August 2010

We returned from a NIH visit last week. Karly has new issues we're treating. Kelsey is off the antibiotic she was on last month, mostly to see if the new pains she's having are deeper seated issues. As usual, the disease progresses and the doctors battle to maintain some sort of stability. We still don't have a match. We were suppose to meet with our transplant doctor, but he had an accident which prevented this meeting. The protocol has been approved, and we are ready to move forward with the transplant. The hope is still to have that one good match, not cord blood, however, at this point, it is all we have. The NIH held their own drive for the girls last week. They were able to get another 100 donors. One of the biggest challenges with the double cord blood transplant is the neutropenic period. Neutropenia is an abnormally low level of neutrophils in the blood. It's a serious disorder because it makes the body vulnerable to bacterial and fungal infections. Our doctor feels fairly confident that although Karly would be neutropenic for a longer period of time with the cord blood, she responded well to the treatment during her cancer neutropenic times. This leads the team to believe this is how she would respond during the transplant neutropenic times. Kelsey is another story. We won't go there right now. We go back in 10 days and hope to have more news about our timeline.

In the meantime, I have been fast and furious with painting and organizing the house. Karly has made the shift back into her loft. I gave her room a fresh coat of paint with a new look and a fresh start. We moved Tyler into his new housing for the school year. He moved into a professor's house that rents to students. He has his own bedroom, shares a living space, kitchen, bathroom, and laundry room. Karly and Konner have started their volleyball season. Karly had her first scrimmage in Huntington tonight. We have not moved out of summer mode just yet. We went to the World Pulse Festival in South Bend, the Indiana State Fair, and Trent's scholarship reception at Wabash College in the last 3 days. Soccer season has started, however, Trent has not started. He had arthroscopic surgery on his knee last week. The consensus(Doc and MRI) was he had torn cartilage, but a membrane needed smoothed out. The good news is that recovery should be shorter, and he could still have a soccer season. Karly, Konner, and Kassidy had dance auditions and were pleased with the results. Does it even sound like we have issues? We are trying to keep moving forward and acting as normal as we can. My mind wanders to this and that, but pulls back into the present, living daily while giving it all to Christ. We still are receiving blessings from others during this trying time. It goes a long way to know people are praying for and caring for us. Thanks for your encouragement!
Love,
Mom