My son, Erick, was diagnosed with acute lymphoblastic leukemia (ALL) on Friday, November 3, 2023, at the age of four years old.
Our story begins on Monday, October 16, 2023, when we recall the symptoms began, which on their own weren’t alarming, but were all together suspicious. Erick had not been his usual active self. He asked to be carried more than usual, had a couple of 24-hour fevers, had one bloody nose, and seemed to experience a couple of night terror/sleepwalking episodes. He would tell us he was cold, and while out on a walk with my mother, he mentioned his leg hurt. We thought maybe he was coming down with a viral infection, so we monitored him closely. For me, the symptoms could be explained. It was mid to late October, and the weather was cooling down, so maybe that’s why he was feeling cold. We realized we needed to take him in when family members, who don’t see Erick on a regular basis, stated that he looked extremely pale. It was a symptom that those of us who see him on a regular basis didn’t notice. We took him to urgent care on October 29, 2023, and asked for bloodwork. I'm extremely grateful the doctor agreed to the lab work without any resistance. Two days later, on Halloween, the urgent care facility called and said Erick needed to be rushed to the ER. Erick was taken to our local pediatric ER, and the doctors mentioned the possibility of leukemia to prepare us for its potential diagnosis. Erick was then transported to the nearest children’s hospital via ambulance. Two weeks. Two weeks of subtle symptoms that I thought were due to a viral infection. Erick was admitted to the children's hospital, and the first days of his initial inpatient stay were a blur. Erick received three blood transfusions on November 1 to increase his counts enough to have a bone marrow biopsy. He had the bone marrow biopsy on November 2, and on November 3, we received his diagnosis. Leukemia. It was the worst day of my life.
Erick started treatment right away. He had a port placed on day one and was an inpatient for 15 days. During those 15 days, we learned the subtype, B-cell acute lymphoblastic leukemia, the lesser of two evils and highly chemosensitive. He completed the standard induction phase and handled it well. At day 29 of treatment, which is the end of the induction phase, his minimal residual disease detection was 0%. Complete remission. Erick was also downgraded from standard risk to low risk, following the results of his karyotyping and FISH examinations. Erick’s doctors told us it’s a category that only 5% of patients fit into. Erick's next phase of treatment was a four-and-a-half-month consolidation phase, which included six four-day hospital stays for 24-hour chemo infusions.
It has been a very long 28 months of medication, appointments, and restrictions. Life has literally felt like a prison sentence. We stopped visiting crowded public places, followed a strict neutropenic diet, and limited Erick’s exposure to direct sunlight. Erick has missed out on a lot for the last 28 months, but that’s all about to change. Erick is now in his seventh and final cycle of maintenance. We are less than two months away from the completion of treatment, and we are happy to report that Erick has handled and responded to his treatment well. Erick is healthy, happy, and thriving! We are eagerly awaiting the end of treatment and the start of summer! We have some living to catch up on!
Candace
Family member and caregiver
