers who have worked to develop treatments that are less harmful and more effective and whose work continues today. Micah has been involved in several studies seeking both to keep him disease-free and to provide data to help guide future research. The Mighty Micah’s Mission Fund was established to support the researchers and doctors who are working to better understand neuroblastoma, how to treat it, and how to minimize the often-brutal side effects caused by the current standard of care.
Please join us in supporting research that will allow future neuroblastoma patients to have more and better options to treat their disease.
Donations given to the Mighty Micah's Mission Fund have funded a St. Baldrick's Fellow grant for Micah Maxwell M.D., Ph.D. at Johns Hopkins School of Medicine in Baltimore, MD. Dr. Maxwell is investigating the abnormal metabolism of neuroblastoma in order to uncover new potential therapies.
The St. Baldrick's Foundation is guided by a Scientific Advisory Committee, comprised of leading experts in the childhood cancer community, to ensure that every dollar makes the greatest impact for kids with cancer.
These people make us smile - they’re the doers and money-raisers on behalf of Mighty Micah's Mission Fund. They’re shaving their heads, hosting events, starting fundraisers and more to make childhood cancer research possible.
Start your own St. Baldrick’s head-shaving event to raise money on behalf of our Hero Fund! You’ll be paired with a staff member who will walk you through every step of the process, and you’ll have fun knowing you’re doing a great thing for kids with cancer.
Register to shave your head and raise money for our Hero Fund at any St. Baldrick’s event happening around the world! Not finding an event near you? Register as a virtual shavee and shave your head anytime, anywhere.