The liver. It is the body's largest gland. It's a vital organ that supports nearly every other organ in the body in some way. Without a healthy liver, a person cannot survive. There has been a lot of discussion about Claire's liver. During her first month of relapse treatment it was damaged. In fact, after she came out of her semi comatose, delirious state in the ICU, she didn't want to look at herself in the mirror because she was so yellow, from her feet right up to the top of her head. Since then, her liver function and bilirubin levels have slowly returned to normal ranges. We were all thrilled that, after her open liver biopsy, the lesions that were showing up on her liver weren't infection or leukemia, but were just scar tissue. But scar tissue is an issue itself. It is called fibrosis, and in the liver it is staged, with stage 4 being cirrhosis. If Claire's liver has too much scar tissue keeping it from doing what it is supposed to do, it won't be able to handle the full radiation (TBI, or total body irradiation) the transplant team hopes to do. They can't risk liver failure. So yesterday we went to the liver clinic. It seems to them that Claire leans closer to stage 2 fibrosis than stage 3, which is good. The doctor told her to avoid alcohol (check), don't misuse acetaminophen or ibuprofen (check), avoid herbal supplements which can also be hard on the liver (check). He said that he is encouraged moving forward. Now our transplant doctor has to make some very hard decisions. We have been frustrated that we keep being delayed. It would have been nice to have Claire home before Christmas. It would be nice if she could start school next fall. But of course, those things don't matter to the transplant team. And they shouldn't. They are making decisions based on trying to save my child's life. Perspective. These were the things we discussed in clinic today.
On Monday Claire will go to the OR (again) to have her new central line placed, and have a bone marrow aspirate and a lumbar puncture to put more chemo into her spinal fluid. On Tuesday we meet with the radiation team for a consultation. Hopefully they will have decided if she is having TBI by then, or just cranial radiation with more chemo. It is important to radiate her head, because the brain is sanctuary for leukemia cells. At her age, the brain is quite protected, so it shouldn't cause any permanent damage. Back in the 50's and 60's, when they were starting to tackle childhood leukemia, the brain was the place where most relapses occurred. (If you haven't read The Emporer of All Maladies, I highly recommend it.) So the brain has to be treated. Then she should start radiation the following week. Claire hasn't had radiation before, so this is really unchartered territory for us. One day at a time.
As all of this is happening, I've been thinking about my other children, especially my two younger daughters. My youngest daughter has struggled with anxiety since Claire's first battle with cancer. She is also quirky, and not always great in social situations, which can make it hard in our neighborhood and at church. (A lot like Claire at that age, actually) This week she was left out and even lied to by the neighborhood clique, and a few other girls complained about her to me. My second youngest daughter (Claire's donor) holds all of her emotions in, hates drawing any attention to herself, and can carry the weight of the world on her shoulders. And, if I'm being honest, Claire has not had much patience with her younger sisters. And I really love all of my children for who they are. But it still just breaks my heart. Being 13 and 14 is hard enough without having cancer in the picture. The truth is that siblings of cancer patients are fighting the battle, too. People, especially young ones, tend to forget that. So, if you are the praying kind, please include my other children in your prayers. Thanks.
I can't figure out how to caption these pictures, but the first one is Claire on Halloween (the last airbender, the series not the movie, haha), our crazy pumpkin display, and Claire learning how to do family history with one of our fabulous neighbors.