I apologize for always unloading on you all, but I'm really having a tough time lately and need to get my feelings out with some people who truly "get" it. Leann finished her first DI a little over 2 weeks ago. This was supposed to be a good week for her, since she's off all meds (except for IV vanco every 8 hours, and the occassional Kytril since the vanco makes her nauseous, plus her daily supplements). She started her first week of school last week and was feeling good enough to work with her tutor on her scheduled times Monday, and Wednesday, but was feeling like total crap by Friday so we had to cancel her tutor's hours for Friday.
?
Leann has been dealing with a side effect called Idiopathic Intracranial Hypertension (IIH) since May. Her pressure is checked with LPs and it had been remaining relatively steady but seemed to be trending upwards starting with her LP on Day 29 of DI. Since Friday, she has felt horrible with severe headache, nausea, dizziness, tinnitus, and visual disturbances (floaters and double vision). I called her neuro Saturday and he's pretty confidant her pressure is trending up again, but since it can only be confirmed with an LP, he's waiting till Thursday (when she should start IM 2). She's been feeling so awful that she's not been able to sleep, mainly just laying in bed quiet and withdrawn (when she is the most pain/feels the worst, she basically stops talking). Morphine isn't even really cutting it, so she had to go to the ER last night for fluids and a booster dose of IV Dilaudid. We had to cancel her tutor again today and she just keeps asking me "Why does everything bad happen to me?"
?
I know I should be thankful that my girl is still here with me, fighting and showing leukemia who is boss. I know I should be grateful and feel proud when I look back and see everything she has conquered on this journey, but looking back just makes me feel more depressed and wonder "What's next?"
?
IM *should* be an easy phase for Leann, but it's not. MTX and VCR are quite possibly the worst drugs for her and I know she is going to be miserable. LTM is *only* four months away, but it feels so much longer than that. I hate this.
No comments:
Post a Comment
Note: Only a member of this blog may post a comment.