On Friday, May 13 - Yes, Friday the 13th - we went back into St. John's for the upper endoscopy. First thing, the registration lady knew us, so we flew right through that part. Then we walked back into the treatment area and headed to our room and saw that we had the same nurse we had for the last lumbar puncture and one day when inpatient last week. Too funny. And she is the nurse whose cousins live in my old house that I grew up in on Milentz. They are the people who bought it from us in 1986 and they still live there. Small world. So it was nice chatting with her again and made things very comfortable for Megan.
Megan didn't like that she forgot to use her Emla numbing cream for the IV and they didn't have time to let her put it on since it takes 30 minutes to work. So she crabbed and fussed about it, but she was ok. They took her back just 20 minutes late and before I could even hardly do anything, the doctor was back with pictures of her esophagus and stomach. Her esophagus looked great and the tissue of the stomach looked great, but her stomach was lined with her food from last night's dinner. Food should be out of our stomach after just 4 hours and hers wasn't. So the doctor said Megan's stomach has stopped contracting sending her food on through her system, which sometimes happens when kids are having chemo or taking a lot of meds. She suggested Megan try taking eurythromyocin for two weeks, 20 minutes before each meal, 4 times a day. If this medicine doesn't work, then she will treat it like an irritable bowel syndrome. They also did a biopsy while they were in there, which is standard.
So Megan started taking the medicine on Friday night, but as of Monday, her stomach pain and nausea weren't any better and she's even puked a couple of times. So I called the doctor on Monday and heard back on Tuesday. She said that she can't do anything else until the biopsy results are back. She said to take Mylanta up to 6 times a day, 20 minutes before each time she eats. So, I guess we'll see what happens.
The nurse practitioner from MD Anderson called Monday. They got her results from her thyroid blood tests that they did on Friday while she had in an IV getting the endoscopy done. Her one level was good but her other level was just a tad too high, so they are having her taking an extra 1/2 a pill a week. The medicine helps kill off the cancer and helps it from reoccurring, so they want the numbers to be exactly where they want them. We also talked about her next visit. I'd like to go down there the second week of August, not Oct. 3 as we are currently scheduled. (A MD Anderson daily schedule just came in the mail with our appointment times all ready for us.) The endocrinologist had said end of summer or 6 months, so I thought I'd ask. I just hate to get more into school again and really upset her 8th grade year, especially if she has to have surgery while she's down there to remove another tumor that's on the left side of her neck. The nurse practitioner said that would probably be fine since they like to see patients 3 to 6 months post surgery and 6 months would be the end of July. He's on vacation this week and she's on vacation next week, so it will be a few weeks before she gets back to me, but she said that it seemed likely to be ok.
I called the neurologist today to see when he would like her to have the third lumbar puncture done. His office called back and said they are arranging it with the oncologist to do it again. So we wait for another phone call with a date and time. Until then, at least the head pain only happens when she lifts anything too heavy, but her stomach pain is fairly constant, but worse at some times than others. She is trying not taking the flexerel for the muscle pains, which the diomox (pill for pseudo tumor) gives her. We'll see if we need a refill. Still taking Vitamin D once a week. Now she has a cold that I gave her, so she's taking cold medicine too. Stuffy nose is no fun. I've been fairly miserable for over a week. I think we're both ready to feel better soon.
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