Jackson
Diagnosis (Primary/Secondary): Primary HLH
Age & Date of Diagnosis: 10 weeks old January 4, 2011
Location of Treatment: Children’s Medical Center Dallas, TX
Child’s Interests: Anything airplanes & aviation, video games, following famous YouTubers, 3D printing projects
Jackson is 11 years post-transplant received a non related cord blood transplant.
Jackson was diagnosed at 10 weeks old with Hemophagocytic Lymphohistiocytosis, HLH. He started to develop a high fever that wouldn’t go away shortly after receiving his 8 weeks vaccines. The fever persisted for about 10 days. During this time, he was seen by the doctors at The Center for Cancer and Blood Disorders at Children's Health and was admitted a couple of times over those few days. Each time his bloodwork came back worse than the previous time. On New Year’s Eve 2010, we took him to the ER at Children’s and this time his liver and spleen were enlarged. He was a very sick baby and was admitted directly to the PICU. They suspected that this might be his diagnosis but hated to jump to conclusion. Jackson was diagnosed on January 5th and began with chemo immediately after the diagnosis. We were very fortunate that it didn't have time to spread to his spine or brain. Jackson was admitted for his Stem Cell Transplant on April 5th, 2011. He received his life saving transplant using cord blood on April 15th, 2011. Currently, he is doing fabulous. His donor cells are now at 100%. Jackson is almost 11 years post-transplant and is in the 5th grade.
Jackson is seen two times per year by his transplant team. One time by his oncologist and the 2nd visit by his immunologist. Each time blood tests are run and sent to Seattle or Cincinnati depending on which tests are ordered. Jackson also has asthma, so he sees the pulmonologist 4 times per year. He follows up with a dermatologist yearly at Children’s as well.
Jackson is currently in 5th grade in person school. Last year because of COVID he did virtual school at home, which was not his favorite thing to do. He was very happy to be back in person this year.
Jackson loves to ride his hover-board, skateboard and scooter outside. He one day hopes to learn how to scuba dive in the ocean. Right now, he just practices with equipment in our pool in the backyard. During the warmer months he spends lots of time in our pool.
Jackson’s own words---"He thinks it’s cool that he survived and definitely scary to think about. It has really molded my life and the way I think. There are definitely disadvantages to it, but I have learned to live with them. I think it’s weird how my HLH was passed through genetics."
