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 med for that.

Jon and I finally finished chapter 1 of our Escape the Crate, which was fun. This context definitely requires us to do the untimed version.

After that, we played Board Game Arena with the kids at home and that was good. Then all of a sudden it was bedtime!

I spent that night (Thursday) at the apartment again and I slept much better on the different mattress. Jon, however, did not sleep well at all because of all the hospital things in the night.

After I got there, it was a flurry of activity. The day's volunteer came in and asked if we wanted her to play with Grace, and we jumped at the opportunity to go on a date. But "jumped" in hospital time really meant, in an hour, we got to go on our one-hour date. There were visits from the social worker and the nutritionist. The nutritionist gave us two more menus, including a shake and smoothie menu, which is fun. The hope is that we pack as many nutrients as possible into small packages if Grace does not feel like eating much.

Jon and I left the hospital tgether for a quick date, and then he dropped me off at the main entrance and headed back up to NH for the Maranatha Father Son retreat.

I then got Grace lunch and after that, played part of a game online with the boys. They had to leave in the middle of that game to meet Jon up at Maranatha. But I played with the girls several games while Grace napped. 

After she woke up, we got the approval! Grace's pathology labs came back negative and she was cleared to explore outside the room!! Unfortunately, I was so excited about it, I neglected to tell her that "outside" did not really mean the real outside. So she walked deliberately and quickly down the hall to the end and waited for me to open the doors. So I apologized and explained my mistake, and she reluctantly turned around.

But we found the playroom and got out some paints. The afternoon volunteer is a young man who's in pre-med and wanted to work on the patient relations side of things. He painted with Grace for a while. Then she played with some toys and I had to show her that putting them away does not mean back to the shelf you found them, but to the dirty toy bin.

 

For dinner, she had a chicken quesadilla and it only came with one salsa this time. So I ordered more salsa because she was eating a good amount but only if she could dip it in the salsa! At first I asked her if I could get her some ketchup, but she said, "Sauce!" The kitchen does not seem to mind in the least if all you order up is salsa, so that's good to know. (:

At bedtime, she was able to be unhooked for a while, so we took advantage and went for a freedom walk in the hallway.

 We didn’t actually get to sleep until much later, though, because the pharmacy was late with one of the meds, and, well, things just take a while.

But once Grace did fall asleep, she slept through everything, and I slept through most of it. Apparently, though I’m a lighter sleeper than Jon in general, I can ignore beeping better than he can, even in my sleep. I think there is a switch in my mind that says, “not my responsibility.” I really woke up at shift change and then got up when Grace woke up at 8.

She wanted to go for a walk right away, but was patient as I ordered breakfast and got dressed. We walked the whole hallway and partway again before coming back to our room. She is now accustomed to turning around at the exit doors.

We got out some snacks while we were waiting for breakfast, but when she sat down to eat them, she asked me to put them all “way.” Once breakfast came, she was happy to eat some of it (especially the bacon and eggs.) But then she had to have her morning oral meds and she unhappily took them and then complained that they were yucky. So I suggested having some eggs to take the taste out of her mouth, and she gagged on her bite and spat it out. So I think that was her first sign of nausea. The nurse asked me if I wanted to try giving her extra anti-nausea meds, but I figured we should wait and see how it went. That turned out to be a fine decision because she has been better since then. At some point, she ate a bunch of saltines with salsa and we discovered that cranberry ginger ale is a good way to get her to drink fluids! In the middle of that snack time she also went back to her normal, cheerful, silly self.

I went to a parent advocate group coffee hour and met a couple of moms who had been here with their kids a few years ago. I learned that there is a garden on the roof with a nice view (though it is cold this time of year.) And I got Grace a few stickers from the resource room. If anyone feels like sending Grace anything, she loves stickers (more than bacon, ha ha!) and uses them up quickly.

 At lunch she ate a reasonable amount and didn’t complain about anything. We’ve been for a few walks in the hallway today, built blocks, peeled stickers, and of course, gotten chemo and medicine.

 On one of our walks, I met a mom (“D”) whose 15-year-old son just came here three days ago. So we will likely see them a lot over the next month. She commented that it must be hard when they’re so young they don’t really understand what’s going on. Well, yes but she also doesn’t know enough to worry, either. We all have our own kind of hard.

 Today is the last day of this first kind of chemo, and tomorrow starts another kind. That kind can be especially hard on the kidneys, so they pump the patients full of fluids so they pee all day and night. And then they measure levels in all that urine.

 My cousin and his wife (who is a doctor here at Children’s) stopped by to say hi. I played games with the girls. It has taken me all day to write this post, and people are getting curious! So here it is. (:

Posted by Heather Daley on February 3, 2024, 5:44 pm | Read 745 times
Category Grace: [first] [previous] [next] [newest]
Comments

If we want to send stuff for Grace, where's the best place to mail it to. Is there an address there or where you and Jon are staying?

Posted by Dstb on February 3, 2024, 6:02 pm

Please send an email or PM to us for our apartment mailing address.

I just spoke with a nurse who says you can get mail delivered to the hospital.

Grace Daley, 6 West
Boston Children's
300 Longwood Ave
Boston, MA 02115

Posted by joyful on February 3, 2024, 6:12 pm

Thank you for taking the time to write these updates.

How do they test her urine? Squeeze out the diapers?

Posted by Linda Wightman on February 4, 2024, 6:33 am

Good to read your detailed updates and see photos of Grace. d

Posted by Heidi Johnson on February 4, 2024, 6:54 am

Good question. During the day, they have her sit on the potty. (Even non-toilet training kids go often enough that they can produce samples on the potty.) During the night, they put cotton balls in the diaper which yes, they then squeeze out!

Posted by joyful on February 4, 2024, 6:54 am

Love your posts. You and this journey are in my prayers every day. d

Posted by Nancy Shee on February 4, 2024, 9:21 am

We are happy to report that the above address does work and Grace has been happily applying Auntie E's stickers as well as the electronic drawing pad.

And I just opened Aunt Cinnamon's stickers as well!

Posted by jondaley on February 7, 2024, 1:09 pm
Add Comment
Add comment
E-mail me when comments occur on this article

culpable-adaptable