June 1, 2009

Today we went to see the neurosurgeon, Dr. Pearson. He examined her, showed us her CT and MRI scans and told us what he thinks. Dr. Pearson is 90% sure that Clara Jean has a rare disease call Langerhans Cell Histiocytosis or LCH. LCH is a very rare and very strange disease. It usually starts in the bone and leaves organs alone. It is usually only in one spot, but can be on other spots throughout the body. And it usually doesn't come back, after it is "delt with", but it can. It is similar to an autoimmune disease and is sometimes treated with radiation and/or chemotherapy. Here is the weirdest part. Usually if you "irritate" it, it will go away. For example, sometimes the doc will just biopsy it and it will go away.

So, what does this mean for CJ. Well, they are going to go ahead and remove it on Thursday. If it is in fact LCH, they will order a full body bone scan just to be sure that she doesn't have it anywhere else. If she doesn't, they will do follow up scans over the next couple of years to make sure that it hasn't returned. If they do the bone scan and do find that other places in her body have been infected, she will have to go through some treatments similar to cancer treatments and possibly more surgery.

Now, Dr. Pearson said when he gets a look at it, he will have an even better idea of what it is. He will know if he was wrong and it doesn't look anything like LCH. Or he will know that he may be right and it does look like it. But, we still have to wait for pathology to know for sure. Dr. Pearson said with this case that it may take up to 10 days to get pathology back.

Dr. Pearson showed us on the scan where the tumor is irritating the covering of CJ's brain. He also showed us that there is a lot of inflammation around the sight and he said that he was surprised that it didn't hurt when she chewed. He showed us where the hole is in her skull. Dr. P said that he is going to check the outside of her brain to make sure that it is only irritation. He also told us that the skull may or may not heal itself. I was afraid that it would cause long term problems, but he said that it wasn't an issue.

Tom and I are feeling pretty positive about this. The surgery should only take two hours and CJ should only have to stay one night. They aren't going to shave her head, only cut it a little. Dr. Pearson said that it probably won't be noticable!

Tom was saying last night that he wished he knew how many people are praying for Clara and our family. It is so overwhelming to know that quite possibly tens of thousands of people. I think that we are on prayer lists at churches all over Middle TN. We are on prayer lists at churches in at least 6 states! We have received emails and even gift from people that we don't even know! We are praising God and thanking God all the time for keeping CJ close to Him and for putting people in our lives that care so much! Thank you. Thank you. Thank you.