Our little guy Bentley Daehn, was diagnosed with Alveolar Rhabdomyosarcoma at just 9 months old in July of 2014. He is now 4 and still fighting.
Bentley's cancer originated in his face in his sinus cavity under his left eye. A week after being diagnosed he had surgery to remove the tumor followed by 12 weeks of chemotherapy. After completing treatment we traveled to Boston to Mass General Hospital for 6 weeks of Proton Beam Radiation. Upon completion of treatment Bentley had weekly chemo treatments through June of 2015.
In July of 2015 during his scans a spot was found in his lung, a month later the tumor had grown. Bentley started up chemotherapy again just days after his little sister Chloe was born. This treatment was very harsh. He received treatment most weeks with a few off to build his immunity back up before continuing. His time off didnt last too long as most times he ended up in the hospital for blood transfusions or platelets. He continued treatment until July,28th 2016 and was found NED (no evedince of disease) the next day! Bentley was officially in remission! 3 months later scan results showed he was still NED!
In January 2017, upon his 6 month follow up, a tumor was found in Bentley's face and chest. He began chemotherapy treatments that were administered at home. On May 9th, 2017 we foind out that the tumor in his chest had grown significantly almost into a donut shape around the SVC(Superior Vena Cava) vessel which is connected to the heart. That is why his face had been so puffy. The tumor was causing low blood flow throughout his face and chest. After Bentley completed 5 radiation treatments on his chest they found that the tumor in his face had grown which led to 17 radiation treatments near the roof of his mouth. After Bentley's next set of scans we found out both tumors had shrunk over 60%. Bentley was put on a few oral chemo' s that he recieved daily at home. We were devastated with our little guy's most recent scans. Previous scans showed the tumor was in his face and chest. This set of scans showed the tumor was now in both lungs in multiple spots, in his lower back near his spine and in his ribcage. Bentley started radiation in November on his face and back. We traveled to Akron twice a day for treatments for a total of 30 treatments on his face and had 5 on his back, which he finished on December 1, 2017.
Hope for a Clinical Trial
Bentley was accepted in a clinical trial in Boston at the Dana Farber Cancer Institute. He was to report to Boston on January 3, 2018. In preparation for the trial we went to Akron Children's Hospital to get a new port put in on December 22, 2017. They did some imaging and found that the tumor wrapped around the SVC had grown. They also discovered a tumor in the main chamber of his heart as well as more in his lungs. They said that the tumors were spreading rapidly thoughout his body. Due to their findings, he is no loner elgible for the clinical trial. We spent Christmas in the hospital and arrangements were made for hospice.
In the Comfort of His Home
Bentley was brought home on December 28, 2017, so that he can be comfortable and surrounded by loved ones. He is currently on pain medication and steroids as well as oxygen when needed.
Please keep our little guy in your thoughts and prayers!
Thank you for your continued support.
Allison and Richard
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