May 24, 2022 Latest post:
Nov 14, 2022
3-year-old Ezra Blue began vomiting nearly every day, several times a day, in December 2020. He was taken to the doctor numerous times and was ultimately treated for gastrointestinal issues. Mom and Grandma continued to push doctors for more testing as Ezra’s symptoms worsened. By early March 2021, Ezra was now mostly cross-eyed, was vomiting every day, was stumbling, and losing weight. Ezra’s mother, Hannah, told the doctor on a Zoom visit that she thought Ezra had a brain tumor and requested the doctor refer Ezra for an MRI. The doctor refused, stating she did not think insurance would approve the referral. Hannah continued to call the doctor’s office over the next 3 weeks reporting increased symptoms and requesting more tests. On March 31, 2021, Ezra’s grandmother, Deevonna, decided to take Ezra to the local ER. After reading the notes and examining Ezra very briefly, the ER doctor asserted that Ezra needed to have an MRI and would need to go to Doernbecher Children’s Hospital immediately. Once he was at Doernbecher and after a 3-minute MRI, doctors reported that Ezra had a large, egg-shaped tumor resting on his brain stem.April 2, 2021, Ezra underwent surgery to remove the tumor. A biopsy was sent in, and Ezra was officially diagnosed with medulloblastoma, a type of cancerous pediatric brain tumor. After surgery, Ezra was unable to sit up, hold his head up, and was having difficulty with swallowing. Ezra was inpatient for 31 days before being allowed to go home for 5 days to enjoy his family before starting intensive chemotherapy. Ezra began chemotherapy on May 10, 2021. His protocol was 6 cycles and he needed three stem cell transplants during treatment. All chemotherapy treatments for Ezra were inpatient and covid restrictions allowed 2 care providers, total, inside the hospital with Ezra. In September, 2021, only one healthy adult could be in the hospital with Ezra so Deevonna and Hannah took turns staying with him (Hannah doing most of the overnights).Ezra completed 8 months of intense chemotherapy with a total of 153 days inpatient. Ezra has endured multiple blood transfusions during chemotherapy. He completed chemotherapy in December 2021 and the MRI showed “nothing of concern” to the oncologist. In January 2022, Ezra and Hannah stayed in Seattle for 6 weeks so Ezra could get daily radiation treatments as is standard protocol for medulloblastoma. Unfortunately, Ezra’s post-radiation MRI showed that the cancer was back and did not respond to the radiation as we had hoped. We were told there is no cure. The cancer is “sprinkled” over the top layer of his brain, on his spinal cord, and in his cerebral spinal fluid. Doctors said without treatment, Ezra has mere months to live. With further treatment, we may get to keep him a longer. Ezra may also be eligible to participate in an immunotherapy clinical trial in Seattle. As of May 5, 2022, we haven’t heard if he is eligible yet. The oncologist said he would present Ezra’s case to a national tumor board and will let us know.Due to the intensity of treatment, his age, and the serious nature of his condition, Hannah was forced to defer nursing school, which she was halfway through the program when Ezra was diagnosed. Hannah and Ezra financially relied on grants, scholarships, and Hannah’s income, all of them now unavailable as she has also been forced to take unpaid medical leave.