Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Monday, March 02, 2009

Scan Results - And A Lot More

Ok, results are in. We met with doc last Thursday to go over some things. The GREAT news is that at 3 years out there is no sign of the cancer. There still are some weird things showing up but they aren't changing which is good. Most of the other tests showed that things were coming along okay.

We say "most" because there are a couple areas of concern. One is growth. Although Rebekah's bone age testing shows that her bone age/density is progressing as it should (at least in the non-radiation affected areas) she is falling off the bottom of the growth chart. Or in other words she is not getting any taller. There is some concern here about the need for growth and/or some other hormones. The radiation field included her pituitary gland, thyroid gland and some potential others. We know the thyroid is not working right for sure. Without us actually seeing them (but them having seen the test results and talked with the oncologists) the endocrinologist proscribed some growth hormone. We believe there is a need for a further more detailed look at her endocrinology system and are pushing for a full exam by them before we just start on hormones that might only be part of the solution, if even that.

In addition we are having more and more behavior issues. These are likely related to the brain damage from the radiation. We have been trying long and hard to get in to see a highly recommended psychologist and were recently able to do so. Only problem is that they are not, unlike what we were originally told, an "in network" provider for our insurance company. That means that 2x/month visits could cost us close to $300-400/month after insurance pays! We want to move ahead with this doc and will have to pay for the initial exam mostly out of our pocket. We can only pray and hope that this is the right fit and that some options come up from there.

Finally we want to update you a little with family dynamics and sisters being sisters. Even though she is the little sister almost 3 years younger, Sarah is outpacing Rebekah in just about every area. Heck, she is almost as big as Rebekah! Last week as we were getting ready for bed Sarah said to Rebekah "You are stupid..." Daddy instantly pulled Sarah out of the room to have a talk with her. During that conversation she told him that "Rebekah is stupid because she doesn't talk right." It was very difficult for daddy to hear from little Sarah. This was the very first time we have seen any indication from Sarah about anything negative towards Rebekah's condition at all. We had a long talk with Sarah and think she understands how different people are different and that doesn't make them stupid; how it is unacceptable to call anyone stupid; and how Rebekah is this way because of what mommy and daddy had to do to her to keep her alive. It was quite emotional.

Prayers for continued blessings and for God to work His hands through both the endocrinologists as well as the psychiatrists situations.