Search Results: away

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
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
The first round of tshirt orders has come in! Local people can come pick up anytime.  Please bring payment when you come if you haven't prepaid.  Noah will be mailing faraway people's shirts soon. I'll update later with how much has been raised for David's House.  We... (More)
Posted by joyful on February 6, 2024, 2:58 pm
Category: Grace
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
Joy has designed a tshirt for Grace's cancer journey. We are selling them as a fundraiser for David's House . They cost us $20 each,  but we're selling them for $10 minimum and any amount you give over $10  will be donated to  David's House , the free housing we... (More)
Posted by joyful on January 25, 2024, 10:34 am
Category: Grace
The only known curative therapy for JMML is a bone marrow transplant, so we will be going down to the Boston Children's Hospital/Dana-Farber Cancer Institute . Their team is one of the leading cancer centers for treating JMML. We had our first visit on December 12, and are still processing... (More)
Posted by joyful on January 8, 2024, 2:38 pm
Category: Grace
The pathology report indicated no parasites, and no bacterial infection, but confirmed the swollen lymph nodes. The doctor said, “I do not like the look of her paleness, and that spleen is really big. We need to see inside; go downstairs and get to imaging right away.” Grace had an... (More)
Posted by joyful on January 8, 2024, 2:37 pm
Category: Grace
6/1 - Nathaniel was playing with the nebulizer, dripped some of the leftover liquid, said, "Uh, oh."  Then he walked to the bathroom, opened the cabinet, got out a hand towel, came back into the bedroom and wiped up his spill. 6/2 - I asked Nathaniel to put the toy cars away and he did... (More)
Posted by joyful on June 17, 2016, 2:47 pm
Category: Jonathan, Noah, Joy, Jeremiah
11/2 - Jeremiah, "Aunt Prudence gave us this one."  perfect grammar 11/3 - Jonathan, "Mom, did you know that if you take the 'c' out of 'record' and add 'er' at the end, it becomes 'reorder'?" 11/3 - Jeremiah, walking backwards with finger in front of his face, "Me try to pick [scab],... (More)
Posted by joyful on February 29, 2016, 8:41 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah, Nathaniel
9/2 - NPD definitely pulling up (on bathtub) - see Mom's post of Maggie P. 9/2 - NPD, "ma-ma-ma" "na-na-na"  JDD is convinced it means "Mom" 9/2 - Joy, "2+3 is 5. [pause] I learned that in bed."  Subsequently also taughtherself other addition facts. 9/2 - Joy making bracelet... (More)
Posted by joyful on February 29, 2016, 8:22 am
Category: Jonathan, Noah, Joy, Jeremiah, Nathaniel
5/6 - Jonathan is as tall as Mom! 5/7 - Faith, "Ramen numerals" 5/8 - Jeremiah, "Don't touch it."  I think that's his first three word phrase. 5/9 - Jeremiah was looking at the New Bible Dictionary that has a painting of the last supper (or something like it - Jesus in the middle... (More)
Posted by joyful on February 29, 2016, 7:57 am
Category: Jonathan, Noah, Faith, Joy, Jeremiah, Nathaniel
From an email written to my mom on April 4, 2015 at 7pm. Just after noon, Noah came screaming in from outside.  He was holding one hand with the other and blood was dripping.  I took him straight to the sink to wash off.  He couldn't tell me what had happened and there was... (More)
Posted by joyful on January 8, 2016, 1:22 pm
Category: Noah
Once again, we were blessed to have Grandma and Dad-o with us for a birth. Jeremiah was still too clingy on Mommy for us to be comfortable having him at the birth.  He did well completely away from me, but had trouble when nearby and I was unavailable.  That is exactly the situation a... (More)
Posted by joyful on January 6, 2016, 1:36 pm
Category: Nathaniel
1/25 - Joy, about ready to dance, "Mommy, if you don't see this show, you won't see it again, EVER!" A good reminder to be present in the moment!  I turned away from the  computer and gave her my attention and I watched her beautiful solo dance show. 1/29 - Reading with Noah... (More)
Posted by joyful on January 6, 2016, 9:32 am
Category: Noah, Joy, Jeremiah
We went sailing today in the Black Rabbit, which is the name of our Flying Junior.  I do need to find out the history of it, because I think I don't have it quite correct.  But Heather's grandpa have it to her when she was a kid and we've sailed it since we were married. It needed a... (More)
Posted by jondaley on August 5, 2015, 8:58 pm
Category: General
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