https://blog.limedaley.com/ Recent content on Daley Ponderings Hugo en-US Wed, 30 Sep 2026 14:27:49 -0400 https://blog.limedaley.com/post/update-long-overdue/ Wed, 30 Sep 2026 14:27:49 -0400 https://blog.limedaley.com/post/update-long-overdue/ Lest you think nothing has been going on, here was Grace's medical schedule since we last posted. 8 visits to primary care for vaccinations - she had to restart over as a baby, and get all of them over again - just one left, plus flu and COVID, which oncology told us yesterday they highly recommend for Grace since one of the chemos she received can cause long-term lung problems and she is more likely to have a harder time with respiratory illnesess. https://blog.limedaley.com/post/hymn-sing/ Sat, 20 Jun 2026 14:36:56 -0400 https://blog.limedaley.com/post/hymn-sing/ I don't think we've ever announced it here, but we have been hosting hymn sing and pizza nights on most Fridays for the last six years.  We start at 5PM (ish - sometimes we don't actually get the pizzas out of the oven until 5:30, but ideally dinner starts at 5...)  And then the singing starts around 6 or 6:30 and we're generally done by 7:30 or so. You are all invited - we generally have it every week, but there are weeks where we are gone, and we make those announcemnts on an email list, so sign up and we'll see you there. https://blog.limedaley.com/post/mri-visit-results/ Thu, 05 Feb 2026 20:11:29 -0500 https://blog.limedaley.com/post/mri-visit-results/ 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. https://blog.limedaley.com/post/day-725-update-mri-this-week/ Mon, 02 Feb 2026 15:36:38 -0500 https://blog.limedaley.com/post/day-725-update-mri-this-week/ 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. https://blog.limedaley.com/post/appointment-yesterday/ Wed, 03 Dec 2025 10:38:16 -0500 https://blog.limedaley.com/post/appointment-yesterday/ 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). https://blog.limedaley.com/post/isaac-s-23rd-birthday/ Fri, 21 Nov 2025 08:37:56 -0500 https://blog.limedaley.com/post/isaac-s-23rd-birthday/ 23 years ago, we started this blog to have a good way to keep everyone informed of how things were going. In some ways, it really does feel like a lifetime ago.  However, Isaac is still close in our hearts.  His life and death are a part of our family and influence our relationships to each other and to God. The thing that is blowing my mind today is that Isaac would now be the age that I was when he was born. https://blog.limedaley.com/post/testing-preliminary-results/ Thu, 13 Nov 2025 06:52:06 -0500 https://blog.limedaley.com/post/testing-preliminary-results/ 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. https://blog.limedaley.com/post/testing-tomorrow-and-catch-up/ Mon, 10 Nov 2025 20:56:13 -0500 https://blog.limedaley.com/post/testing-tomorrow-and-catch-up/ 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! https://blog.limedaley.com/post/hope-s-words/ Mon, 06 Oct 2025 07:53:09 -0400 https://blog.limedaley.com/post/hope-s-words/ hi mom/mommy/"mahmeemahmeemum" dad ball "bahw" dog "dah-dah" (she used that word for a cat yesterday also) bellybutton "bah-bee" bottle "baba" no wow bop (as in noses) baby hat/head "at" hot "ah" whee! happy up, (please) "uppy" out/in/open/close/on/off "ow" ow "ow" thank you "dah-doo" Signs: shoes, socks, please, more, thank you, change, toilet, hat https://blog.limedaley.com/post/two-boston-visits/ Fri, 19 Sep 2025 14:33:42 -0400 https://blog.limedaley.com/post/two-boston-visits/ 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. https://blog.limedaley.com/post/day-571/ Mon, 01 Sep 2025 06:15:37 -0400 https://blog.limedaley.com/post/day-571/ 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. https://blog.limedaley.com/post/sailing-trip/ Wed, 16 Jul 2025 04:27:31 -0400 https://blog.limedaley.com/post/sailing-trip/ Jeremiah and I will be with Heather's first cousin once removed and sailing from Florida to Connecticut starting tomorrow. We've thought about going in prior years, but the schedule never quite worked out, but this year we decided we would jump in; we don't really know what to expect, but should be fun.   https://blog.limedaley.com/post/great-results/ Sun, 13 Jul 2025 06:43:24 -0400 https://blog.limedaley.com/post/great-results/ 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. https://blog.limedaley.com/post/healing-and-testing/ Wed, 09 Jul 2025 08:47:37 -0400 https://blog.limedaley.com/post/healing-and-testing/ 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). https://blog.limedaley.com/post/day-500/ Sun, 22 Jun 2025 21:49:14 -0400 https://blog.limedaley.com/post/day-500/ 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, " https://blog.limedaley.com/post/june-2025-biopsy-results/ Fri, 20 Jun 2025 14:35:47 -0400 https://blog.limedaley.com/post/june-2025-biopsy-results/ Short version of the post - all good results!  You can read the longer version below. [@more@] 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. https://blog.limedaley.com/post/bone-marrow-biopsy/ Thu, 12 Jun 2025 13:40:43 -0400 https://blog.limedaley.com/post/bone-marrow-biopsy/ The test is done and we are back home.  Nothing too eventful to report.  Our regular physican's assistant did the biopsy, so got to talk to him a little bit, and he is going to research one question that we aren't sure about regarding what 97% chimerism test means. He did say false positives on a JAK3 test are possible, though very low probability.  He agreed that a clerical error would be ideal, but he didn't think that was too likely either. https://blog.limedaley.com/post/prayer-and-fasting-wednesday/ Mon, 09 Jun 2025 14:00:50 -0400 https://blog.limedaley.com/post/prayer-and-fasting-wednesday/ The day of prayer and fasting for Grace has been scheduled for this Wednesday, June 11, 2025. Please observe this in the way that seems best to you. Jon and Grace will be at the Hillsboro Methodist Church (16 Henniker Street, Hillsboro, NH 03244) from 11AM - 6PM. Pray for complete healing, continued remission, 100% tumor shrinkage, peace, and whatever God puts on your heart. And Thursday is Grace's repeat bone marrow aspirate. https://blog.limedaley.com/post/cast-your-cares-on-him/ Thu, 05 Jun 2025 05:08:03 -0400 https://blog.limedaley.com/post/cast-your-cares-on-him/ Jon was reading through Grace's test results and saw that the most recent bone marrow report mentioned the JAK3 mutation. He contacted her doctors because we thought that one was gone following the transplant. Dartmouth doctors can't see her Boston results to compare  so they contacted the head transplant doctor there. She said that seemed odd given the good chimerism results, but she wants another aspirate as soon as possible to make sure. https://blog.limedaley.com/post/hearing-aid2/ Fri, 30 May 2025 21:54:07 -0400 https://blog.limedaley.com/post/hearing-aid2/ On Thursday, Grace got her hearing aid! They did a whole hearing test so they could program the device to her exact needs. The inner ear test shows that she hears fine on that end. So the aid amplifies the sound so it can reach the inner ear.  She noticed new sounds right away, and she played around with her voice in the car ride home. She still asks us to repeat ourselves, but a lot less than when she doesn't have the aid in.