Daley Ponderings

MRI/visit results

joyful — Thu, 05 Feb 2026 20:11:29 -0500

The MRI went smoothly. The anesthesiologist listened to Jon and adjusted some things, and it seemed to be good.

There is not a glioma on her eye. Her plexiform neurofibroma is about the same as it was last time. (They were concerned about some abnormal tissue in her right cheek, but that's where she fell down the stairs the other day. It was a particularly bad bruise.)

We are taking a break from the Koselugo for two weeks to work on getting her rash under control. We have a new steroid cream to use.

Her TSH went up, so they have upped her levothyroxine dose again. I don't know what it means for the T4 number to be good but TSH to be high, but we have another Endo appointment next month.

Day +725 update, MRI this week

joyful — Mon, 02 Feb 2026 15:36:38 -0500

Well, it's been a couple of months since we posted an update. We're thankful for this break from medical appointments.

With the dry weather, Grace's skin has really broken out. It gets dry and itchy, and then she scratches so hard that she makes herself bleed, and gives herself welts. So our nighttime routine involves slathering her with cortisone and Vaseline before she puts her pajamas on. I've also tried cutting her nails more often and filing them more often, but the thing that works best is just having her wear mittens to bed. Her pain tolerance is still so high that she doesn't really realize that she's scratching herself to excess.

Wednesday, she has her long MRI, for which she will be sedated. This will be to get a good detailed baseline for checking out the possible tumor on her eye, and for checking on her ear tumor. If her ear tumor is looking good and small, we may take a break on the NF medicine to give her skin a break.

Yesterday, we went out to dinner to celebrate two years since Grace's transplant! (The official day is next Sunday, but this night worked out better.)

Some Grace quotes:

12/23 - "The big toe is called 'Market.'"

1/9/26 - I exclaimed, "How can it be Friday again!?" And then Grace said, "Mom! It's 'cause the calendar goes 'round and around and around. That's what it does."

And pictures of a happy shoveler during the big storm:

Appointment Yesterday

jondaley — Wed, 03 Dec 2025 10:38:16 -0500

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 hopefully learned that the passing lane during snowstorms is more difficult to drive in because there are fewer cars and so more slippery). Sutton was snowier than I would have liked, so I took the highway the whole way home.

Opthamology

I got to see the actual MRI results, and some of the pictures are terrible - with huge movements making the images basically useless. I thought the tech would have been able to see that and re-do particular images as they came in, but maybe not, or maybe it is too expensive time-wise.

I could sort of see/understand the "widening" of her right optical nerve vs her left, but I guess we don't have a good picture from May to compare to, so we are going to have another MRI in February (or hopefully January which is potentially better for insurance reasons). The opthamologist reported that functionally, her eyes are fine, and they were (of course!) surprised by how much she can follow directions and they were able to do eye tests that they can't usually do on kids that are so young.

Neurology

She said that statistically, 14% of plexiform neurofibromas turn into malignant cancerous tumors, but out of the 500-800 kids she has seen over the last 20 years (they transition out of her practice in their 20s) she has seen maybe 3 PNs turn cancerous. I think the 14% number comes from adult studies, so that might be in her future.

Side-effects

We asked some questions about supplements for the side-effects she has been having from her meds. We had gotten some recommendations about taking fish oil for her skin and protein powder for her hair. The doctor uses protein powder herself, but as it is unregulated, she is concerned about getting the right kind, and there was also a recent study showing a "particular mineral", (she couldn't remember what) that was in the powder, and when Jonathan googled (since he is taking protein powder himself) he saw that some of the powders have been found with elevated lead levels (I think most of them violated the Proposition 65 stricter standards, but a few were violating or close to violating the FDA standard). She also pointed out that with Grace's borderline kidney results, adding in protein powders (that are filtered out by the kidneys) would likely be a bad idea. She did support Grace getting more protein via dietary methods, and I expect we'll have an appointment with a dietician in the near future, as that came up a couple times throughout the conversation.

She said she would talk to the Koselugo vendor and see if there were any issues with probiotics or fish oil.

