Daley Ponderings

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.

June 2025 Biopsy Results!

jondaley — Fri, 20 Jun 2025 14:35:47 -0400

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 this last week, I had eliminated a couple possible theories. The clerical copy and paste error wasn't correct, because there were some small changes from the previous test. The false positive result is quite unlikely.

Two new theories emerged this week, that Faith's marrow is successfully working in Grace, but had become "infected" (probably not the right word for gene mutations) by Grace's JAK3 mutation, and the second is that Faith actually has the JAK3 mutation herself. It turns out that the latter is most likely the right answer. We've been talking and emailing the doctors over the last couple days and it turns out that the JAK3 was originally reported as pathogenic since it was in the presence of leukemia, but they are now thinking that it is a "regular" mutation and not going to be a problem. Faith's bone marrow wasn't tested, but JAK3 (and others) can be detected in the blood, but, basically, since she is old enough that if it was going to cause a problem, then weren't concerned about it, and so the pathologist who saw Faith's results considered it a normal variant and it was "filtered out" of the prior reports. They are going to go back and modify some of the reports to make it more clear for future readers.

It is also likely that since both Faith and Grace have it, that either Heather or I have it as well. There is an immunologist at Boston who agrees with our oncologist that it is "overkill" but is willing to do some blood tests to do further checking. There are very few documented cases of this particular variant in gnomAD (good luck trying to figure out that site; even when I type in the specific protein alteration/variants, I still can't figure out how to find any useful data), but there is a similar variant that causes some immune system problems, so in the interest of reducing anxiety, the doctors thought it could be worth a meeting and a blood draw, but they don't expect anything interesting to come out of that. We aren't currently due for a visit to Boston, but the doctor suggested we schedule one for Grace and Faith and meet with immunology on that day, so we'll probably do that once summer vacations and trips are over.

We can't quite tell if the chimerism test result came back, as Heather and I interpreted an email differently, but other related tests don't show any presence of JMML, so everyone thinks everything is still going well. And I forget if I wrote this before - Grace's blood tests are the closest to within normal limits than any test I can remember. She just has a few tests (out of ~30) reporting just barely outside what would be normal for the general population, and her "normal" isn't normal, at least not yet, so nothing interesting to report there either.

Her loaner hearing aid is doing well, and we are going to purchase one at her next appointment. (probably the main reason to do that is if we lose or break the rental one, we have to buy a new one, and the owned one has insurance). She went swimming yesterday and it wasn't until after I dunked her under that I thought to remove the hearing aid, but fortunately, Heather and Joy are more on top of it than I, so it was already taken out...

She continues to impress everyone taking her daily medicines, she now takes them without water, but just swallows the pills, though does still insist/enjoy the post-med tic tac.

She'll be going to Dartmouth on July 9th for a pretty extensive workup: audiology, opthamology, MRI, CAT scan, and the regular blood draws.

One Year Transplant Anniversary!

joyful — Sat, 08 Feb 2025 09:56:35 -0500

Today is Day +365. One year ago, this is where we were:

Today, Faith is recovered enough to participate in On Belay's Teen Winter Outdoor Adventure (pictures may come later, since she is there as I type.)

Grace had her first post-chemo haircut (just bangs) the other day.

Even more expert at using chopsticks now:

Little girl hugs:

We plan to celebrate as a family by going out to a restaurant tonight and watching Spy Next Door.

We are so thankful for God's grace and all your prayers and support to get us this far.

The spot on Grace's ear has lightened and shrunk! Keep up those prayers! It looks like God is answering my prayers to heal it up before the MRI. Praise Him from whom all blessings flow.

I'll try to get a picture of Grace and Faith together on this anniversary. Hopefully our whole family!

HD Girls' Soccer Orange Out Game - September 11

joyful — Mon, 02 Sep 2024 11:44:20 -0400

Faith's soccer team is having a leukemia awareness game in honor of her and Grace and our family.

September 11, 2024 4:00pm

Hillsboro-Deering High School soccer field

It would be great to see any of you who can come!

Update - Sorry!

joyful — Sun, 01 Sep 2024 06:56:28 -0400

So sorry I left you hanging. Grace and I went back to Dartmouth the next Friday. They did her bloodwork and the creatinine was just fine, so they were reassured and sent us home without further testing. She has been doing well.

