Around Thanksgiving break, Anna started to get headaches. She also started to experience double vision and random vomiting. At first we thought she had the flu, or maybe it was her heart. Then the balance issues showed up, and the headaches got worse and worse and the vomiting started to happen more often even though she wasn't nauseous. I finally took her to see the nurse practitioner at our general practitioner's office. She referred us to a neurologist, who took a look in Anna's eyes and said her optic nerve was very compressed due to increased intracranial pressure. He ordered an MRI, but due to some crossed wires or miscommunication the MRI was never completed. Finally the neurologist told us to just go to the ER and ask for a CT scan and spinal tap (lumbar puncture) to relieve the pressure since the spinal cord and brain are connected. On the morning of Thursday, February 6th I took Anna to St. Nicholas Hospital ER. They ordered the CT scan and saw an abnormality. The ER doctor sent the images down to neurology at Froedtert Hospital in Milwaukee. The neurologist said put that girl in an ambulance and get her down here ASAP. Anna was transported immediately to the Neuro Intensive Care Unit (NICU), where they assessed her further. They ordered an MRI and more tests, where the abnormality was discovered to be a tumor that was blocking the 4th ventricle in her brain. Ventricles produce the cerebral spinal fluid (CSF) that cushions the brain and spinal cord. The 4th ventricle drains the CSF from the brain, but since hers was blocked by the tumor, it could not drain properly which led to the increased intracranial pressure and caused the headaches, vision issues and vomiting. The doctors were amazed at how well she looked even with a 1.5" x 1.5" mass in her brain! They placed an external drain through her skull to provide immediate relief of the pressure. Surgery on Monday. February 10th removed as much of the tumor as possible.
Rylie was diagnosed with infant leukemia at the age of 2 months. After the first round of chemotherapy didn’t work, and since infant leukemia is an aggressive cancer, we were told that if she got to the point of being cancer free, Rylie would need a bone marrow transplant. She spent the first year of her life in the hospital receiving chemotherapy and other treatments to eliminate the leukemia. In May 2020, no cancer was able to be found, so Rylie received a bone marrow transplant in the hopes that the new immune system will be able to prevent the leukemia from returning. After a couple of complications that lengthened her transplant stay, Rylie is hoping to be discharged from the hospital in August. She will need months of follow up appointments and direct care while her immune system continues to rebuild itself and get stronger.
We are extremely grateful that Rylie and our family has been chosen as Gift of Life recipients. This has not been an easy year for us, and the care that Rylie needs continues to result in missed work. Despite all that she has been through, Rylie is a happy, giggly, and energetic girl whose smile spreads joy and laughter. We are so thankful for each and every day we get to spend with her and see her smile. Thank you for sponsoring us in the 2020 Gift of Life and supporting our family on this journey.