Wow. I can't believe it's been almost a month since I updated my blog. I've just been too tired. I mean, I am SO TIRED! It's like all of the sleep I've lost for the past (almost) year has finally caught up with me, and I just can't. But I do. Because that's what life is all about. Today was clinic day. We have done a lot since our last trip to clinic. Claire saw the reproductive endocrinologist, and now takes birth control pills for the estrogen. My favorite exchange of that day was when the doctor asked Claire if she was sexually active. Claire looked right at her and said, "I am the opposite of sexually active. No hand holding, no kissing, nothing. I am 100% sexually inactive." We also did extra blood tests and a 24 hour urine collection, which was kept in a tightly sealed and very well labeled container in the refrigerator. The things we have done, haha. Claire has started using my father's old walking stick when she is walking on grass (which had been on long term loan to a group) and it is awesome. She successfully finished her summer classes. I won't miss that hour long drive at 7am. Then clinic today. Her albumin levels are up a little and her kidneys are functioning well, so that may really have been a nutritional deficiency. Dr. H said that they wanted to do blood tests to check for bcr-abl (the Philadelphia chromosomal abnormality that was present in her leukemia cells) and chimerism (if she is still 100% Faith's cells). It's routine, he said. They always check this every three months. Really?!? It's like you just start to relax, then someone slaps you in the face with a wet towel. WAKE UP! We're still working on this! No guarantees, no sitting still. We work a lot on the outside, and that's what people notice the most, but what really matters is what's happening on the inside. As we were leaving Claire mentioned to our nurse practitioner that she has become very sensitive to spicy and salty foods. L said that was interesting, and it could be a sign of GVHD (graft versus host disease). She said that the best scenario would be to get a little mouth GVHD, which would mean that the graft is still active and doing its job but wasn't causing too much damage. So we are hoping that this mouth discomfort is indeed GVHD, and that it will stop there.

I recently heard someone say that using chemo to kill cancer is like swatting a fly with with a sledge hammer. You may kill the fly, but you leave a lot of damage in the wake. Is it worth it? Yes, yes, yes. Because the alternative crosses the unimaginable line. And we have had to walk too close to that line.

Truth telling. Because one of the purposes of this blog is to make people aware. And Claire has given me permission to tell truths. Because the effects of cancer don't always end when the cancer is gone, and because most childhood cancer survivors suffer from long term effects of their treatments for the rest of their lives. It was clinic day yesterday. For the first time since transplant I wasn't racked with anxiety for the few days leading up to her blood draw. And sure enough, her blood counts, at least the ones that we all look at first, were fine. Her platelets had even jumped up. But after a closer look her nurse practitioner L saw some things that weren't so good. Claire's albumin levels are very low. Albumin is a very necessary protein in the blood that is made by the liver. Their are a few possible causes for her low levels. The least likely is a nutritional deficiency, but Claire needs to up her protein intake anyway. A likely cause is extensive scarring in the liver, so Claire will be going back to the liver specialists and possibly having another biopsy. Ouch. There is also the possibility that her kidneys  aren't functioning well, and that she is peeing out any albumin that her body is producing. This whole scenario is why her feet have been swelling, and she needs to tell the docs if she starts coughing or being short of breath, which would indicate fluid in her lungs caused by the low albumin levels. Another side effect she is dealing with is the absence of reproductive hormones. In fact, on a hormonal level, she is about the same as a sixty five year old post menopausal woman. Except at age sixty five your body can accept that, but at age nineteen your body is nowhere near ready for that craziness. This is probably the cause for her nightly near-fevers (hot flashes), thin, dry hair regrowth, dry skin, and fatigue. It is also highly unlikely that she will ever be able to conceive children, but we knew that. Her uterus is ok, though, so she could most likely carry a child with a donated egg. (Maybe that is why the good Lord sent me a house full of daughters.) Anyway, a trip to the reproductive endocrinologist is on the schedule, too. So, on we go. Scheduling appointments in between her classes, trying to get things done before she moves out in the fall (!), praying that things keep moving forward. Oh, and looking into getting hand brakes put on her car. Between that and her handicapped parking sticker I think everyone will want to catch a ride with her. Truth.

Btw, if you would like to watch musical numbers from my benefit concert, especially the one featuring Claire, go to YouTube and search Mary Driggs. We raised over $3000 for Curesearch for Children's Cancer!

       Visiting the new Provo City LDS temple after class.

      Too much food at Doghaus to celebrate the end of school for Faith and Ella.

      Visiting the grandparents on Memorial Day.