Monday, January 26 2009

Since my last post, Hannah visited the neuro-ophthalmologist with good results. He did a rather brief exam and reviewed her past reports from when she was in Boston (2 years ago), and our most recent visit to the ophthalmologist. Hannah was unable to complete the test he wanted her to do. She placed her chin and forehead on the rests and was supposed to press the button when she saw the flash. It was almost like a big bowl facing her, with a small pinpoint in the middle. But, the assistant couldn't adjust the machine correctly and kept telling Hannah to keep her head still. However, the machine was set way too high and Hannah was sitting up as tall as she could, so she couldn't keep her head forward enough. She finally started crying, you could see it coming. They brought in someone else to adjust the machine who immediately made the necessary adjustments and all was good. However, Hannah couldn't keep her head still enough and again, the assistant was moving her head and telling her what NOT to do. Again, Hannah started crying. I said That's it..she's done, we're done with this test.

So, the doctor said there is nothing wrong with her. He didn't agree that she had abberant regeneration of the nerves. He was a bit old and grouchy and not really the kind of doctor who felt he needed to explain himself other than to say "there's nothing wrong with her, it is the way it is." I guess I should take that and be happy with it, but then what is the explanation for the eye issues? We were told for 2 years that Hannah was constipated, that Hannah had migraines, that Hannah was crazy. And guess what, they were all wrong. Hannah had a brain tumor. For 2 years we went from doctor to doctor, and all the while, Hannah was suffering with a brain tumor. We are feeling a bit frustrated now, like we are in another vicious cycle with all of this. Right now, Hannah is dealing with cognitive issues, emotional and aggression issues, stomach problems, nausea problems, eye problems, balance issues, constipation problems, foot drop and leg pains at night.

Ok, I'm done complaining now. Hannah is here, she is tumor free, she is here. Sometimes it's just touch dealing with all of these issues every single day. But will we take that over cancer...any day.

We have a new plan in place to solve her stomach issues which continue to plague her on a daily basis. She is missing quite a bit of school again because of it. Last week she only went to school 1 1/2 days total. We are trying a new combination of medicines to help with both the chemo induced constipation and the stomach pains (which do not seem to be a result of the constipation and may be the result of acid reflux.) That's the plan for now, so we'll try this out and see how it works for her for the next month. Her oncologist said we will work with this right now and "see what the MRI shows." I almost fainted when I heard that, as if it could possibly show something. It's scheduled for February 10th.


1 comment:

Anonymous said...

Hi Kim,

It sounds like things are quite busy with your family. I know every little sniffle and stuffy nose makes me worry with Josh.

And actually we are dealing with my husband having dizziness, feeling fuzzy in the head (like he is drunk), and fuzzy vision. The doctors are telling him he has an inner ear infection.

It seems like every little ache and pain and problem makes you suspect cancer. I hate living like this. But, after what we have been through, its hard not to think like that.

Thankfully, God has it all under control and we don't have to worry---easier said than done.

I'll keep Hannah and your family in prayer.

Gloria Quaintance
friend from Boston