John was diagnosed with ALL on October 21, 2019, and his identical twin brother Dean was diagnosed 37 days later on November 28, 2019.
Both of the boys had been sick for about four months prior to their diagnosis. Each pediatrician visit brought a new answer like a gastronomic bug or hand foot mouth disease, but the week before John was diagnosed we requested that they do blood work. He was sick again and had been sent home from preschool.
By this point he had lost about 10 lbs, was asking to be carried everywhere, was having frequent nosebleeds at night, had bruises all over, and didn’t seem like himself. He had a really bad cough that continued to get worse over the next two days before we brought him into the ER. They found out he was neutropenia and severely anemic and transferred him to UC Davis. He was admitted to the PICU and diagnosed the next day.
He came home 10 days later and over the next few weeks, I slowly started to see similar symptoms in Dean and demanded he have bloodwork done. The same day we took him to get bloodwork we ended up having to bring him into the ER, where they made the same discoveries and transferred him to Davis.
Dean seemed to have a harder time with the treatment initially and spent 20 of the first 28 days of treatment in the hospital. He had started to draw tight concentric circles, which was unusual for him and was complaining of headaches. On Christmas Eve my fiancé thought about an episode of Doctor Who and asked Dean if he drew circles because that’s what he was seeing. His answer led to us bringing him in and them discovering a blood clot in his brain.
Both boys have had surgeries to have PICC lines or ports placed, or both in John’s case, more than 25 combined lumbar punctures and bone marrow biopsies, blood and platelet transfusions, chemo, and Dean gets a shot at home twice a day for blood clots. Some days we’re at the cancer center 2-3 times a week depending on their treatment schedules and labs, and if one of them is in the hospital that means that one of us is there 24/7.
Neither my fiancé or I am able to work due to them needing round-the-clock care so we’ve had to move in with family due to the financial strain. The boys are no longer able to go to preschool and we have to be mindful of visitors and taking them out because we need to keep them healthy.
Throughout all of this, they both constantly look after each other and make sure that the other one is okay.
Hope sesison by Jacki Labelle Photography | Facebook | Instagram