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Today is Day +365. One year ago, this is where we were: Today, Faith is recovered enough to participate in On Belay's Teen Winter Outdoor Adventure (pictures may come later, since she is there as I type.) Grace had her first post-chemo haircut (just bangs) the other day.... (More)

Posted by joyful on February 8, 2025, 9:56 am
Category: Faith, Grace

Possible neurofibroma

From all outward appearances, Grace has been doing very well. She's eating well and gaining weight. All her blood numbers look good. She only has one more week of her last medicine. However, I noticed a dark spot in her right ear and wondered if it could be connected to her hearing... (More)

Posted by joyful on January 31, 2025, 3:13 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

Better, but always an adventure

Grace woke up Friday morning wanting to eat and drink, and she has kept everything down. There is a cold running around our house, which I thought she was getting last night, but she seems ok this morning. However, she did wake up with her nose tube pulled out again. So we are trying out the day... (More)

Posted by joyful on October 20, 2024, 10:48 am
Category: Grace

Sickness

Please pray for Grace as she has some sort of sickness. Last night, she threw up a lot. She is resting now. She has not had a fever. (Two of the other kids have regular ol' colds.) (More)

Posted by joyful on October 18, 2024, 8:14 am
Category: Grace

Day +235

I had to go calculate the day since we no longer count the days like that any more - it has been great to have less medical stuff going on these days, and we get more comments about her being "so cute" in the grocery stores and the soccer games, etc. Her hair is growing in, and I don't think... (More)

Posted by jondaley on September 30, 2024, 10:15 am
Category: Grace

Day +144: GVHD

Heather is better at writing the updates than I am, though I've been intending to write a few since we've been back in the hospital. She has been doing quite well the last few days and much more cheery. Nothing like a colonoscopy to cheer you up I guess. I hadn't been paying... (More)

Posted by jondaley on July 1, 2024, 10:21 pm
Category: Grace

Fever and Admission

When Jon and Grace got back from Dartmouth, Jon asked me to take her temperature. He could feel that she was hot, but the thermometer they used at Dartmouth did not register a fever (it was the kind that you hold a centimeter away from the forehead.) My initial armpit reading was... (More)

Posted by joyful on June 26, 2024, 8:55 am
Category: 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

Belly Hurts, Updated

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... (More)

Posted by joyful on June 21, 2024, 11:22 am
Category: Grace

Blue Shirt Picture #9

Today is the due date! On Saturday, I had Noah take my traditional Blue Shirt picture. I'm ready to meet this baby! My hips are sore from all the pressure. I have to rest a lot, but not stay in one position for very long. I did sleep well last night, for which I... (More)

Posted by joyful on May 27, 2024, 6:33 am
Category: Pregnancy

Even a Cold is a Big Deal

I've been meaning to write an update; I've even gotten started on one (labelled day +90: it's now day +97.) Overall, things have been going well, Grace's numbers coming back satisfactorily. But then she got a cold. Just runny nose and sneezing. But after her nap, she had a mild... (More)

Posted by joyful on May 15, 2024, 8:55 pm
Category: Grace

Day +75, No News is Good News

As they say, no news is good news. Not much exciting has been going on lately. Grace is eating a fairly regular diet at meals, which has always been pretty small. Yesterday, she drank a lot, which hasn't been common for her, so we give her 600ml of water via her NG tube, 50ml... (More)

Posted by jondaley on April 23, 2024, 6:40 pm
Category: Pregnancy, 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

Apartment Life

We are settling into our second week of being full-time in the apartment. Our schedule consists of: Adminstering meds 3 times a day and then washing all of the syringes and straws and flushes Keeping her central line clean twice a day ( Boston Children's says cleaning twice a day is... (More)

Posted by jondaley on March 26, 2024, 9:13 pm
Category: Grace