Well, we made it through our scheduled week. Provided nothing unexpected happens, ( too bad we always have to plan for the unexpected ) we won't have to go back until Tuesday. The week started with Claire having surgery and ended with lots of transplant education. Claire now has a triple lumen broviac. It is a central line with three ends, all of which will be used during transplant to give her nutrition, antibiotics, fluids, medicines, chemo, and the stem cells. It makes bathing, which needs to be done daily to reduce the risk of infection, challenging at best. Because her platelets are on the low side it is taking the incision where her line comes out a while to clot and heal. Our body does things that we never even think about! Claire's dentist was surprised that they prefer her to not floss during this process, but when you have very low platelets, any bleeding is very hard to stop. And if you have no white blood cells, any open tissue is an invitation to bacteria that can eventually find its way into her blood stream. And once bacteria is in her blood stream, things can go very bad very quickly, as we have already experienced.

I think Claire and I were both a little overwhelmed by our radiation consultation and planning meeting at the Huntsman Cancer Institute. She had about 8-10 people around her, measuring and planning how her TBI would go. The amazing thing in situations like that is that they all seem to really know her, call her by name, and act like she is the only patient they need to worry about. As overwhelmed as we might have been, Faith was probably even more overwhelmed by her appointment. Before her blood draw, her blood pressure was pretty high. (After the draw it was quite a bit lower. Stress! ) When she saw the nurse lay out several vials for her blood, she actually started to see spots in front of her eyes. As they were drawing blood she got very cold and clammy and broke out in a sweat on her upper lip. One of our cute nurses came in with some juice and a cold pack and helped her to lay down. She recovered quickly after the blood draw was over, but I think she got a little taste of what Claire goes through all the time. On a weirder note, the child life specialist did tell Faith that if she murdered someone she could totally pin it on Claire because they would have the exact same DNA for a while. Umm, ok. Faith is 14, but ok. Interesting, I guess. But pretty weird. In all of the preparation, I really appreciated that the social worker today said that she usually tells families to prepare for a level of illness that they haven't really experienced. Then she said that probably wasn't applicable to us, because she felt that we have already experienced that level of illness when Claire relapsed and was in the hospital for six weeks. I appreciated that recognition. Earlier the radiation resident was going through possible risks, and he very soberly told us that radiation could potentially cause a secondary cancer in the future. I looked right at him and said that everything we have done so far could cause a secondary cancer, but we were willing to jump off that cliff in the hopes of giving our daughter a future. Sobering, indeed.

On Wednesday night we had an amazing experience. Families from our church congregation met together to join in prayer for Claire and our family. They then fasted until around 11:00am on Thursday, when everyone, joined by friends and family in many other places, prayed for us again. We were so moved by this expression of love and faith. It was truly an example of bearing one another's burdens and comforting those that stand in need of comfort, and we will never forget it.

             Preparing for total body irradiation. No one is ever quite prepared for how tall Claire is! (5'11")

                             Getting measured by the team.

                                       Cranial radiation prep

     Preparing her cranial radiation mask. Claire loves the show Face Off, where make up artists create fantasy type make up with lots of  prosthetics, so that was her visual for this process.

        Seeing our cute friend and old neighbor in the OR recovery room.

             Faith getting vitals as part of her pre transplant work.

                                         Giving blood isn't always easy.