Luke was diagnosed with B-ALL January 17,2020, just as the pandemic was beginning in the US and the world was shutting down. After Thanksgiving in 2019, I noticed his lymph nodes on either side of his neck were swollen.. We went to the pediatrician Dec 10, 2019, and he prescribed an antibiotic and said to come back in 30 days. Luke actually lost 4 pounds over the Christmas break and had been tired and weak. His lymph nodes were still swollen when he went back for his follow-up Jan 10, 2020, so the doctor ordered an xray and blood work. The nurse called me the next day and said his platelets were low, and that we needed to take him to Egleston CHOA where he received his diagnosis Jan 17, 2020.
Luke had been a soccer player(goalie), as well as active in the Civil Air Patrol and did a lot of physical activity. He would complain of his knees/legs hurting, which we had dismissed as “growing pains” and he suffered occasional headaches, sometimes making him nauseated.
Luke is an only child and spent the first year and 1/2 isolated… not only from friends, church, sports, and school, but also even family. He has had to endure many hardships, including a severe, rare, liver reaction to the chemo. He has lost his hair twice, been in a wheelchair so weak from pain and constant nausea, administered his own chemo shots beginning at 13years of age, numerous blood transfusions… just to name a few of his battles. He attempted to go back in person Fall 2021, but developed 2 sicknesses and had to go back to total isolation, and finished up the 10th grade taking classes from home virtually. He has experienced more bad days than good ones on treatment; this long treatment is taking a toll on his mind and body and he struggles to keep up with schooling. Thankfully, Luke completed chemo treatments and had his port removed in June 2022.
So Luke is glad no more chemos, but still has to take Bactrim on weekends until Dec, which makes him sensitive to sun and makes him feel rotten. Doctor said it is supposed to keep him from getting a fatal pneumonia while his body “levels out” the next 6-12 months to get back to normal. His immune system is still weak, but he’s starting to work out and wants to get fit and healthy. He is also experiencing some skin issues with burning splotches on his face and arms(flushing out toxins from being on treatment). He will still go to CHOA each month for a year for his bloodwork and physical so the doctors can monitor