Results Are In

Met with the doctors this afternoon. Basically Dr. Torres said that all my blood work came back normal for me. The radiologist read the CT scan and commented that it was hard to tell if there was a change because this CT I had with contrast, where the last one I did not. So they are hard to compare, however he did say that it appeared that the right kidney might have some decrease in scar tissue. Dr. Luthera felt the same way. Between the two doctors they feel comfortable allowing me to stay on Tomoxiphan for 3-6 months. At that point they are asking Heather and I to make a commitment to going on Cytoxan.

We asked Dr. Luthera about the Bone Marrow transplant idea and he said that the problem was what drug to use to totally kill off the bad cells? It would be a big risk with unsure results.

As Dr. Luthra explained there is so little known about ECD, including treatment, how it progresses etc. He felt we could track the kidneys and other bodily organs with ease because they are easy to CT or MRI. His concern was the long bones of the legs and other areas such as my left wrist and my elbows. Basically the histiocytes cells that are out of control in my body set up shop inside the bones and basically replace the marrow tissue with scar tissue. This means the biggest problem with the condition is killing off my cells. Bones produce cells, red blood cells (o2 carrying cells), white blood cells etc. So if the ECD was to take over the bones I could run the risk of sickness, lack of O2 cells, and such, which is why he is concerned about the bones and doesn't want us to wait too long to go on Cytoxan, as he knows this will help with the ECD in the bones. It's not that there is a major problem there right now, but there is no accurate way to track changes in the bones, so we are gambling in a sense that the condition will not take over the bone marrow.

I explained that we are in a difficult position weighing options. On one hand we want Doug to stay healthy and on the other hand we would like to have a baby. If I go on cytoxan, it will cause sterility and having a baby will not be an option. Again, he did feel comfortable giving us another 3-6 months to try, but he would like us to commit to going on cytoxan, and not wait a year from now.

Tomorrow I am having a MRI of the brain and face. Dr. Torres recommended doing so since I have been having problems breathing out my nose the past 4 weeks. I will meet with him later in the afternoon to review those and return to Colorado late Friday night.

Today we did not get the total results we wanted but it was a good day hearing that things have not progressed and that we do not have to go on Cytoxan, right now anyway. Gosh we are sure excited to have a baby. Please pray that it happens for us soon.

Side note: Please pray for our friends Dan and Kim and their son and daughter. There son Andrew has been in the hospital the last week or so suffering with a condition called ADEM. Please pray that Andrew takes a turn for the better and soon. Pray for peace and supernatural rest.

Best!