We talked about my expectation that being on Koselugo would inhibit/reduce any future fibromas, and so was surprised when the new glioma appeared on her optical nerve. She said there is an active trial to use Koselugo for optical gliomas, but it isn't as targeted for them, and so if the optical glioma ever causes eyesight issues or maybe even if it continues to grow (which she was careful to say it might not actually be growing, but just wasn't seen on the first MRI due to where they were looking) she might switch to a different med (which isn't as targeted for PNs, so not good on that side).

We also talked about the increase in her skin side-effects (though once we took off her shirt, I saw that it was better than a week or two ago and after I got home, Heather verified that it has been getting a lot better since she has been more careful on always using the skin lotions) and how she didn't have a "peak side-effecfs at 3 months" as expected, but got worse around 7 months or so, but basically the answer is just that everyone is different, so nothing really to make of these symptoms now.

Plexiform Neurofibromas vs Sub-cutaneous and Cutaneous Neurofibromas

The doctor also explained some more about the difference between plexiform neurofibromas and "regular" neurofibromas. The PNs are congenital (existing since birth), so it is likely that she doesn't have any other ones. They grow along the nerve sheaths and these are the more serious ones, both in terms of potentially becoming cancerous at some point, and also potentially disfiguring at some point, though she thought that Grace's current PN wouldn't be disfiguring, which isn't intuitive to me, since it seems like it is exactly in the place that could cause facial growth/changes, etc, but basically we will deal with that when we get there, and not worry about it now anyway.

On the other hand, I thought the reason she gets regularly scheduled ECGs and MRIs is to look for new PNs and I thought those were going to continue for a while, or maybe her whole life, but maybe the statistics of them happening goes down over time. I think this doctor might like to take the optimistic stance, and our oncologist likes to be pessimistic and then be happy if the worst things don't happen. There are pros and cons to each method I suppose and probably good if we know which "box" a particular doctor is in, so the statements can be filtered one direction or the other, as the pessimistic statements, while good for preparing for bad things, also leads to overthinking what might go wrong.

The regular fibromas can be on top of the skin or under the skin, and those can appear at any time, typically spikes during childhood growth, and then at other times throughout adulthood, triggered by a variety of sources. And then are sometimes just bumps that don't need to be treated, or sometimes are painful and/or restrict motion, etc.

Blood Lab

Story time: I've often had a bad experience at Dartmouth's blood lab (as opposed to getting blood drawn/IV inserted in a specialist's office within the hospital). Last month, I had the MRI team leave her IV in since she was getting blood drawn, but the blood lab isn't allowed to use the inserted IV for blood draws, but need a specialist team to come, who they forgot to call, so we waited an hour with repeated assurances of they will be here any minute. I finally asked if they could remove the IV and just do another IV, but they aren't allowed to do that either, so I asked for a bandaid from the receptionist (who agreed the whole thing seemed very strange), and the technician's response was to call security on me because apparently they thought that was crazy risky to remove an IV on my own (which probably Grace knows how to remove it in a sterile manner and definitely she knows about keeping pressure on it, so I don't understand why the tech can't do it, and thinks it would be dangerous for me to do it), and when security got there, they couldn't figure out why they were called, and the receptionist agreed that there was no reason. But, at that point, I said I would go over to the oncology department where they could handle it. (It wasn't until later that I realized I should have asked the blood lab to put an IV in her other arm, and avoid the first IV altogether until we got out to the car). The IV team go to the oncology department just as I got there, and said they've had problems with the blood lab with other patients, and so weren't too surprised by the whole incident, and agreed that removing an IV was trivial. I submitted a formal complaint to the hospital, but never heard anything back. Oncology agreed to do the blood draws in the future, but I met with the neurologist in the opthamologist's office rather than oncology, like I had expected, and opthamology wasn't able to do a blood draw, so I figured I would try out the blood lab, and I think this was the first time they did the blood draw easily and without incident, though they still always get confused by the standing orders that tell them which vials to use, and ask me if I want to override the doctor's instructions or not; which also seems strange to me, but that happens every time I go to the blood lab.

Success and Results!

Anyway... her blood was drawn successfully, and her thyroid tests came back today and she is no longer "off the charts" and while not within the normal range, is looking better, so the increased dosage is working well. Her kidney numbers also look good to me, and the November tests appear to be an anomaly for some reason. Her red blood cell counts and some other "regular" bloodwork is still lower than she had been, so we don't know what is going on there, but the doctors aren't too concerned that it is "too low" yet (and it isn't trending downwards, in my opinion).

