Daley Ponderings

Some pretty good appointments yesterday, and the snow (9 inches?!) wasn't too bad at all driving up to Dartmouth (one car sped by our line of traffic and a couple minutes later was spun off the road in the median, but she was already out of the car and on the phone, so presumably was fine, but... (More)

Short version of the post - all good results!  You can read the longer version below. We are very happy and it has been a weight off of us.  Until a couple days ago, it was seeming like it was quite likely going to be a bad answer, as we've been praying and thinking over... (More)

As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma , and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there... (More)

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)

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)

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)

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)

We have lots of good news to report. Grace has been improving the last couple of days.  Her abdomen measured 53.5 cm, the smallest it has been in weeks.  They have changed her cyclosporin from IV to NG (nasogastric) which is a step towards getting ready to be discharged.  The... (More)

The last several days have been back and forth. I’ve started several posts in my head, and then they end up changing. The weekend doctors cancelled the stool studies, then the attending on Monday re-ordered them. Jon had some very frustrating conversations with the doctor, but an... (More)

Once again, it was good for me to visit home. This time, I brought Joy back with me. We left later than I meant to, for various reasons (one being the second batch of Victory tshirts came in!) so we had a bit more traffic in Boston than I have yet driven in. It was stressful for Joy, I think,... (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)

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)

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)

We haven't been blogging much, just living life and having fun together.   But, it is sort of sad that Grace didn't even have a category for her until today.   We are working on more content and to make a central place for people to get information so we don't have to... (More)