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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)
Posted by joyful on February 1, 2024, 2:21 pm
Category: Grace
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
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
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)
Posted by joyful on January 24, 2024, 12:41 pm
Category: Grace
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
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)
Posted by jondaley on January 16, 2024, 11:51 pm
Category: Grace
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
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
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
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
(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)
Posted by joyful on January 8, 2024, 2:33 pm
Category: Grace
I switched to Capital One after being with Citibank for years (decades, actually).  Citibank started a poor security practice of sending you a text message that says "never share this with anyone", and then they ask you to repeat that code over the phone (even after authenticating me with... (More)
Posted by jondaley on January 12, 2022, 11:30 am
Category: Reviews
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)
Posted by jondaley on October 30, 2020, 10:46 am
Category: General, Reviews
Someone just asked for advice on Facebook, and I figured I should save it here so I don't need to type it again when someone asks later.   We've had just about every kind of insulation in our house. So, more than you asked for, but hopefully useful. Also, if you don't know about it,... (More)
Posted by jondaley on October 29, 2020, 10:40 am
Category: General, Reviews
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