Next Steps

Nephrology

Grace has an appointment with a new doctor on Friday, which we'll look at her kidney results, and I imagine that appointment will be less interesting now that yesterday's results show that her kidneys are doing better.

MRI / Insurance

She has an detailed (2 hour), sedated MRI scheduled for her eyes on February 4th. The neurologist asked if there are any issues with another contrast-dye MRI since her kidneys were questionable (and the kidneys filter out the dye), so I'll check with the nephrologist on Friday, but I haven't heard anyone ask that question before.

Insurance is a little weird about prescriptions, and we've never gotten her Koselugo prior to the maximum deductible being hit, so I'm a little concerned that if her prescription comes in as the first expense in January, it might end up costing $7k or so (the monthly cost is $9k, but insurance has always paid 100% of it for the last 8 months). So, we are trying to get the MRI scheduled for before that, so hopefully we'll be able to fit in where there is a cancellation. I've talked to the pharmacy and the insurance company and they think it might work fine, but no one can know the actual answer until the dose is starting to be filled on January 10th. And they can't send a double-dose in December, which would also solve the potential problem.

Testing preliminary results

joyful — Thu, 13 Nov 2025 06:52:06 -0500

We have only read the test results ourselves and have not heard from any doctors yet.

Her TSH is uncomparable, since the tests they do at Dartmouth don't go any higher than ">100" so is it 400 again, or 101 or 1000? But her T4 was up, almost to the normal range. So hopefully that means her thyroid medicine is starting to work. Jon read something about hypothyroid diseases being passed to people through bone marrow donations. But Faith's TSH was normal just before transplant. Faith hasn't had that tested since November 2023. Jon has in inquiry in to the doctors at Boston Children's about that.

Grace's heart is perfect.

I think her MRI showed that her ear fibroma is about the same. But they reported that some results were not clear because she moved. Jon had been interested to note that she didn't fall asleep this time. Despite getting up very early and not even falling asleep in the car on the way up. (She told me, "It was dark, and then it was morning!") But the MRI report also says to further investigate a possible thing near or on her eye nerve. Please pray for us to not worry and for that to be nothing.

Her kidney numbers were good. Her iron and related numbers were on the low side.

Testing tomorrow and catch up

joyful — Mon, 10 Nov 2025 20:56:13 -0500

Grace is getting an MRI, and ECG, and bloodwork (including thyroid) tomorrow morning at Dartmouth. I'm not sure how much the thyroid medicine is working, so we'll see what the numbers say. Her skin is very dry and she has rashes in places, and also the dryness is itchy so she scratches it, sometimes to bleeding.

Today is day +641! What a big number, and we are thankful. We're coming up on two years since diagnosis and oh, how far she's come!

Grace turned four last month!

Making her own birthday brownies:

She can make fun shapes in her fruit: smiley oranges and bunny apples:

She went ice skating for the first time:

Two Boston Visits

joyful — Fri, 19 Sep 2025 14:33:42 -0400

On Sunday, we went to the Franklin Park Zoo. This event was hosted by the Jimmy Fund clinic for its patients. It was sobering how many families were there, and it reminded me how many different types of childhood cancer there are. We had a fun time, though . There was a bubble lady, face painters, free food and swag, and of course animals. There was a special event for stem cell transplant patients. It was surreal seeing some of her nurses again, one of the doctors, and other patients. There was one boy whom we recognized from the transplant floor. There was a girl there who was still on feedings, and I saw my other kids look at each other with knowing when her pump beeped an error. Grace said, "Look, Mom! Like me, a long time ago." Hope was overwhelmed with excitement about the giraffe that was nearby!

On Wednesday, both Grace and Faith had appointments in Boston. Faith to check out possible influences of the JAK3 mutation. Grace for her annual Boston checkup.

They both got a lot of testing on their blood. Dr. Prockop was happy with Grace's appearance.

But on Thursday she emailed because Grace has hypothyroidism. She made me laugh because of the way she phrased that we didn't need to go to the ER emergently. Apparently, with numbers like Grace's, that would be the protocol, but since she had just seen her, she didn't think it necessary.

