Anni's Army Foundation was started by Mark and Lynn Meier to honor their daughter Annika. Annika (Anni) was diagnosed with a medulloblastoma brain tumor on June 30, 2021. Medulloblastoma is a brain tumor of the cerebellum. The cerebellum controls balance and coordinated movements. The cerebellum is found near the brainstem in a region called the posterior fossa at the back of the brain. This fast-growing tumor can spread to other areas of the brain and spinal cord through cerebrospinal fluid (CSF). About 500 children in the United States per year are diagnosed with a medulloblastoma tumor. To us, that is 500 too many.
After a 12-hour brain surgery on July 2nd to remove the tumor, Anni developed posterior fossa syndrome. Children with posterior fossa syndrome usually have a collection of symptoms. The most prominent symptom is limited or loss of speech. Although children lack expressive speech, they may be able to process and understand information. Other symptoms of posterior fossa syndrome include changes in speech, movement, emotions, and behavior. The syndrome develops in roughly 25% of all children who have brain surgery. Posterior fossa syndrome is not completely understood. Doctors don’t know exactly why this condition affects some children and not others. Although certain factors may increase the risk, posterior fossa syndrome cannot be predicted ahead of time. There is no known cure for posterior fossa syndrome,
and the course of recovery varies widely.
After brain surgery, 31 radiation treatments, six intensive chemotherapy regimens and learning how to swallow/eat, talk and walk again Annika was unfortunately diagnosed with radiation necrosis in May 2022. Radiation necrosis is a very rare, but devastating side effect of high-dose radiation that results in permanent death of brain tissue. Annika’s necrosis site is at her brainstem and has caused severe deconditioning. While we pray it is not permanent, Annika does have a quadriplegia diagnosis. After another inpatient admission at Mary Free Bed during the fall of 2022 we transitioned her to intensive outpatient rehab. After two years of homebound schooling, Annika was THRILLED to return to in person schooling for her 8th grade year in August 2023! She is currently on a modified school day, taking core and elective classes and remains in outpatient rehab.
The harsh reality is that there will be ongoing, long-term physical, cognitive and neurological challenges for Annika. Annika does have permanent high frequency hearing loss and esotropia in her left eye, which may or may not be corrected. Research shows that those afflicted with PFS (especially severe PFS) have Challenges beyond 5+ years from onset with intellectual function, processing speed, working memory and spatial relations, among other items. All of which can affect most aspects of everyday life. Despite the potential for many obstacles in the future (relapse or recurrence, late effects of treatment, secondary cancer, fertility issues) we refuse to see Annika’s future as anything but bright even if it looks different than “normal”.
After all, we still have our girl!!!
We will continue to advocate for her health and safety (including whatever treatment or rehab is
necessary), to care for our boys who have been absolute rocks through all of this, to manage
Anni’s Army Foundation and to make ourselves available for support or a shoulder
to lean on for those going through something similar.
Anni's Army Foundation was formed to raise money for the research of medulloblastoma tumors and other pediatric cancers and make a positive impact on the community.