10/21/2026
💙 It's Warrior Wednesday! 💙
Today's Warrior is Xander 🌱
Xander’s story began on February 7, 2026, when I took him to our local hospital because he had a persistent fever. I was able to break the fever, but it kept coming back. They examined him, did a few swabs, told me he had strep, and sent us home with antibiotics.
I followed up with his pediatrician because he wasn't getting better. The pediatrician told me he had tonsillitis, prescribed another antibiotic, and sent us home, telling me to come back the following Monday.
Two days later, I could look into his eyes and knew something was wrong. By this point, he had been running a fever for seven days, reaching well over 103°F. I decided I wasn't waiting until Monday. He needed to go back to the emergency room immediately.
I explained everything to them, and this time, I demanded blood work and for something more to be done. I later regretted not asking for it sooner because, by this point, my son was in a very bad state. His liver and kidneys were barely functioning, and his spleen was three times its normal size.
They sent us straight to the ICU, telling me my son might need dialysis. Within an hour, we knew something was seriously wrong. I had sought help, but nobody truly knew what we were dealing with at that moment.
In the ICU, the doctor came in, ran labs, and did what he could to keep my baby comfortable. About two hours later, he came back with his phone and showed me a picture of a graph. He told me he had never seen anything like it before, but he believed my son had HLH. Xander’s ferritin level was 120,000. He told me right then that the hospital wasn't equipped to treat my son and that we would be transferred immediately. The children's hospital was already on its way to get us.
I sat there in disbelief.
On February 15, 2026, Xander was diagnosed with HLH. They didn't yet know whether it was secondary or genetic. As soon as we arrived at the children's hospital, I had to make the most difficult decision of my life: agreeing to place Xander on a ventilator.
They explained that they needed complete control over his body because it was under extreme stress. Fifteen medical staff members were waiting in the room for his arrival, and everything moved so quickly.
I sat and watched him fight day by day.
We didn't know what was causing his HLH yet, but after four days, a nurse practitioner came in and told me he believed Xander had secondary HLH triggered by the Epstein-Barr virus (EBV). He explained that they had sent off more labs to verify this. To me, it felt like a relief that they had an idea of what they were seeing. His EBV viral load was 930,000 copies when they checked it, confirming what the nurse practitioner suspected.
While on the ventilator, Xander had a PICC line placed. Bone marrow was extracted from both hips, and spinal fluid was collected to test for activity in his spinal cord.
After all of that, I was told Xander would need 10 rounds of chemotherapy over eight weeks, along with steroids to suppress his immune system.
I watched my son go from being a very energetic three-year-old who was hitting all his milestones to barely being able to walk, crawl, or feed himself.
After week four of chemotherapy, we made the decision to cut his hair because it was thinning, patchy, and very itchy for him. To soothe him, we talked him through it and told him it would grow back, which it did.
He thrived for four weeks after chemotherapy was stopped. Then he developed a fever. With a PICC line, a fever means an immediate trip to the hospital, and in his case, it has been that way every time.
During this hospital visit, I was informed that he had appendicitis and would need immediate surgery. Because there was a small infection on the outside of his appendix, his body was put under stress. With EBV, stress can cause the virus to multiply, so the doctors told me his HLH was reactivating.
My biggest fears were coming true all over again. Almost immediately, we were back in the ICU.
But my son's strength and stubbornness never let it get the best of him. He gained 20 pounds and sat like a prince in the hospital while all the staff adored him.
Because his HLH reactivated so quickly, the decision was made to give Xander a new infusion called Rituximab, another immunosuppressive medication.
After four weeks of treatment and a dose of immunoglobulin, I was told that his B cells would be depleted for the next 30 days, leaving the EBV with nowhere to attach itself.
Through this process, we discovered that my son's T cells are damaged and cannot normally fight and kill B cells.
Xander's genetic testing came back around this time. It had taken months to receive the results, but when they finally arrived, I was told he had a genetic mutation in his PI3K pathway and would need a bone marrow transplant.
After everything he had already been through, this news sounded devastating.
The mutation he has affects the on-and-off switch of his immune system, which is not functioning properly. Now, his option for a full, healthy life is a bone marrow transplant.
Xander's last dose of Rituximab was in June 2026, and it was supposed to last him 30 days. As of September 2026, he is still thriving and waiting on the list for a bone marrow transplant donor.
Before February, Xander was a normal, healthy kid who had never been sick a day in his life. Hearing all of this so quickly was a lot to stomach as a parent, when all you want for your child is the best.
If you're in this fight with him and us, know that you're not alone. ❤️
