Support for Remi, Stella, & the Yamawaki Family

We are the Yamawaki family. Aaron, Jen, Remington (age 13) and Stella (age 4). Right now both of our children have significant health concerns. Remington has an undiagnosed degenerative process affecting his liver, brain, and cardiovascular system. Since February 2020 we have been working so hard to try to find a full diagnosis and treatment for Remi. In August 2021, after an incidental finding, Stella was diagnosed with a Neuroblastic Tumor. The tumor is located in her chest, growing from the nerves of the spine, resting on the heart and lungs. The tumor has continued to show concerning changes to which surgery and treatment can no longer be avoided. Our family's story: Remington has been experiencing significant health complications from what is currently being referred to as an undiagnosed disease, affecting his liver, brain, and cardiovascular system. This disease is suspected of being lifelong for him and is now advancing. Remi was born with GI complications and some developmental delay and has always needed some degree of medical intervention. Remi has had a major diagnostic work-up with countless labs, imaging, surgeries, and comprehensive genetic testing. His liver enzymes are now always elevated and frequently very high as high as the 900s. After his 3rd liver surgery in 2020, it was clear that there was damage to liver bile ducts, inflammation the Portal Veins and capillaries, and unknown deposits forming in the liver. Within a few months, specialists discovered that this was not primary liver disease but rather a systemic disease affecting multiple organs. Additional imaging showed deposits in his brain, and more recently a deposit in the soft tissue of the wrist. Repeat psychological testing showed concern for cognitive regression. In addition, he has continued to show increasing signs of cardiovascular and autonomic dysfunction symptoms. Remington is cared for by an excellent team of providers in Portland, Seattle, and Central Oregon. In August 2021, Stella swallowed a quarter, and multiple X-rays showed that the quarter remained lodged in her stomach over the course of a week. We were then sent to OHSU in Portland to have it surgically removed. Before the procedure, they did additional imaging. She had apparently passed the quarter in a matter of 24 hours, but the clear image showed a shadow on Stella’s heart. It was quickly determined that this shadow was a mass and Stella was admitted to the oncology unit. We now know that her mass is a Neuroblastic tumor. Biopsy and MIBG scans in September 2021 showed positive signs that the tumor was maturing with cells consistent with Ganglioneuroma. Stella has had imaging for over a year now. The tumor has grown by over 63% in this time which is unfortunately a faster rate of growth then her over all growth. Recent imaging shows multiple changes to the tumor and it can no longer be determined if it is free of cancerous Neuroblastoma cells. Stella is also at risk for equally dangerous autoimmune processes attacking the tumor and ultimately her nervous system. It has recently been determined that we can no longer avoid surgery and treatment. Stella’s care team is both in Portland, Eugene, and Central Oregon. What’s next for us: Right now, our family frequently travels back and forth to the Portland children’s Hospitals for both Remi and Stella’s care. In 2023 Remi’s GI team plans to do more comprehensive imaging and repeat Liver biopsy with the possibility of an additional surgery to placing a temporary Liver Stent. His Neurology team will repeat imaging of the brain and have repeat cognitive testing. Our hope is to have Genomic testing for Remington in our constant search for a diagnosis and treatment. For Stella our immediate need is to find out of state hospital who might specializes in Neuroblastic tumors, Neuroblastoma, and Thoracic Surgery. Stella will need Thoracic Surgery and treatment of some kind. There are still so many unknowns for her. Thank you for your Love, Prayers, and Support. We are so very thankful to you and have great Hope for our kids. “Rejoice in our confident hope. Be patient in trouble, and keep on praying.” ‭‭Romans‬ ‭12:12