We are on day 2 of 5 days of steroids for Maggie. Yesterday morning we went in for her monthly chemo infusion, anti-pneumonia infusion, IVIG (antibody infusion), and the start of steroids. Maggie's counts looked very good and Dr. French was happy to see her doing well, minus the diarrhea issue. He also commented on how different it was to see Maggie eating (she was munching away on butter with bits of potato and chocolate milk). We are always excited to see her eating as this once was not the case. And this is partly the reason why Maggie has been able to manage her diarrhea so well.
Her potassium was at 3.8 yesterday-- within the normal range even though she has been dealing with diarrhea for over a week. Maggie's managing it with her food and liquid intake, however, once we got home from the hospital, her diarrhea got out of control. It continued this evening as well, so she has had 3 very bad bouts of it. I just wonder how well her body will actually be able to manage given that she is losing so much liquid.
Dr. French also came in to talk to me yesterday about the possibility of being referred out to another GI specialist in another hospital. This diarrhea issue has been going on for so long and she has 10 more months of treatment, so it is likely that it will continue. I don't believe Dr. French is satisfied with the GI specialist at Dayton and what she decided. Basically, the book has been closed on Maggie's issues from their perspective, but it is hardly finished. After Andy and I discussed options, we have decided to look into a GI doctor at Cincinnati Children's to see if we can find anything else out.
I am to the point where I just assumed we would have to manage her diarrhea, but if there really was something else they could do, it would be very welcomed. To fight cancer is very stressful, but to add chronic diarrhea to the list adds to the stress. We continually wonder if she is hydrated, her potassium is within the correct limits, etc. Not to mention the amount of laundry and clean-up that we must do since diapers were not meant to handle diarrhea. Though I don't want to put Maggie through anymore invasive procedures, if they could find something, we would be so happy. And after talking with a nurse yesterday, what Maggie goes through daily dealing with diarrhea is probably more rough on her than a colonoscopy.
As we go through this rough week of steroids, please pray especially that Maggie's diarrhea will go away, that her body will maintain hydration and potassium, and that the effects of steroid will not be too great (fussiness, whining, sleep, etc.).
Thank you so much for your continued support. We appreciate all the comments and prayers.
3 comments:
Continued thoughts are with you guys. I would agree that I would look into it further. A day or two of tests might save her from 10 more months of diarrhea. Well worth it.
I have not commented in a while, but I always read the blog. I often do not have the right words to say, but please know that I am always thinking about your sweet Maggie and hoping for the best.
Regarding the colonoscopy, I've had more experience than I'd like. And the worst part is definitely the cleansing that precedes it. I.e., what Maggie likely experiences all the time with her diarrhea.
The second worst part is the prick to find a vein for the anesthetic. Which I know is especially difficult for such a little tyke.
But the colonoscopy itself, because of that anesthetic, is painless.
At least that is my experience.
Hasn't she had a colonoscopy or something like it before?
On a happier note, it's so good to read of good test results.
And to report what a wonderful experience Maggie's grandfather's piano recital was! Such an important time for our family. And opportunity for others to learn about childhood leukemia. And be able to help a bit with contributions to Lydia's Hope.
Love and prayers always.
Great Aunt Phyllis
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