Daley Ponderings

Sorry we left you hanging about Grace's recent appointments. Here are some things to be thankful for about Grace. She did really well during her audiology appointment. It took a long time, but she followed all the directions and was cooperative as usual. She does still have some hearing loss in the right ear. It's the kind of loss that's associated with fluid or congestion, which is why the Boston audiologist wasn't concerned because she had just gotten over COVID then (in January.) This audiologist also wasn't concerned because to her that means temporary loss. But I pushed her because Grace has not had any congestion or a cold in a while. So she referred us to an ENT to check out the ear. We have not made that appointment yet.

The next day, Jon took her back up to Dartmouth for her followup leg xray. The orthopedist was very happy with the healing. Jon was concerned because he could see a buildup of bone in the broken spot, but the doctor said that will go away with time. She also said that you could see the growth "rings" (like a tree!) and if you measured precisely, would be able to tell the dates of when she stopped growing. She was assuming that would be chemo dates, but we know she stopped/slowed her growth much earlier because of the leukemia. We are hoping she will do some catch up growing, but three years old is when the growth curve starts leveling off. The orthopedist figured Grace would also level off and just be short her whole life. So we will see.

Jon also talked to the nutritionist that day and got some guidelines for moving towards getting the NG tube out. Grace had her last dose of cyclosporine last Tuesday! So now the only thing she gets through the NG tube is formula, and some water to flush the tube when the bottle is finished. We reduced her feeds to one bottle a day a few days ago. We aren't counting the calories she is consuming by mouth, but it looks good so far. And the nutritionist said that as long as Grace is not below 11kg by February, she'll be happy. So we have a couple of kilograms of leeway as we reduce her formula and get her to eat all by mouth.

Grace easily (with gentle reminders) drinks her 600mL of liquids in the day. So we really have only been giving water in her tube to flush the formula. She tolerates a nice high rate from her pump, so her one bottle is done in just under two hours. So that means she is backpack-free for most of the day! Soon she will be tube-free, and that will be quite the day of rejoicing! We are anticipating that to happen before Christmas.

And we're trialing introducing dairy again. She is now having baked in dairy - brownies, rolls, that kind of thing.

She still has one more medicine to take, an antibiotic to replace one that she used to get in her central line once a month. This one is oral at my insistence. I decided that we would not even give her the option of putting it in the tube. It looks exactly like bright lemon-yellow acrylic paint, texture and all. She says it "tastes bad" but she swallows it like a champ every morning, quickly followed by some water, almond milk, and whatever breakfast food she's eating. (The first week or so, I gave her a candy corn chaser, but now she's satisfied with whatever's in front of her.)

All her bone marrow results came back good - her marrow and blood are still all Faith's, praise the Lord! And we have not seen any sign of GVHD even as her medicines are off.

As the one-year anniversary of her diagnosis approaches, I am doing a lot of remembering. We have so much to be thankful for. We had Daley Thanksgiving on Saturday, and we all remembered the previous year's event when Grace was only allowed her colonoscopy cleanout prep and clear liquids while the rest of us feasted. During church yesterday I was thinking how at this time last year, after her colonoscopy, Grace was pale, anemic, tired, with a distended belly and concerning output. In my memory, I can fast forward to now. (The day in and day out of living the last year was anything but fast. But it really does work to put one foot in front of the other and eventually get somewhere.) Now Grace is so vivacious, happy, pain-free and VICTORIOUS! I am so thankful for the healing transformation of this precious little girl.  I'm thankful again and again for God's grace to sustain us and for God's people to be his hands and mouths to support us in the whelming flood.

Swimming!!

Shopping without wearing a mask.  She wanted to hug the bananas. (:

Look at that hair!

Thinking of how God has healed the physical as we step through life one day at a time, we also need to persevere in the emotional/mental healing. I do see improvements in our family and individual wellbeing, but there is still more healing needed. There are fewer bad days, but they do still come.  We are going to a friend's condo in the White Mountains for a family retreat this week. Please pray that it will be a blessing to our relationships.

On Christ the solid Rock we stand!

May God bless you all this week and I hope you can find plenty to be thankful for, whether your country celebrates it officially or not.

Last weekend, Heather took all of the girls on a retreat and had a lot of fun together.  Those of us at home had a work day at Grammy's and another friend's house and then had a really great day at home with a friend from church.  Elbereth, Jonathan's snake, was out and various people were holding her and then she was resting on the olympic rings in the kids' bedroom.  Apparently, when we dispersed, no one remembered about Elbereth and so at some point, she must have gotten tired of hanging on and dropped to the floor (probably a four foot drop), and then looked for a nice dark place to hide, which was in Nathaniel's bed!  We didn't notice until today, two days later, because she often hides in her wood shavings, so no one thought much of not seeing her, but Jonathan went to clean the cage and found she was gone.

Faith found Elbereth at the foot of Nathaniel's bed, and Jonathan discovered that she had wedged herself in between the bunk bed and the wall and was unable to go further forward, and snakes aren't capable of going backwards, so she was completely stuck.

We used a crowbar to move the bunk bed (6 beds all connected to each other) a little bit so Jonathan could extract her.  She appears to be fine and none the worse for wear.

The appointment with the NF1 doctor went well. One of her oncology doctors was also there, the one who works closely in the NF1 world. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be thankful for from that visit. They are sure that her fracture is from steriod weakening and not NF1. The kind of bone issues that NF1 causes is not evident in her, and it would be by now. Several other NF1 symptoms are also ruled out for the same reason.

But there is still the possibility of developing brain tumors. This is why she is scheduled for eye exams every six months for the rest of her life. They are working on a trial of oral chemo that looks promising. Because there is no sign of brain/retinal tumor in Grace now, that study will be finished before she would even need it. And we pray that she never will! I think they said she'll get a brain scan every year, but they did not do one this time. She had an eye exam in June and will have one next month. And they asked about her cognitive development. The tumors really affect that, so we are reassured by her development there. Jon asked me to look up milestones for three-year-olds and the only things she is behind in are some gross motor skills like jumping/hopping and riding a tricycle. (She tried riding a tricycle the other day, and her legs did not reach the pedals!) I had already planned on taking her to the playground more often, but that now has to wait while her leg finishes helaing. That is on the mend, she does not limp much at all anymore. She still has some flareups occasionally, but the curve is dampening.

Jon and Grace are off to Boston for her bone marrow aspirate. He just spent all day yesterday at the polls, literally, from 6:30am-11pm. And they had to leave at 5:45 this morning. Prayers for alertness while driving. Bless her marrow that it's 100% Faith's. Bless the procedure and anesthesia. Bless our little Amazing Grapey Grace.

Fun quotes from the last weeks:

9/7/24 - Nothing like older brothers to help you develop cognition. When she was in an "answer everything with 'no'" mood: "Grace, are you dumb?"  "No"  "Are you not dumb?"  "Not dumb."

9/11/24 - "Mommy, all done eat my eggs.  Please wash it, my fork."

9/11/24 - "Hope 'wake now. Not sleeping."

10/26/24 - Nathaniel and I were talking about when Grace can shower and bathe now that her central line is out. Grace then exclaimed, "Swim! Me swim! Maggie P! You come. Hope come."

Monday, 11/4/24: The kids were doing a survey for fun.  "What's your first name?" "Grace" "What's your middle initial?" [they helped her say 'Victoria' and that it starts with V] "What's your full name?" "Amazing Grapey Grace!!"