So Grace will go on thyroid medicine today and is supposed to be seeing a Dartmouth endocrinologist next week. We will get more answers then, but it appears that this is related to her NF1 medicine.

And there are other tests that don't have results until next week.

So please keep us all in your prayers as we navigate this new complication.

And here's a photo of Grace looking cool at her brother's soccer game.

Day +571

joyful — Mon, 01 Sep 2025 06:15:37 -0400

Well, I didn't manage to post this yesterday when the day was a nice round, even number, so I get to post it today when it's a prime number!

This has been a full summer for us.

Noah was home.

Grace got to ride at Summerfest just like all the other healthy children! She had such a blast!

Grace was so excited to be able to go to the Maggie P. She has been looking forward to swimming at the Maggie P ever since last year when she couldn't swim because of her central line. She talked about it every month at least for the whole year, "When I go to the Maggie P, I'm going to go swimming!"

At playgrounds while Nathaniel was at Ninja Camp:

She loves hugging bananas and asks me to get a picture every time we buy some!

Smoothie mustache:

Being a Viking at History Alive:

Grace has been doing very well. One side effect we have now noticed from her koselugo is that her hair is thinning out. I'm very thankful that she does not have the more serious side effects, but I am also sad to see her beautiful wavy brown hair starting to come out again. (No, I do not know the future prospects for that and I keep forgetting to write to the NF1 doctor about it.)

Grace and Faith have appointments in Boston this month, and Grace has another hearing check in October.

Great results

joyful — Sun, 13 Jul 2025 06:43:24 -0400

Wednesday's many tests all went well. The MRI showed shrinkage of the tumor, especially around the ear canal (less so in the cheek/salivary gland.) The hearing test confirmed Grace's attestation that her right ear is significantly improved. Her eyes are still perfect. Her heart is also good, no changes.

So we praise and thank God for these results. And continue to pray for the tumor to shrink to nothing and for no side effects from the selumetinib. She occasionally has diarrhea, but one half dose of Imodium every couple of weeks is enough to keep it at bay. The nutritionist also gave us a list of binding foods that had more in it than the classic banana that Grace is kind of tired of. (:

She also got another stuffed unicorn, which she insisted on naming Candy Corn just like the first one!

They stopped by David's House after all the appointments and played at the playground a while.

Healing and Testing

joyful — Wed, 09 Jul 2025 08:47:37 -0400

Jon just put this comment on a recent post, but I don't think most people get notified of comments, so I'm posting it here:

She's getting an echocardiogram right now [July 9, 2025, 8:42am] , and then an MRI, regular oncology checkup, opthamology and audiology.
We don't expect too much interesting, though we'll see what audiology says.
I don't remember if it has been posted here yet [nope] but Grace told us that God has healed her ear and she no longer needs her hearing aid, so she hasn't worn it for over a week [two weeks] and I've only heard her ask for someone to repeat themselves a few times so I'm hopeful that her tumor is shrinking (which is faster than expected). I'm curious to see what the hearing test says and whether they'll want her to wear it even if it is getting better - there is some brain training that is good to make sure it is used to using both ears.

Day +500

joyful — Sun, 22 Jun 2025 21:49:14 -0400

Today is Day +500 and we have much to rejoice over!

We are so thankful for Grace's good marrow results, so thankful to reach this milestone.

I feel so much lighter now, and the smaller things that bothered me last week don't seem so bad anymore.

Here are some recent pictures and quotes from our Amazing Grapey Grace Victoria:

Someone was talking about tax, and Grace thought they said tictacs, so I said it was spelled T-A-X, and she replied, "E-A-O-B: tictacs!"

Me: "Why do you have to ask a question about everything I do?"

Grace: "'Cause my voice has lotsa questions!"

When we all had sore throats: "Why Daddy not reading, mom? Daddy's voice is itchy, too?"

Grace's first time painting pottery.

Little pigtails; we think she looks like Boo from Monsters, Inc.

Hiking

She called the Rubik's cube "cuber-solve."

Jeremiah wasn't careful when he sneezed, and Grace said indignantly, "Don't bless you on me!"

She cut her own bangs; "Now they're not in my eyes anymore!"