Christians journey with HLH as told by his mom.
"Christian, 2 years old when diagnosed with EBV HLH in December 2018. He was treated in Edinburg, TX at DHR Children's Hospital and also at Texas Children's Hospital in Houston, TX.
Christian, loved the movie Coco so whenever and wherever he was playing his guitar, performing either for his nurses, on the hospital bed or on our coffee table, the world was his stage and everyone loved watching him.
Our journey began November 2018 but diagnosed December 2018. At just 2 years old Christian was diagnosed with a rare blood disorder known as Hemophagocytic Lymphohistiocytosis (HLH for short) it was triggered by a virus known as Epstein Barr kind of like Mono (kissing disease) unfortunately Christians virus was reproducing in his TCells which are the defenses we carry in our blood making his own body attack itself and his organs mainly his spleen and liver. We were told Christian needed a Bone Marrow Transplant to cure him, we felt like we asked all the right questions but the fear remained. On May 30, 2019 Christian had his transplant, he went through his engraftment phase, shocked physicians with his appetite and his energy levels.. July 2nd 2019 baby boy was discharged and we went to stay to nearby hotel room, it was a great day! He was so excited. No machines! No one walking in.. No longer on isolation... It didn't last very long.. On July 7th Christian's belly distended overnight, breathing became abnormal, I rushed him to the ER and turned out he had a resistant UTI and CDIFF.. We had to stay, my boy was saddened by the fact that we had to go back, I was too. A few days into our inpatient stay he began to have bloody stools out of nowhere, a colonoscopy was done to see if he was experiencing Graft Versus Host Disease which is when the donor's cells aren't accepting the recipients body.. They took a biopsy of his intestines and he began to bleed on a daily basis, platelets and blood transfusions were a regular thing for us.. Until a bruise like spot showed up behind his ear so they did a biopsy on that, it was a fungal infection (my boy couldn't catch a break) then his lymph nodes protruded behind his other ear and 2 under his right armpit, they did a biopsy on them but by then I had already been talked to about how worried they were about him and the possibilities of what could happen.. I read about what the outcome could be from his biopsy after a bone marrow transplant and it wasn't good.. A patient is too immunocompromised to undergo any aggressive chemo or radiation without compromising their quality of life. My husband and I made very difficult decisions that no parent should ever have to make but one thing I said to my husband was, "I couldn't control the beginning but I can control the end" I refused putting my son through anymore pain just to come out of that hospital without him either way, if it was the end for him then we wanted to lay, hold him, if he was able to talk we wanted him to be able to and that's what we did. Our sons last requests was soup and milk (his favorite things). I write this with such a heavy heart bc I hate reliving it but to be honest even just waking up not having him here is reliving it.. Thank you for reading about our son, I pray it brings awareness and it helps you to appreciate your loved ones a little more bc tomorrow is not promised. We thought we had forever to go, God loaned us 3 years. Until we meet again Mi Amor.."
