Help us celebrate Karsen being in remission from Stage 4 High Risk Neuroblastoma by spreading Brave Gowns to other children being treated at Rady Children's Hospital. On June 2, 2019, my husband and I took our 4-year-old son Karsen into Urgent Care after complaining of a tummy ache for 4 days. It wasn't a bad tummy ache, he just complained here and there that his tummy hurt. Upon our arrival to Urgent Care, X-Rays were taken. The doctor stated he thought Karsen had an enlarged spleen and that we should take him to the ER for further testing. When we arrived at the ER, we were sent to Ultrasound. During the scan, the tech stopped and called the ordering physician and requested they add the lower abdomen and kidneys to the order. I immediately knew something was wrong...I thought maybe he has a kidney infection, maybe its kidney stones. After returning to our ER bay, we were met with the most horrifying news a parent could receive. Our baby had a very large tumor on his left adrenal gland, completely encompassing the renal artery. His left kidney was enlarged and compromised by the tumor. The tumor was so large it was lifting his aorta up off of his spine. He was sent for a CT scan of his chest to see if the disease had spread out of his abdominal region, which it had. Karsen had a large tumor sized lymph node in the chest area that was pressing against his airways. The doctors were apprehensive to sedate him due to the compromised breathing. His blood pressure was elevated, and his hemoglobin levels were low placing him in need of a blood transfusion. Biopsies were performed and it was confirmed that the cancer had spread into Karsen's bone marrow making his bone marrow more than 90% cancer cells. Additional scanning confirmed the cancer had spread and metastasized to his skeletal body with cancer on his skull, skull base, left scapula, lower thoracic and lumbar spine, the pelvis, both femurs placing him at risk for pathological fractures, his left sacroiliac joint, the supraclavicular region, mediastinum, retroperitoneum and left foot. Karsen had extensive disease throughout the skeleton and soft tissues of his little body. We were immediately placed in patient. We started chemotherapy after getting the full pathology and histology of his diagnosis, Stage 4 High Risk Neuroblastoma with MYCN-Amplification, a truly unfavorable diagnosis. 23 days inpatient. We were absolutely living a parent worst nightmare. How did our rambunctious sweet 4-year-old boy go from running and playing hard to a boy riddled with cancer from head to toe. I was scared to even touch him in fear that I would hurt him. My husband and I immediately began searching out the best hospitals in the nation that treated his type of cancer. We found Memorial Sloan Kettering Cancer Center in New York City, and by July 1st, we had transferred all of Karsen's care to NYC. Karsen underwent 5 cycles of high dose chemotherapy, a 13+ hour surgery where they removed the tumor in his abdomen, multiple lymph nodes, all findings of dead cancer tissue under his chest wall, and a lymph node in his neck. Due to the involvement with his left kidney, Karsen also lost his left kidney during the surgery. He then endured 14 sessions of radiation to his abdomen and spine, followed by 6 months of immunotherapy with high dose Accutane. Karsen reached full remission with no evidence of any disease in his body on October 22, 2019. Karsen is currently on a 2-year clinical trial that he will complete on July 20th of 2022. He remains in full remission from all disease and is a happy, thriving, brilliant, loving, silly, fun 7-year-old boy today! We thank God every day for the gift of his life, for his resilience, strength, courage and bravery! Thank you! About Brave Gowns: Do you love the concept? Do you want to sponsor a gown for a family that can't afford a Brave Gown? We never want families to have to incur the cost while going through treatment. Together we can provide these children with sense of normalcy and a boost of bravery on their journey! They will be so grateful for us to send them a gown from YOU WHEN ORDERING THESE GOWNS, CHECKOUT WILL ASK FOR YOUR ADDRESS, BUT THEY WILL SHIP DIRECTLY TO A CHILD, NOT TO YOU PERSONALLY!
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