Search Results: appointments

Two Boston Visits
On Sunday, we went to the Franklin Park Zoo. This event was hosted by the Jimmy Fund clinic for its patients. It was sobering how many families were there, and it reminded me how many different types of childhood cancer there are. We had a fun time, though . There was a bubble lady, face... (More)
Posted by joyful on September 19, 2025, 2:33 pm
Category: Faith, Grace
Day +571
Well, I didn't manage to post this yesterday when the day was a nice round, even number, so I get to post it today when it's a prime number! This has been a full summer for us. Noah was home. Grace got to ride at Summerfest just like all the other healthy children! She had... (More)
Posted by joyful on September 1, 2025, 6:15 am
Category: Grace
Great results
Wednesday's many tests all went well. The MRI showed shrinkage of the tumor, especially around the ear canal (less so in the cheek/salivary gland.) The hearing test confirmed Grace's attestation that her right ear is significantly improved. Her eyes are still perfect. Her heart is also good, no... (More)
Posted by joyful on July 13, 2025, 6:43 am
Category: Grace
St. Patrick's Raining Taco Day
Today is the day, one year ago, that Grace was allowed to exit the hallway doors of 6 West and live in a place other than a hospital room! They played Raining Tacos for her exit parade, so my thought is to celebrate each year with tacos for dinner. (And maybe a shamrock shake thrown in.)... (More)
Posted by joyful on March 17, 2025, 8:16 am
Category: Grace
Upcoming appointments
Grace has her ear CT scan, and audiology and ENT appointments this Friday, March 14. April 17 is the scheduled date for her next bone marrow aspirate; that will be at Dartmouth this time. Fun quote from yesterday, "You aren't Joy any more. Your middle name is 'Mommy' now." (More)
Posted by joyful on March 12, 2025, 9:09 am
Category: Grace
More Time For Praying
Grace had several appointments at Dartmouth today: audiology, ENT, oncology/nf1, lab draw This is my memory's summary of Jon's report to me: A lot of time for not a lot of progress.  Education/information, but no decisions. The ENT was not experienced, so they want her to see the adult... (More)
Posted by joyful on March 4, 2025, 7:40 pm
Category: Grace
Thanksgiving for Grace
Sorry we left you hanging about Grace's recent appointments. Here are some things to be thankful for about Grace. She did really well during her audiology appointment. It took a long time, but she followed all the directions and was cooperative as usual. She does still have some hearing loss in... (More)
Posted by joyful on November 25, 2024, 6:59 am
Category: Grace
Day +170 Update
We were so relieved and happy to have Jon and Grace with us for Family Camp. Daley summer life has been super full as usual.  Jon got special permission for Grace to ride the Summerfest carousel all by herself (and he wiped the horse down with hospital disinfectant wipes.)... (More)
Posted by joyful on July 26, 2024, 4:30 pm
Category: Grace
Homeward Bound!
We are headed home on Monday!   Grace will still have at least one clinic visit a week and depending on the labs that week, might have a second appointment, but we decided that for the sake of our entire family, we need to be home and it is worth driving back and forth as needed.... (More)
Posted by jondaley on April 6, 2024, 4:17 am
Category: Grace
Discharge?
The doctors started talking about discharge last Friday and that continued on Monday.  They decided to turn off the continuous morphine and moving more of her medicines to her NG tube. I was pretty skeptical that she was going to tolerate only on occasional morphine and I expected her to... (More)
Posted by jondaley on March 13, 2024, 5:30 am
Category: Grace
Appointments today
Please pray for Grace's appointments today. Extensive dental work at 11AM under sedation (fillings and crowns), and sedation means fasting from now until after she wakes up; and then CT scan in the afternoon. We are scheduled to be there all day, so coming home to pizza and hymn singing will be... (More)
Posted by joyful on January 19, 2024, 6:42 am
Category: Grace
Two Days of Appointments
For the most part, these last two days went pretty well.  Grace was a trooper as we navigated the multiple confusing buildings and talked with many providers and was poked and prodded by various specialists. Her audiology appointment went pretty well.  The doctor was impressed with... (More)
Posted by jondaley on January 12, 2024, 3:18 am
Category: Grace
Dinner in Boston
Had sushi after a day of appointments at the Dana Farber Cancer Institute.    We're staying overnight tonight. Had a lot of blood tests today and then a bunch of meetings with various providers to discuss next steps.   Audiology, dentist evaluations and an... (More)
Posted by jondaley on January 10, 2024, 6:20 pm
Category: Grace
Pre-transplant workups
We are heading to Boston tomorrow and Thursday for a myriad of appointments. Faith will also have her donor preparation appointments. I also discovered yesterday that a segment of our friends still had old dates. Because of our Christmas COVID, everything got postponed. So if all goes as... (More)
Posted by joyful on January 9, 2024, 10:07 pm
Category: Grace
Leukemia
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
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