Our visit to see Dr. Whitlock

Today we went to see Dr. Whitlock at Vandy Children's. And let me tell you...what a guy. Tom and I both felt so blessed to have this man right down the road. He is a leading expert in LCH and so kind and humble. We were extremely impressed by his knowledge and kindness.

We learned a lot today about the next steps in the treatment process. Bear with me, there is a lot of info and I want to share it all. Please feel free to post questions, if you have them.

One of the things that sent sort of sent me reeling was that the x-ray series that CJ had that showed no lesions, isn't really the best test for this type of lesion and so she has to have an honest to goodness bone scan. She also has to have a CT of her lungs and abdomen. I have been thinking two things to be true, that are/could be false. The first one being that her bones are clear. Her bones may be clear, but we have to have the "real" bone scan to be sure. The second thing that I was walking around believing to be true is that LCH attacks either your bones or your organs, but not both. Now, at this point I am thinking that I must have made that up!! I have no idea why I thought that, but it just isn't true. So the CT scan will show us if CJ has any lesions on her lungs or on another organ in her abdomen. (If she did have one in her abdomen it would more than likely be on her liver.)

I know that you know what a CT scan is. Let me tell you about the bone scan. I believe it to be nuclear medicine. I had one several years ago when Dr. Mangrum first discovered the damage to the joints in my hips. They injected me with a radioactive material and then scanned my body with a big camera attached to a swinging arm. It wasn't very much fun, but wasn't that big of a deal either.

The other thing that I wasn't expecting today was the scheduling of a water deprivation test. I think I have mentioned that some people who have LCH also get a rare form of diabetes. We all think of diabetes as having something to do with blood sugar and insulin, but that isn't always the case. Diabetes simply means "any of several disorders characterized by increased urine production". In this case the type of diabetes we are talking about is called diabetes insipidus and it has nothing to do with blood sugar, it is all about the way the body regulates fluid. With DI the hormone that the brain releases to regulate fluid, isn't released correctly or at all. When you start to become dehydrated, your body releases a hormone telling your kidneys to "shut off the tap". This way your body hangs on to the extra fluid to protect your organs. For people that have DI, the "tap" doesn't "shut off" when it should. You know when you get the flu and you don't go to the bathroom very much?? That is because your body is storing fluid. A person with DI may continue to go to the bathroom, even though they need the fluid and can become deathly dehydrated, very quickly. Some patients that have LCH also develop DI. Usually chemo keeps it away. Here is the kicker, Dr. Whitlock thinks that CJ may already have DI. That is why he scheduled the water deprivation test, it will tell us if she does.

OK, it isn't the end of the world if she does. Yes, it is a lifelong disease, but it can be treated and treated effectively. Right?? Well, this is what Tom keeps telling me. To be honest, I am not feeling that positive about it. It was devastating news for me. A lifelong disease, on top of the LCH...I just haven't been able to put that in it's place yet.

Monday the 6th, CJ will have the bone scan and the CT scan. Monday the 13th, she will have the water deprivation test and Monday the 20th we go back to Dr. Whitlock to find out when we start chemo. Yes, the chemo is a go. There is no question at this point. The only question that is left concerning the chemo is how high her dose will be. That will be determined by the results of the scans. At this point it looks like 6 months of chemo, once a week for 6 weeks and every 2 or 3 weeks after that. Dr. Whitlock tells us that it will be such a low dose that her side effects will be minimal to none. She may lose a little hair and may be a little tired. He said that probably she would go to school for half the day, come in have her chemo, go home to take a nap and be fine the next day. Amazing.

That is all for now. Over the next few days I am going to post some sweet pictures and stories about some incredible kindness and love that we have encountered throughout this process, so please check back.