When Faith signed up for the donation, she was told to expect one or maybe two days of significant pain, and then a week of pain that should be managed with Tylenol and then no running and jumping for six weeks, even if she felt like it.

She had 3-4 days of significant pain, and has certainly gotten better since the first week, but at more than 4 months, continues to have 2 out of 10 pain 24 hours a day.  And more pain if she exerts herself too hard.

Grace's doctors referred Faith to her primary care, who took some x-rays and referred her to physical therapy.  The x-rays didn't show any fractures.  The physical therapist didn't really know what to do, in that she didn't know anything about bone marrow donation, but asked a bunch of good questions and gave her some exercises to do daily.  She is supposed to go back to her primary care if she is still in pain in a month or two.  We did find on Google that 4% of donors are still in pain at 9 months and 1% are in pain at 12 months, but the cancer doctors said that Faith shouldn't be in that class of donors, since she is so young.  We do wonder if the "hard time" the doctors had when collecting the bone marrow would result in this extra pain, but we don't know.

Faith wants to play soccer in the fall, but if the pain continues, will not be able to.  She would appreciate your prayers as she tries to rest, but also work on getting her body ready for soccer.

Posted by Jon Daley on June 21, 2024, 8:37 pm | Read 38 times | Comments (1)
Category Faith: [first] [previous]

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 75 times | Comments (3)
Category Grace: [first] [previous]

Jon and Grace are heading to Boston on Wednesday for her post-day-100 bone marrow aspirate. Prayers appreciated!

Posted by Heather Daley on June 3, 2024, 6:18 pm | Read 537 times | Comments (5)
Category Grace: [first] [previous] [newest]

May 31, 6:50pm

9 pounds, 11 ounces

22"

All is well, praise the Lord of Hosts!

 

‭Romans 15:13 KJV‬
Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.

 


Posted by Heather Daley on June 2, 2024, 9:06 am | Read 144 times | Comments (7)
Category Pregnancy: [first] [previous] Hope:
Go to page:
culpable-adaptable