Search Results: called

Day +725 update, MRI this week
Well, it's been a couple of months since we posted an update. We're thankful for this break from medical appointments. With the dry weather, Grace's skin has really broken out. It gets dry and itchy, and then she scratches so hard that she makes herself bleed, and gives herself welts. So our... (More)
Posted by joyful on February 2, 2026, 3:36 pm
Category: Grace
Appointment Yesterday
Some pretty good appointments yesterday, and the snow (9 inches?!) wasn't too bad at all driving up to Dartmouth (one car sped by our line of traffic and a couple minutes later was spun off the road in the median, but she was already out of the car and on the phone, so presumably was fine, but... (More)
Posted by jondaley on December 3, 2025, 10:38 am
Category: Grace
Day +500
Today is Day +500 and we have much to rejoice over! We are so thankful for Grace's good marrow results, so thankful to reach this milestone. I feel so much lighter now, and the smaller things that bothered me last week don't seem so bad anymore. Here are some recent pictures and quotes... (More)
Posted by joyful on June 22, 2025, 9:49 pm
Category: Grace
Cast Your Cares On Him
Jon was reading through Grace's test results and saw that the most recent bone marrow report mentioned the JAK3 mutation. He contacted her doctors because we thought that one was gone following the transplant. Dartmouth doctors can't see her Boston results to compare  so they contacted... (More)
Posted by joyful on June 5, 2025, 5:08 am
Category: Grace
Plexiform
We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition to what we already knew, which is that it goes from her external ear where we can see into her middle ear, it also extends down under her ear into her parotid... (More)
Posted by joyful on April 10, 2025, 12:31 pm
Category: Grace
One year home; biopsy results
One year ago today, our older kids got to see a total solar eclipse, and Grace came home! These annual milestones are flying by this year, and we are thankful.  Grace's NF1/oncology doctor called Jon with biopsy results on Friday. It is the opposite of what we were hoping. Both biopsies... (More)
Posted by joyful on April 8, 2025, 4:23 pm
Category: Grace
MRI Scan
As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma , and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there... (More)
Posted by jondaley on February 12, 2025, 5:57 pm
Category: Grace
Birthday surprise
Grace has had a fun birthday overall, with balloons and presents and blowing out the candles. But tonight, during her line flush, the white side busted a hole through, up above the clamp, near the Y . We did our best with a paper clip clamp, but Jon took Grace to the fire station... (More)
Posted by joyful on October 24, 2024, 10:15 pm
Category: Grace
Hospital Update
Grace has been on a clear liquid diet until today where she is getting nothing into her stomach until anesthesia at 5:30.  She will be getting a complete GI scope and a bone marrow biopsy.  Please pray for the anesthesiologist and the surgeons as well as for Grace. Jon called this... (More)
Posted by joyful on June 28, 2024, 8:42 am
Category: Noah, Grace
Investigating GI issues
Today, Boston called to say they'd like to observe Grace over the weekend and to prepare for admission on Friday. They will likely do a colonoscopy and maybe even an endoscopy. (And Dartmouth suggested they get some bone marrow while she's sedated.) She threw up her NG tube this morning and so... (More)
Posted by joyful on June 25, 2024, 6:20 pm
Category: Grace
Day +55
We went back to the clinic in the late morning after Grace threw up her NG tube.  She did manage to take her meds by mouth that morning, but she doesn't really like it.  They had tested her stool when she had so much diarrhea at her appointment the day before and it did come back... (More)
Posted by joyful on April 3, 2024, 8:44 pm
Category: Grace
Home away from home
Grace did well her first night. I had a harder time because it was like having a young baby - changing diapers in the night; she did go on the potty. Jon and the older girls dropped Grace and me off at the clinic on their way home. Grace was not happy to be stuck in a clinic room. First... (More)
Posted by joyful on March 19, 2024, 6:52 pm
Category: Grace
Hospital Time
We've probably said it before, and anyone who has been in a hospital for any length of time knows that any time someone says "soon" that means 2-10 hours, and "tomorrow" means 1-3 days, etc.  So, even though I posted here that it could be Friday, I've been telling myself Monday, though as... (More)
Posted by jondaley on March 15, 2024, 6:34 pm
Category: Grace
Hospital Helper?
Our family will be in Boston next weekend (after the father-daughter retreat at Maranatha) and we are wondering if there is anyone who would be willing to spend some time at the hospital so our whole family (minus Grace) can go out to Boda Borg and the same  sushi buffet  that some... (More)
Posted by jondaley on March 4, 2024, 10:21 pm
Category: Grace
Engraftment, Drainage, and God Answers
The last couple of days have been tough, but today is looking up. At 2:00 this morning, Jon called me to say that her breathing was worse and they were considering bringing her up to the ICU. I called my sister, she prayed for us. 45 minutes later, Jon texted to say that they had increased her... (More)
Posted by joyful on March 1, 2024, 10:50 pm
Category: Grace
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