Sunday, April 15, 2012 Evan was diagnosed with an upper resp infection, strep throat and tonsillitis. Tuesday, April 17, 2012, the fever was back again. We returned to the doctor; diagnosed with pneumonia. Thursday, April 19, 2012, Evan was walking very strange, as if his legs hurt. I saw some bruising and the fever was back. The doctor gave him a breathing treatment, steroid shot and an antibiotic shot with more antibiotics. The doctor said we needed to return to our pediatrician if Evan still was not feeling well by Monday. She was concerned about the swollen lymph nodes in his neck and the pain in his legs; she said they look for Leukemia or Lymphoma if symptoms persist for a week. Saturday, April 21, 2012, I took him to the ER, due to fever and he could not walk at all. They ran blood work and tests. He was admitted that evening. Sunday, April 22, 2012, our Pediatrician was on call. He believed this was Leukemia and wanted to complete a bone marrow test that day. As we waited for information about the procedure, the Hematologist walked in the room. My father and I sat there as he told us in front of Evan that my child had Leukemia. They would have to start chemotherapy as soon as possible. He suspected it was AML, Acute Myeloid Leukemia. They needed to act quickly to save Evan's life. We were also told that Evan had a VERY RARE FORM OF AML; he has a 3 chromosome trans-location (2, 10, and 11). This has never been documented prior.
Evan started 4 rounds of inpatient chemo for four months. The first month he was in the hospital for 30 days. He was very sick and admitted into PICU. The next 3 months of chemo went very well. Evan did not have many side effects. He was discharged quickly after chemo and did not return to the hospital as most do, mainly due to infection or high fevers. Doctors discussed bone marrow transplant with us. Evan's older brother was tested, but Zach is not a match for Evan. After meeting with CHOA Bone Marrow Transplant Team, Evan does not have a match world wide; cord blood transplant would be the best option. We decided against transplant at that time. On August 5, 2012 at 3 AM, Evan finished his last dose of chemo. Evan had done fantastic throughout chemo treatments. Four rounds of chemo which started on April 26, 2012. A total of 29 days of chemo every 12 hours.
On January 4, 2013, we felt the need to take Evan to the oncologist because he was having eye pain, headaches, strep throat and now a fever and vomiting. They decided to do a spinal tap (rule out relapse in the spine/CNS) and a bone marrow test. His CBC, Spinal test and bone marrow tests were perfect. After sedation from these tests, the oncologist decided to check his testicles. He felt a large mass in his left testicle and ordered an ultrasound. We waited to hear what no parent ever waits to hear again...Evan has relapsed with AML in his testicles. They were showing a large leukemic mass in his left testicle and 2-3 smaller masses in the right. We decided to start isolated radiation after the biopsy which confirmed AML in the testicles. One week after, they completed another bone marrow test and spinal tap with chemo injection to prevent relapse in the spine/CNS. This bone marrow test confirmed AML in the marrow (blood). At this point we decided to relocate to CHOP (Children's Hospital of Philadelphia) immediately. When we arrived, we met with the AML specialist, Dr Aplenc, and spoke about options for relapse. We also mentioned the eye pain that had been concerning me for weeks. Literally, we were on course for chemo and bone marrow transplant ASAP. Dr Aplenc completed a bone marrow test the next day which confirmed it was in his marrow (went from 5% to 30% in one week - meaning that the leukemia was now affecting 30% of his cells). The next day, Evan's eye was in extreme pain and swollen. He was referred to the Ophthalmologist. Next we were told that our son had Leukemia in his right eye and had lost vision in that eye. The next day, Evan was admitted and went through 3 rounds of sedation. First to fit him for a helmet for radiation to his eye, then to place his central line in his chest and complete an MRI of his head, then to start his first session of radiation to his eye. Evan received radiation to his eye everyday for 12 sessions. The Leukemia was all around his muscles in his right eye as well as the optical nerve (caused the loss of sight - stroke of the eye) and 3 spots on the brain. This is the first time any doctor has seen a stroke of the eye due to Leukemia. Evan will continue chemo again, radiation and be prepared for a bone marrow transplant. We pray for remission again and a cancer free life; A CURE!!! He has become an inspiration to so many! We are so proud of him! Love you Love Bug! We still ask that you become a bone marrow donor through "Be The Match". EVAN STILL NEEDS A MATCH! He's a Fighter and will BEAT THIS!!!!