Amanda had a difficult treatment day yesterday. It started with not being scheduled at clinic despite being told we had the first appointment of the day. Her appointment seemed to go to a worthy recipient and instead we had to hang out for a few hours without her being able to eat or drink before her lumbar puncture. Since we have yet perfected a treatment regiment to prevent her massive headaches following the procedure I agreed to try a different anti-nausea medication. Long story short, it was a big mistake. We traded in the massive headache for vomiting every 12 minutes for several hours. I know that misery well and felt so bad for her. She didn't complain or cry, just puked and became increasingly lethargic. "This isn't the usual reaction" was the comment made by the doctor. I'm getting tired of hearing those words. And of all the days for home health to be four hours later than usual with her hydration pack. Once drugged (IV benadryl may become our best friend), she slipped into a very restless sleep and soaked up the fluids like a sponge. She has five more of these procedures left (so long as she doesn't relapse). I want so badly to find a way to prevent it's nasty side-effects, but am afraid that we'll perfect it too late or not at all. Sometimes with cancer you just have to painfully accept what's out of your control. On the bright side, today she is quietly playing, with no headache, and acting like it never happened.
On a lighter note, I need to put a plug in for Amanda's cousin, Benjamin. He was just highlighted on the make-a-wish web site for Feb 1st. He's been a great inspiration for us to hang in there!
www.makeawishfoundationofutah.blogspot.com
Speaking of make-a-wish, many have asked if we plan to have her participate in the program. We all eagerly look forward to it for her, but after a week like this one we are reminded why we have chosen to hold off a while longer.
One last comment; thanks for the water drinking ideas. I met with her teacher about it. I think we have a pretty good plan in place that we'll try along with suggestions to try different water bottles.
Mar, I'm sorry to hear about Amanda's bad day. I'm glad she seems to be doing better today. My suggestion for drinking more would be to get a watch with an alarm (or some other kind of alarm) that will beep every so often. In conjunction with a good water bottle maybe she'll drink more. Let me know if you need anything.
ReplyDeleteSorry to hear Amanda had a rough day. She seemed happy in clinic early when we saw her. That dang chemo. Kristen has had a bit of trouble with nausea also. It would be good to get to the bottom of it. It was good to see you and Amanda in clinic. I'm sitting here crying after reading the make a wish story. That will be exciting when Amanda is feeling better and able to make her wish. She deserves the moon.
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