OUR FAMILY'S JOURNEY
WITH CHILDHOOD CANCER
On August 1st, 2009 we were admitted to Doernbecher Children’s Hospital in Portland, Oregon. After biopsies, several tests, and agonizing days of waiting, Ethan was diagnosed 5 days later with Stage IV Alveolar Rhabdomyosarcoma (aRMS). He had a large tumor wrapped around his heart and it was collapsing his left lung airway. Ethan also had another large tumor in his abdomen that went through his diaphragm pressing against his liver and stomach as well as cancer in his lymph nodes.
Prior to his diagnosis Ethan had no symptoms of being sick. We first knew something was wrong when we noticed a small lump on his chest near his left breast. We would later learn that it was a tumor protruding from his chest. Ethan had complained of some pain so his doctor ordered an ultrasound test. During the test we could tell something was wrong from the look on the technician’s face. That evening we were called by our doctor with the news that Ethan had a large softball sized mass in his chest.
Ethan received 7 toxic chemotherapy treatments as a part of his treatment path. Finally on September 21st, 2010, our son finished his intensive chemotherapy plan. However, we were cautiously optimistic because we knew the statistics for relapse with Stage IV ARMS was high, and knowing that terrified us. Keeping those statistics in mind we fought to have Ethan placed on a maintenance plan to keep the cancer at bay in the hopes it would never return. Since the maintenance plan was not an option at Doernbecher’s, we transitioned our primary treatment to Dr. Wexler in New York. Luckily he agreed to oversee Ethan’s treatment from there and collaborated with our local Pediatric physician back in Oregon.
Ethan was approved for his maintenance plan and started it in November of 2010. Unfortunately he was taken off his plan in January of 2011 because he contracted the BK virus, something that rarely causes disease, but in cancer patients who have suppressed immune systems it can be dangerous. Ethan was urinating blood for several weeks, and he had horrible bladder spasms with constant pain.
Ethan at first received his treatment between Portland, Oregon at Doernbecher Children’s and where we live in Medford, Oregon. Later he would receive 6 weeks of radiation treatment in Manhattan, New York between January and February of 2010. We decided to travel to New York City so that Ethan could be treated by Dr. Leonard Wexler at Memorial Sloan Kettering. Dr. Wexler specialized in the type of cancer Ethan had. We also knew how crucial radiation treatment was to Ethan’s treatment protocol as we elected not to do surgery as there were risks involved and different treatment paths. In February of 2011 Ethan was flown to New York where he spent 3 weeks living at the Ronald McDonald House in New York so he could be treated by Dr. Wexler.
It had taken almost 2 months for his urine to come back completely clear, and on April 1st we finally received the news that there were no BK virus cells in his urine. He also had scans on April 7th that were clear! Ethan was considered to be in a state of NED, or No Evidence of Disease. Now the plan was to get him back on his maintenance plan. Ethan later started to experience some pain in his side and in his legs. We had scans taken in Medford that showed no indication of cancer. We were left to wonder whether it was a side effect of the various treatments Ethan had been receiving or if he had actually relapsed.
Over time the pain was getting worse. We discussed Ethan’s symptoms and scan results with Dr. Wexler and were advised to fly back to New York once again. On June 21st, 2011 we received the most devastating news any parent could receive, Ethan’s cancer had relapsed and it had spread EVERYWHERE. His cancer was now present in the bones of his legs, the pelvic bones, sacrum (the triangular bone at the base of the spine and at the upper and back part of the pelvic cavity between the hip bones), the spine area and in his ribs.
While in New York Ethan started a new chemotherapy treatment just 2 days later that consisted of the drugs Irinotecan and Temodar. After two weeks of treatment, we received more devastating news, the chemo was not working. At this point Dr. Wexler placed Ethan on palliative care and we flew back home to see if there were clinical trial options available at Doernbecher Children’s Hospital in Portland.
Once at Doernbecher, Ethan’s platelet counts continued to drop, making him ineligible for any clinical trials. As his parents, we never gave up, continuing to look for additional options and alternative treatments. While in Portland, Ethan’s health started to decline at a fast rate and on August 8, 2011 our son earned his Angel Wings.