Koe

Koe’s diagnosis of HLH started off as a virus.

Multiple trips to his pediatrician yielded no answers and eventually led to a trip to the ER. The ER doctors did not find anything too out of place or concerning, but gave us a referral to the pediatric hematology and oncology department in Reno. The hem/onc team noted concerns immediately and were convinced it was leukemia.

After multiple lumbar punctures and bone marrow biopsies, leukemia was ruled out, and HLH was given as the official diagnosis. The cause, which is still a little muddy, was and is still believed to be EBV.

Rituximab was the first line of defense, which initially seemed to work. A four-day hospital stay, our first time inpatient, seemed very uneventful, and Koe was feeling better.

The following months were nothing short of terrible. Koe ended up not responding to rituximab, chemotherapy, or high-dose steroids. We would spend a couple of weeks a month inpatient at the hospital for debilitating fevers and inflammation that we simply could not get under control.

In the meantime, we reached out to the team at Stanford Children’s Hospital. They suggested no more chemo and a new medication called Jakafi (ruxolitinib).

After starting this medication, we started to see some significant improvement in Koe. He was far from himself but no longer had fevers and was able to enjoy being a kid again.

With no true improvement in his labs, we packed our bags and went to Stanford Children’s Hospital in Palo Alto, CA. While Koe’s immune system and supportive medications finally kicked EBV, it was present in his T and NK cells. His immune system was still at full throttle, and the doctors resorted to the last option they had: a bone marrow transplant.

My wife, Kristina, and I signed the consent forms to give Koe a bone marrow transplant on his 4th birthday. We had no idea how hard the road ahead would be.

On October 8th, 2025, Koe received his bone marrow transplant from a 9/10 unrelated donor.

His recovery was something no one, let alone a 4-year-old, should have to endure. From Day +0 through Day +15, he was diagnosed with TA-TMA, HHV-6 reactivation, CMV reactivation, and rhinovirus.

The conventional medications he was receiving didn’t seem to have any effect on any of the viruses and made his overall condition worse. In the meantime, his engraftment was painfully slow, and every day seemed to drag by.

He eventually received virus-specific T cells from Dad, which within five days proved to be very effective.

Within that first month, Koe showed a resilience that cannot be described with words or told by mouth. True and undeniable grit.

He didn’t eat for 56 days, had 25+ IVs placed over the course of five days, had a PICC line placed without sedation, and received an uncountable number of infusions and transfusions.

After 160 days in the hospital, Koe was finally discharged.

He still has extremely low platelets, less than 20, but you wouldn’t be able to tell. His attitude, stamina, and smile rival that of any other 4-year-old.