Daley Ponderings

Grace is not feeling so great today. I approved for them to give her another anti-nausea med in the hope that she will feel like eating. She has mostly only nibbled so far today, though she did eat a reasonable amount of eggs. She is painting right now, but definitely not her cheerful self. (More)

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)

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)

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)

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)

We went to the Methodist Church today. It was so refreshing. It was communion Sunday, which was such a blessing. It's been a long time since I took communion. They anointed both Grace and Faith with oil and prayed for them and us. Such outpouring of love and support. And I don't know exactly how... (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)

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)

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)

(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)