Search Results: prayers

Pain and Poop
The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)
Posted by joyful on February 28, 2024, 7:52 am
Category: Grace
Day +12
Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for... (More)
Posted by jondaley on February 20, 2024, 7:52 pm
Category: Grace
Good moments, Bad moments
Jon wrote today: When I said it was a "bad day" the other day, a nurse corrected me and said "good moments and bad moments". This morning was good and she played in the playroom for quite a while. She did throw up after eating. But has continued to ask for food, and hasn't... (More)
Posted by joyful on February 18, 2024, 8:40 pm
Category: Grace
Tough days
Grace has been in pain and sleeping a lot. These are the hardest days when her counts are low before Faith's cells take hold. I've been home and that's been good. It's hard to be away from Grace when she's suffering, but I know she's in good hands with Daddy. And it's been good to be with the... (More)
Posted by joyful on February 16, 2024, 1:46 pm
Category: Grace
Wanting to eat but not keeping it down
Days +2 and +3 have been full of desire for eating but not the ability to keep it down. Also, bare bottom and oxygen blowing has been keeping the diaper rash from getting worse, and it might even be a bit better.  She has lots of diarrhea.  She has been sleeping a lot. She had a... (More)
Posted by joyful on February 11, 2024, 2:23 pm
Category: Grace
Day 0 - My Blood For Yours
My place beside you, My blood for yours, Till the Green Ember rises, Or the end of the world! One of our favorite series is The Green Ember, by S. D. Smith . Rabbits with swords, new stories with old soul, heroes and villains, joy and grief, hope and longing, with love and... (More)
Posted by joyful on February 8, 2024, 8:13 pm
Category: Grace
Day 0 - Harvest
Faith's surgery is scheduled for 7:30 this morning.  We don't know how long it will take for the lab to process her marrow and then get it to Grace yet. Here are some pictures from yesterday. (More)
Posted by joyful on February 8, 2024, 4:25 am
Category: Grace
Catchup the last few days
The last long update ended February 3 in the evening. In the wee hours of February 4 (Sunday) she got a blood transfusion for her hemoglobin level, which was expected. (They’re killing off her bone marrow, so her own body is not making as much blood.) Sunday morning, she got a dressing... (More)
Posted by joyful on February 7, 2024, 7:51 am
Category: Grace
Some Freedom, Some Nausea
The last post left you with Jon and Grace down in ultrasound. That procedure took two hours. They took hundreds of pictures - exploring all her internal organs. She does have vessel constriction in her liver, wgich is not unexpected with JMML. So since then, she has gotten another prophylactic... (More)
Posted by joyful on February 3, 2024, 5:44 pm
Category: Grace
Admission Day and Chemo Begins
Based on the number of supportive messages we got yesterday, I know you are all eagerly awaiting an update. We arrived at the Dana Farber Jimmy Fund Clinic for lab draws and "here's what's happening" meetings. We sucessfully ordered Grace some food, and then we had to pop across the street... (More)
Posted by joyful on January 31, 2024, 6:43 am
Category: Grace
A Snow Day From God
Today is our last day all together as a family for a while. God blessed it by sending a beautiful six inches of snow that cancelled our outside activities for the day. We plan on spending it cuddling and playing games (and packing for Boston.) Prayers for this week: Praises: We got a... (More)
Posted by joyful on January 29, 2024, 10:09 am
Category: Grace
Her smile is still cute
Jon and I both went with Grace up to Dartmouth today.  The dentist met with us pre-op and said after looking at the x-rays, she thought her front teeth looked really bad and she expected to have to take out the four upper front teeth.  This just seemed horrible to us, but I signed the... (More)
Posted by joyful on January 19, 2024, 8:51 pm
Category: Grace
Next Steps: Boston Children's Hospital / Dana Farber Cancer Institute
Due to getting COVID, Grace's transplant date has been re-scheduled and we are currently scheduled to start the prepatory chemo (much stronger than the previous chemo she has received) on January 30th and then the bone marrow transplant a week later. We expect to be in the hospital for at... (More)
Posted by joyful on January 8, 2024, 2:51 pm
Category: Grace
Giant List of Pocket Notes
I'm very much behind on the blog.  But I have kept the pocket notes safely typed up in my email.  So here goes. In June, the kids and I made a trip to Florida to visit my parents, and my sister and her kids visited, too. 6/14 - Joy, "Mommy! I saw a dinosaur!"  (It was a... (More)
Posted by joyful on December 22, 2014, 2:04 pm
Category: General, Jonathan, Pregnancy, Noah, Faith, Joy, Jeremiah
Pocket Notes
2/15 - JPD walked up to me and hugged my knees.  He now does this often. 2/19 - JDD quotes from The Incredibles, with an Indian flair: "This is your automated captain speaking. Would you like more samosas?" 2/24 - JDD "What's the difference between lo mein and chow mein, and why isn't... (More)
Posted by joyful on March 23, 2014, 5:44 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah
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