Daley Ponderings

T-minus seven days and counting. Transplant Day is Day 0 and they count all other days from that. Yesterday, I left off while Grace was still sleeping. She woke up slightly grumpy, but soon was fully awake and her normal self. Chemo every six hours, blood draws every half hour (!) plus... (More)

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)

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)

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)

Monday, Grace had pre-transplant bone marrow aspiration and bone biopsy. That's kind of boring. The interesting surgery came right after that procedure. Fertility preservation is something I had vaguely heard of. I know it's rather personal, but so is all this health information. We won't be... (More)

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)

Warning: I'm feeling better now, but the following post pretty accurately how I felt for most of today. After a good appointment in Hillsboro, they still wanted us to go to a pediatric dentist who was familiar with chemo/transplant issues, so Heather headed up to Dartmouth this morning in the... (More)

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)

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)

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)

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)

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)

(this was written January 2024, referring to Grace's first two years of life) When Grace was about six weeks old, right at the beginning of December 2021 , I noticed that she had “ café au lait spots .” I looked it up on the internet, and discovered that these... (More)

Since I'm on a roll of typing out the insulation we've used, I figured I might as well post about our heating systems too. We have five different heating sources for our home, and someday we'll get a sixth... 1a. Oil burner base board radiators. I grew up with base board radiators and I... (More)

In honor of the end of World War I one hundred years ago today, I post a picture of Joy hugging the tree that was planted in memory of her great-great-granduncle Harry Faulk. See my mom's Armistice Day post for a few more details of my family's involvment in the war. (More)