Faith has had two soccer games now, and is also doing well. Thank you for your continued prayers!

Day +196: Long Clinic Visit, Kidneys?

joyful — Wed, 21 Aug 2024 17:19:46 -0400

Jon and Grace just got back from a very long clinic visit at Darmouth. Jon did not have time to tell me much, since he had to catch up on work.

Grace's creatinine level was high, so they are concerned about her kidney function. They double-checked that number and it was still high. As far as I can see from the lab results, the other related numbers look fine. Grace is scheduled to go in on Friday for a kidney ultrasound.

In the realm of good news, Faith is improving steadily and has been able to participate in soccer.

Hopefully, more detailed updates soon.

Waiting for results

joyful — Sun, 30 Jun 2024 06:41:55 -0400

Screenshot of a video call on Thursday:

Friday's procedures went well. They got plenty of marrow for their tests. The endoscopy showed the esophagus healthy. The sigmoidoscopy showed her colon quite inflamed. The surgeon could not tell the cause, but was confident that the pathologist would be able to. She woke up fine, though with some cardiac irregularities that settled themselves.

A dear friend visited all day Saturday, and this is what Grace looked like on a video call that evening:

She was eating a bagel, laughing at her brothers, talking, playing.

They are now just waiting for the colon biopsy results. There's some conflict of advice between GI and nutrition. Hopefully, with results there will be a clear path for what to do with her diet.

The rest of us went to an On Belay family activity day on Saturday, which was nice. It's been a good program for the kids these last several months. www.on-belay.org

However, Faith was in pain by lunch and could not participate in the high-climbing activities. She was really bummed about that.

Sorry about the orientation, I can't fix it on my phone.

Today is our 23rd wedding anniversary. Plenty of ups and downs for our family in those years!

Bone Marrow Donation Isn't All Its Cracked Up To Be

jondaley — Fri, 21 Jun 2024 20:37:05 -0400

When Faith signed up for the donation, she was told to expect one or maybe two days of significant pain, and then a week of pain that should be managed with Tylenol and then no running and jumping for six weeks, even if she felt like it.

She had 3-4 days of significant pain, and has certainly gotten better since the first week, but at more than 4 months, continues to have 2 out of 10 pain 24 hours a day. And more pain if she exerts herself too hard.

Grace's doctors referred Faith to her primary care, who took some x-rays and referred her to physical therapy. The x-rays didn't show any fractures. The physical therapist didn't really know what to do, in that she didn't know anything about bone marrow donation, but asked a bunch of good questions and gave her some exercises to do daily. She is supposed to go back to her primary care if she is still in pain in a month or two. We did find on Google that 4% of donors are still in pain at 9 months and 1% are in pain at 12 months, but the cancer doctors said that Faith shouldn't be in that class of donors, since she is so young. We do wonder if the "hard time" the doctors had when collecting the bone marrow would result in this extra pain, but we don't know.

Faith wants to play soccer in the fall, but if the pain continues, will not be able to. She would appreciate your prayers as she tries to rest, but also work on getting her body ready for soccer.

Faith is 15 1/2!

joyful — Wed, 06 Mar 2024 12:56:08 -0500

Pocket Notes

joyful — Sun, 30 Apr 2017 00:00:00 -0400

I am posting my backlog of pocket notes. Sometimes details are sparse.

4/1 - JPD, "'I'm goin' back to my work, after watchin' Jonathan do that awesome trick,' said Popcorn Man."

4/1 - Nathaniel started saying "yes" clearly - so cute!!

4/3 - NPD do turtle puzzle, self w/ encouragement

Noah and Faith's first cruise with Grandma and Dad-o is in here, but will
get a separate post.

4/17 - Nathaniel started saying the /n/ sound instead of /d/, as in Noah, not Doah.

4/20 - Nathaniel "nair" = in there

4/22 - Nathaniel, "doo, one, see-woh, zjump!" (two, one, zero, jump)

4/22 - Joy watched me do the door lock code at the fire station. She then
commented, "I know the code! It's [lists digits], sharp!"

4/24 - Nathaniel said, "love you!" for the first time.

4/27 - Nathaniel got his first two year molar, lower left.

4/28 - Nathaniel slept eight hours straight!