Our story begins with a parent-teacher conference in October 2012. Leah’s third grade teacher expressed concern that our daughter’s voice is difficult to hear. Honestly, my husband and I weren’t surprised. We were always reminding Leah to “speak up” when talking to adults. Her speech was clear, and her voice sounded mildly hoarse when she shouted on the soccer field. We simply assumed our Leah had a quiet voice. Following the conference, the school’s speech-language pathologist recommended that we consult an ENT. On Tuesday, November 6th, we met with the ENT that removed our daughters’ tonsils and adenoids in the fall of 2009. He numbed Leah, inserted a scope, and determined that one of Leah’s vocal cords was not working. Leah was diagnosed with vocal cord paresis. After ruling out trauma, the doctor explained that the paresis was likely congenital. We were referred to a specialist who confirmed Leah’s diagnosis. The specialist explained that it was highly unlikely that Leah’s vocal cord was damaged during the tonsillectomy and adenoidectomy and recommended an MRI. Less than two months later, following an MRI on December 18, 2012, we were informed that Leah has a mass on her brainstem. That same day, we met with the neurosurgeon, Leah was admitted, and steroids were administered in preparation for brain surgery. December 21, 2012, Leah was eight years, eight months, and eight days old, when we kissed our girl goodbye as the nurses rolled her away for a six hour brain surgery.
The end result was a minimal resection, and a diagnosis of high-grade glioma. Leah was discharged on Christmas Eve, with plans in place to immediately begin radiation and chemotherapy. Despite the circumstance, we felt blessed to be home with our girls for Christmas. On December 26th, struggling with the decision to travel during a winter storm, we took Leah to Dr. Issam Nemeh for prayer. The very next day, we received news that pathology results from the surgery were misleading, and Leah did not have a high-grade glioma. Instead, her diagnosis was ganglioglioma, a slow-growing, low-grade tumor. This was, without doubt, a blessing.
Sadly, Leah’s tumor is malignant due to the location; therefore, she began a year of low-dose chemotherapy (Vinblastine and Carboplatin) in January 2013. During this year, the tumor did not change. In January 2014, Leah’s condition was considered stable, and she would continue to have an MRI every three months to monitor the tumor. In May 2014, Leah began to vomit regularly, without nausea and without warning. Leah’s tumor, positioned near the brain’s vomit center, was likely the cause. A prescription of short-term steroids solved the problem temporarily. The plan was that Leah would qualify for a promising trial drug if the tumor grew. In July, there was a small amount of growth that was considered insignificant. Only significant growth would prove that Leah failed chemotherapy, qualifying her for the trial. In the medical world, any patient can fail chemotherapy. In our world, chemotherapy failed our Leah.
In August, steroids were once again necessary, but now for the long term. In November, Leah was diagnosed with Trigeminal Neuralgia and finally qualified for the trial based on clinical progression. As required by the trial, the small amount of tissue remaining from surgery was submitted to Brigham and Women’s Hospital to verify a specific mutation that was identified in the original findings. After an out-of-town trip to a participating hospital, several hours of discussion, and signing consent forms, we were regretfully informed that Leah’s tissue did not test positive for this specific mutation. Now, the tissue is gone, and the only explanation we were offered was the possibility of a heterogeneous tumor. Without verification of the mutation, Leah no longer qualified for this trial. In fact, this once promising drug could result in paradoxical growth.
Three weeks ago, Leah began another regimen of low-dose chemotherapy (Avastin and Irinotecan), every other week for twelve to fifteen months. As we continue our journey, I’ll be posting to update family, friends, and all those praying for Leah’s complete healing. We are so grateful for your continued prayers, love, and support.
Gina, Mitch, Gracie, and Leah