Search Results: help

Pain and Poop
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)
Posted by joyful on February 28, 2024, 7:52 am
Category: Grace
Waiting and Watching
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)
Posted by joyful on February 24, 2024, 4:09 pm
Category: Grace
Day +12
Grace had a great day today. She went out for a walk, wasn't even too upset when Heather left for Hillsboro, waved at everyone as we walked down the hallway.  (She was especially adorable today because she brought a toy vacuum cleaner instead of her normal shopping cart, which is useful for... (More)
Posted by jondaley on February 20, 2024, 7:52 pm
Category: Grace
Visiting Instructions / Mailing Addresses
As of April 8th, we will be home and the information in this post is out of date. Click here (or see below) for instructions to visit or send us mail. Hospital Mailing Address Grace Daley, 6 West Boston Children's 300 Longwood Ave Boston, MA 02115 Hospital Visiting... (More)
Posted by jondaley on February 19, 2024, 1:50 pm
Category: Grace
Day 9 a bit better
Grace had a fever overnight so Saturday morning they gave her Tylenol. She seemed a bit better, happier. She even gave me some smiles. She did not throw up all day. I suspect morphine as a cause, and I avoided pushing the button. The Tylenol seems to help enough, so I asked the... (More)
Posted by joyful on February 18, 2024, 9:25 am
Category: Grace
Wanting to eat but not keeping it down
Days +2 and +3 have been full of desire for eating but not the ability to keep it down. Also, bare bottom and oxygen blowing has been keeping the diaper rash from getting worse, and it might even be a bit better.  She has lots of diarrhea.  She has been sleeping a lot. She had a... (More)
Posted by joyful on February 11, 2024, 2:23 pm
Category: Grace
Day 0 - Waiting
Faith's surgery went well. Her vitals stayed stable the whole time and they are all happy with how it went. She said coming out of anesthesia was just like waking up in the morning only she couldn't lift her head at first. Jon went down to be with her and I stayed with Grace. Grace threw up... (More)
Posted by joyful on February 8, 2024, 2:24 pm
Category: Grace
Day 0 - Harvest
Faith's surgery is scheduled for 7:30 this morning.  We don't know how long it will take for the lab to process her marrow and then get it to Grace yet. Here are some pictures from yesterday. (More)
Posted by joyful on February 8, 2024, 4:25 am
Category: Grace
Day -1
I woke up at 6AM because it turns out that is when the hospital does weekly generator checks which involves the power going out, which shuts off the ventilation fan briefly and triggers these color changing lights (that we didn't know about previously, see below), and so the nurses run around to... (More)
Posted by jondaley on February 7, 2024, 12:24 pm
Category: Grace
Nausea
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)
Posted by joyful on February 5, 2024, 10:50 am
Category: Grace
Admission Day and Chemo Begins
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
Her smile is still cute
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
Sunday blessings
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)
Posted by joyful on January 14, 2024, 1:39 pm
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
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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