In November of 2019, we noticed multiple patches of spots on Ben’s skin; on his belly, the back of his wrists, behind his ears. He also seemed to be bruising easily, but we weren’t sure because he was 18 months old and very active. I made an appointment with his primary care office to have them look at the spots and check his blood counts. About an hour after that appointment I had a message on my phone from the doctor to call him back. When I called back, he told me that Ben’s platelet count was dangerously low and to take him to the emergency room at Masonic. Once there, they rechecked his blood counts and ran some other tests. A couple of hours later, we were speaking to the hematology/oncology team and were told that they thought he had leukemia. Ben had a bone marrow biopsy within the next few days that confirmed the diagnosis and indicated what kind of leukemia- AML:. The treatment for AML involved 6 rounds of chemo that resulted in wiping out his white blood cells.
Ben had to be inpatient for the chemo treatments (which ranged from 4-7 days) and then while his white count dropped and recovered. Through the 6 rounds of treatment, Ben was inpatient 36, 37, 26, 27, 28, and 29 days. The staff was very kind and attentive. Dr. Turcotte and one of the fellows stopped in Ben’s room for extended periods of time over the first few days following Ben’s diagnosis to go over treatment plans and make sure all of our questions were answered. Ben received music therapy, speech therapy. occupational therapy, and physical therapy throughout his stays. The last three rounds of his treatment were during COVID, which changed visitor policies (siblings were no longer able to visit, one parent in the room at a time) and our ability to leave the room when his counts were high enough (we couldn’t). The nurses and other staff did everything they could to make a challenging time a little less so.