Today is day +133. (Jon updated this post)

Grace has been having belly pain and a lot of mucus in her stool, often with blood as well.  We took her off cow's milk again (she had been asking for it instead of almond milk.)  We haven't seen much improvement in the last week, and she does complain that her belly hurts and she also has a diaper rash. There is the possibility that this is GVHD (graft vs. host disease) and for the moment we have stopped weaning her cyclosporine.  We are waiting for her Dartmouth team to communicate with her Boston team to see what to do.

Please pray for complete gut healing, normal stools, and normal appetite. And wisdom and peace.

Update in the evening: Her magnesium levels continue to be good, so she is going down another milliileter starting today, and this is the last step until she is done.  We restarted her Zofran today because she has vomitted some and hard to tell what the cause is.  She hasn't been interested in eating that much, but is eating a piece of pizza right now.  She has been asking for a lot of cuddling and has been sleeping with Jon on the couch when he works late nights and they have been enjoying that time together.  We had a good phone call with one of the Dartmouth doctors today and he heard our concerns and allayed some of them, and is asking some more questions to Boston.  He is happy the bleeding in the stool is lower than before stopping dairy, and while getting mucus in the diaper isn't all that uncommon, did agree that if it continues we will need to do something (probably a colonoscopy).

While the Boston doctors said the bone marrow aspirate was reassuring, they did want to do another bone marrow test on July 10th, in response to the results from this one - something about large platelets and investigating that.  Her hemoglobin and other blood tests have been rising on their own, which hasn't happened since the transplant, I think, without a transfusion, so that is good news.

Posted by Heather Daley on June 21, 2024, 11:22 am | Read 93 times
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Praying! Love to you Daleys!

Posted by Jen Newhouse on June 21, 2024, 9:36 pm

Lifting prayers for Grace and the doctors who care for her.

Posted by Nancy Shee on June 21, 2024, 9:40 pm

Continued prayers for all of you and sending much love as you also welcome your new tiny one!

Posted by Sharon Gamble on June 22, 2024, 7:44 am


Posted by Denise on June 23, 2024, 2:14 pm

Praying for improved gut issues and appetite for Grace. Prayers continue for all of you and managing and adjusting to the addition of Hope to your amazing family.

Posted by Chris S on June 25, 2024, 2:33 pm
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