Stephen’s Fight Against FLT3-mutated AML

On June 1, 2023 our family’s lives changed forever.

My son Stephen had been experiencing facial swelling, which we had attributed to an infection in his wisdom teeth.  We visited the dentist during the last week of May 2023 to schedule their removal, and Stephen was put on antibiotics to address the infection.  Late morning on June 1, 2023, Stephen texted me a photo to show me how much the facial swelling had progressed despite the antibiotics.  I left work and took him to the emergency room, as I was beginning to fear sepsis.

Upon our arrival at the ER, Stephen was taken straight to an exam room.  The nurses took blood and the doctor came to evaluate the situation.  By 2:00 p.m., I had been informed that his bloodwork indicated that he has Leukemia, and the hematologist had already been through to discuss the immediate game plan, which included admittance to the hospital and a bevy of tests starting as soon as the next day.  By the end of the day, I was informed that his white blood count was 99,000 (compared to a normal range of 4,500 to 11,000).

Stephen’s face and neck continued to swell so he underwent a lymph node biopsy, in which they ended up removing one completely, on June 2, 2023.  They started chemotherapy later that evening while we waited on additional test results to determine what type of Leukemia he has and if there are any mutations present.

The morning of June 3, 2023, I met with the oncologist who informed me that we had gotten Stephen to the hospital in just the nick of time. She encouraged me to start getting in touch with family, and stated that although she expects the chemotherapy to be successful, Stephen will likely need a stem cell bone marrow transplant.  She let me know that the chemotherapy would take 3 to 4 weeks – all inpatient – and that Stephen would likely have to be transported to St. Louis for the transplant.  She also suggested that I begin making his end-of-life plans.

Stephen has tolerated chemotherapy quite well so far, despite an initial test result indicating his liver was not happy with the new influx of medication.  His liver levels normalized and they have been able to proceed with the chemotherapy as planned.  Understandably, Stephen has been pretty tired and has needed blood and platelets on more than one occasion.

On June 10, 2023, we were informed that Stephen’s lab work indicated that he has the FTL3 gene mutation as a result of the AML.  The FLT3 mutation is the most common due to AML, which starts in the bone marrow and often moves to the blood.  The FLT3 gene contains instructions for a protein called FLT3, which helps white blood cells grow. A mutation in this gene encourages the growth of too many abnormal white blood cells.  People with the FLT3 mutation have a very aggressive form of leukemia that’s more likely to return after it’s treated, giving them a less promising outlook compared with other types of AML.  The finding of this mutation meant an additional medication, an FLT3 inhibitor, would be added to the chemotherapy regimen. It also means that the stem cell bone marrow transplant is necessary to reduce Stephen’s chances of relapse.

Stephen is currently receiving treatment at University Health Truman Medical Center, where he is receiving amazing care – both as a patient and as a person.  The entire team there has been wonderful to both he and I, and I cannot thank them enough.  Unfortunately, they will not be able to complete the stem cell bone marrow transplant, and Stephen’s insurance will not cover the procedure at another hospital in our area.  He will be traveling to St. Louis at some point to undergo the stem cell bone marrow transplant.  I hope to be able to be with him there during the procedure, and as much as possible during his recovery (which can be anywhere from three to eight weeks).

While we attempt to absorb all of the information being thrown our direction, manage the emotions associated with the diagnosis, treatment, and prognosis, I am also beginning to put thought into his end-of-life planning (as suggested by his medical team).  As a parent, I have yet to experience a feeling of greater helplessness and sorrow than to watch my child undergo these treatments and to plan for his passing.  In addition to the mental and emotional strain, there are financial concerns to every step of the way.  We have a wonderful network of friends who have made themselves known as available, but there are some parts of the journey only Stephen and/or I can travel.

Many of you know my amazing son.  If you are able to help us with any amount we would greatly appreciate it. We have a long road ahead of us and it would be great if we could just concentrate on getting him the care and treatment(s) he needs. If you can't donate then please share this link with anyone who knows us or you think would be in a position to help us.

We are thankful for you and all the positive and healing vibes being sent our way.