On July 13th, Zoey was your typical happy, playful, energetic 3 year old. The next day brought fever and lethargy, as well as a sore on her lower lip. Her father and I took her to a pediatric urgent care (also her primary care at the time) and they tested for strep (negative) and said canker sore with likely hand, foot, mouth though she had no rash symptoms. We were directed to rotate Motrin and Tylenol every 3 hours and keep her hydrated. We did that, but she slept and the size of the lip increased. On Monday the lip was larger, now bleeding, fever still present. I had an appointment near Baltimore Washington Medical Center so after my appointment we went to the ED there for a second opinion. It was not a long visit, 30-40 minutes. We were told she looked well hydrated, answered the questions about being pale and her brushing, but was told not a canker sore but a cold sore and possible hand, foot, mouth and to keep rotating Motrin and Tylenol. She can home and slept for 7-8 hours, waking to take medicine and sips of liquids.
Prior to her bed time dose, 3 hours after Tylenol, her fever spiked to 105.3. We rushed her to St. Agnes ED where they realized in triage it was much more serious than hand, foot, mouth and wasn’t a cold sore. Her lip had grown even larger. Without even being in a room the doctor put in lab orders, which had not been previously done. Over the next couple hours they did more lab work and waited for results. Doctor came in to say he was waiting on a few consult calls but it was either a severe neutropenia infection or leukemia just as his phone rang. He took the call and came back to say it was doctors at Hopkins and we were being immediately transported and she needed immediate platelets. So at 1:30 a.m. we were transported and further tests run and platelets given. This would become the new norm for a few days along with blood transfusions.
It was confirmed that morning that it was pre-b cell acute lymphoblastic leukemia and we would begin treatment. Zoey tested positive for MRSA. It had entered her bloodstream through the lip incision and her body was unable to fight it off. She was sent to PICU for 24 hours then spent the next 16 days on the oncology floor while beginning treatment. We’ve had one overnight stay for blood clots. She has finished two rounds and is going into interim maintenance. She is a little warrior. Through the process she stopped walking for 3 weeks and is slowly learning again how to walk again. She is laughing and playing, but was unable to start school this year.
Please find attached a pre-diagnosis photo (4th of July wings) and one while during treatment.
Thank you for your time and consideration.
Jenn Smith (Mother to Zoey)