On August 4, 2023, just 4 days before kindergarten kick off, our world was flipped upside down. Shawn, our 5 year old son, was diagnosed with B-cell Acute Lymphoblastic Leukemia and is currently undergoing chemotherapy. He is considered high-risk due to the spinal fluid containing leukemia cells.
Backstory - About 2 months before his diagnosis, we started a medication called Guanficine for ADHD. We noticed huge improvements the first two weeks in his speech, focus and overall calmness. Then we started to notice a change- increase in fatigue and wanting to sleep in the middle of the day which can be side effects of that medication. We started to wean off the meds and made an appointment with his pediatrician. In the meantime of waiting for our appointment, we also had a cavity that needed to be filled. We attempted to do that in office but the meds worked opposite for Shawn so he needed to be put to sleep. We went to a local hopsital for this 1 week before his diagnosis. The cavity filling went fine but the morning after, I noticed a few bruises on his knees. I thought maybe when he was waking up from surgery, he hit his knees together. He also had a low low grade fever of 99.8. The hospital told me that can be common and to just continue fluids. Over the next few days, Shawn started to complain of knee pain. I originally thought it was just growing pains. He also said his stomach hurt. When the morning came to see his pediatrician, I noticed 3 new bruises that developed over night on his arm. I told all of this to his pediatrician who ordered blood work and xrays. The xrays showed his liver was enlarged and his blood work was very abnormal. The pediatrician called us immediately and told us to head to Chicago to the childrens hospital.
They diagnosed Shawn with Leukemia while we were still in the emergency room. He needed a blood transfusion as well as a platelet transfusion. Since his white blood cell count was extremely high when we got to the emergency room, he also received tons of fluids to try to flush out the white blood cells. This high rate of fluids caused lots of body swelling and discomfort for him. We stayed at the hospital as an inpatient for 2 weeks receiving multiple blood transfusions and platelet transfusions. We were just released on 8/17/23. He has been having lumbar punctures with chemotherapy twice a week. Once he receives 3 negative lumbar punctures (no leukemia cells in the fluid), he will be able to go down to one time a week. We have already gotten 1 negative but still working on 2 more. He will be having another bone marrow biopsy at the end of the Induction phase which is 9/5/2023.
Shawn's full treatment plan will be around 2-3 years. Please keep us in your thoughts and prayers!
