Posted on Facebook Group: HLH Family (Survivors & Angels)

Posted by: Kelly Claudine Marsh

HLH Family (Survivors & Angels) Shared with Public

I am posting this as a general statement, because I am sick to my stomach hearing what doctors are doing in hospitals that don’t have enough experience with HLH. First, when searching for the hospital for transplant, ask the right questions. . . How many HLH cases have you treated? What is your success rate? What are your isolation and precaution standards (gowns, gloves, masks, reverse isolation…)? What factors do you use to you consider the transplant successful? What is the preparative regimen you use? Is it different for marrow, stem cells, or cord blood transplants? How often is engraftement checked (should be weekly until about 6 months post transplant at minimum, then switched to monthly checks). There are so many more. Get informed, don’t believe everything your doctor says. Do your research, ask questions, talk to other families. HLH is a whole different beast and the BMT process is very unique, as well as the treatment afterwards. People are giving misleading information from their doctors because they deal mainly with cancer patients and treat them like any other BMT patient. This is not the case with HLH!!! Holding engraftment numbers in the 90s is absolutely incredible, so are the 70s and 80s. When engraftement numbers start trending downwards steadily and reach the 20s or 30s, that’s when a DLI is considered! HLH CAN be kept at bay with numbers that low. We’ve seen it time and time again from patients that are holding in the 20s with no return of HLH. In a doctor says that anything below 100% donor cells is a failure in an HLH patient is a complete and total idiot, with OBVIOUSLY no experience with HLH. If this happens, get your child to another hospital with lots of HLH experience IMMEDIATELY! When you give DLIs to a patient with high engraftment numbers, the next thing to occur will be graft versus host disease (GVHD) and it will come down with a vengance. Also, DLIs should be given and then wait a period of a month at minimum to wait for engraftment changes. It can take a while for cells to make their way and mature enough to be seen on tests.