Up and Down...

Sam's Monday clinic visit showed that her CBC counts are still holding steady. Her "tummy troubles" have continued but seem to be improving slightly with less cramping and pain it seems. We have a follow up appointment with the GI team on July 14th. If there is not significant improvement on her current antibiotic regimen for the colitis, we will have to see what they recommend for the next step.

The "not great news" from the week were that Sam's EBV titer numbers increased from the week before. Not to a "treatment level" yet but still another anxiety provoking call for us. Due to this, we went down slightly on her cyclosporine (one of her immune-suppressing) drugs to help allow her body to attempt to deal with the EBV. We found a study in Baylor TX that is using T-Cell therapy at day +10 as preventative treatment for EBV, CMV, and adenovirus and having some great results. I contacted the researcher from this study and unfortunately Sam would not be eligible for their work, but she gave me the name of another doc in NYC at Sloan- Kettering in NYC who is also doing T-Cell therapy work. T-cells are one of the many complicated, interconnecting lines of immunity defense. In transplant patients, even with a "normal WBC", t-cells do not start repairing until at least one year post transplant.

Our transplant doc here stressed that Sam is not a "t-cell therapy" candidate yet, but that she would want to find an institution that would use Kaeden's t-cells as opposed to a third parties if we wanted to attempt this route in the future. This would help limit late onset GVHD. So the search continues on this front...

Another issue is Sam's magnesium, phosphorus and a few other chemistries have continued to be low. This was not the case a few weeks back and so the docs definitely think is a two fold reaction to the colitis/gut issues involving decreased absorption capabilities and the fact that cyclosporine in particular causes low magnesium in patients. Typically they provide oral supplementation for this but this often cause diarrhea and obviously this is the LAST thing we want to promote in poor little Sam right now so we have been researching other ways to help improve these mineral balances.

The last "negative" from the week was we had some water damage to our house two days ago after a big storm. We are assessing how to get the damage repaired and avoid any possible mold issues because this can be very dangerous for Sam. Unfortunately having any construction/repair work done with her here is also tricky so if anyone has any great restoration construction company recommendations?:)))

On a more "fun note" Uncle Kurt was in town this past weekend for a big triathlon in Chicago and had a photo shoot with some of the top triathletes in the world. Kaeden got to sit in on the shoot and wore his favorite "super hero" outfit taking some professional shots with both the winners of the male and female elite races from the weekend. He was pretty pleased with himself and we can't wait to see/share these pics:)

Again, overall Sam is still a happy camper most of the time with a goofy sense of humor. We really do hope that these EBV numbers hold steady or decrease over the next few months and soon we will be counting down to her one year post transplant date... It feels like forever right now, but we'll get there!!!