Day +74 EBV = Murky Waters

        Last Friday our transplant doc called with the rest of the information she got from the lab regarding Sam's biopsies. The CMV and adenovirus stains came back negative but the stain for EBV was positive. She said though after consulting with the GI docs, they feel it is possibly a "false positive." The explanation is this: Sam has had a low level of EBV in her blood titers since engraftment. They monitor this weekly. There is blood in tissue and they feel the tests sensitivity possibly picked up on the EBV in her blood and that it is not actually "disease infected" tissue. They do feel that the tissue is infected but as of now are treating her with "infectious colitis - cause unknown."

       EBV is one of the "scariest" post transplant complications. While 90% of people have EBV in their "blood streams" their immune systems can keep it at bay. Sam's immune system is still suppressed and thus EBV in post transplant patients leads to lymphoma (cancer of WBC) and can rapidly spread throughout the body and be fatal. Unfortunately there are cases of people who develop PTLD (Post transplant Lymphoproliferative Disorder) with very low levels of EBV in their blood stream and those who have higher levels who never develop PTLD and they just really aren't sure why. ATG (a specific chemo that Sam had for pre-transplant conditioning) is one factor associated with PTLD. PTLD is very difficult to treat but the options include surgery to remove infected/organ tissue if isolated, Rituxumab (chemo), radiation, and donor t- cell therapy (can't be done at Lurie's currently so would need to travel to a hospital that has this capability). None of these are things we want to even think about, let alone face. Even hearing anything related to a possibility of this situation with a "hopefully false positive" sent us into a mental tailspin this weekend. Emotionally, it really knocked us out for a few days and just takes us back to a place of such raw vulnerability staring at a sweet 21 month old who just deserves a break.

      Today at clinic, I shared these thoughts with our doc. Overall Sam's numbers looked good including her liver numbers which were high last week. Her EBV titers are "hanging around" 7,000- 8,000. If these numbers rise significantly or Sam starts to show any additional clinical symptoms including fever, night sweats, swollen lymph nodes etc. she will have several CT scans done again looking for lymphoma/tumors. From there we will have to decide based on what we see what comes next. The doc pressed upon me that she knows it is difficult, "but our worry isn't going to make this better or worse." The treatments for EBV/PTLD are dangerous and comes with a host of risks/side effects so this treatment will only be done if absolutely needed. She said that "this may need to take place in the future, but the time is not now, so we need to just breathe and go one step at a time." We do really like this doc and she has gotten to know our family and all of our different personalities very well over the last few months. We know she cares about Sam a great deal. It's so tough to essentially "ignore the possible awful elephant in the room" as I look at her, but I know for all our sake, it's time to go back to one step at a time. Day to day. Live in the moment and just enjoy her because she is honestly such a hoot! I wish she had less restrictions and could share her ridiculous personality and sense of humor with more of the world.... Someday... Someday!!!