Something to keep our hopes up...

Oliver is finally well enough to tolerate full doses of chemo. He started with just 1/4 doses and worked his way up as his liver could tolerate it. The last two chemo infusions have been at full dose and when we checked his HLH labs he was responding beautifully! I'm going to back up and review a couple things-there are two types of HLH, one is infectious-the other is genetic. Infectious HLH is cured with chemo treatment, genetic HLH is cured with a bone marrow transplant. Both are fatal 100% of the time if not treated promptly. Fortunately for us they are both treated with the same drug and Oliver's doctors started treating him before they were even sure of his diagnosis...when he was just weeks old! Anyway, when a baby is born with HLH it is almost always genetic, so we have been running genetic tests since the day he was born trying desperately to find a gene that would explain his disease. To this day we have been unable to identify one. When the latest HLH tests came back we discovered that Oliver's IL-2 receptors have almost returned to normal, and his ferritin levels (which have always been too high to chart-over 10,000) are under 5,000! Still a long way from normal, which is less than 200, but a HUGE improvement. But the most promising test result is that his NK cells (an important part of his immune system) went from non-existant to having some that didn't do their job and now??? He has them AND they are working properly! The reason this is such great news is that it is unlikely that we would see such remarkable changes if genetics were the reason for Oliver's HLH...so here we sit hoping and praying that Oliver responds so well to the chemo that we can avoid transplant!!! Yet another reason to keep smiling!