November 15th, 2010

It has been almost three weeks since Rebekah went back on treatment. We were hoping by this point she would be back to herself, or heading in that direction.Unfortunately that is not the case. Her headache pain has lowered a bit, but not immensely. She is missing at least one day a week of school, sometimes two. There has been one week she made it through the whole week since she became sick again. She is doing extremely well in school and works hard for her marks which is good, but she feels so unwell. She has her good days,and on those days we are thankful. She still has more good days than bad, but the bad ones are so hard on her. Today I pushed her to go to school even though she was feeling awful,mainly because I know generally on Mondays they assign work for the week and I wanted her to get it. Now I am thinking she should have stayed home as she is much worse tonight. It is so hard as a parent to know what to do, this is the most frustrating part for me. We still don't know if this is a relapse because she went off antibiotics, or if the school needles did it.....not sure we ever will. I am experiencing allot of frustration right now, as well as poor Bekah . This disease is taking so much of her life. It is easy for people to say "she looks good" or "she seems better" because she hides it so well. This is an invisible illness meaning that you don't always look sick, but your body is falling apart inside. We are going to do one more week of IV's at this dose level, and if she still does not improve enough we are going to double the dose again. Last time the doubling the dose is what finally got her better. We are praying Rebekah can have a healthy Christmas this year as the last two were spent very sick.