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Posted by Jon Daley on February 19, 2024, 1:50 pm | Read 136 times | Comments (5)
Category Announcements: [first]

Announcement: Team Victory!

Joy has designed a tshirt for Grace's cancer journey.
Grace wearing sample Team Victory shirt.Grace wearing sample Team Victory shirt.

We are selling them as a fundraiser for David's House. They cost us $20 each, but we're selling them for $10 minimum and any amount you give over $10 will be donated to David's House, the free housing we used while we were at Dartmouth Hospital.

Posted by Heather Daley on January 25, 2024, 10:34 am | Read 591 times | Comments (12)
Category Grace: [first] [previous] [next] [newest] Announcements: [newest]

The only known curative therapy for JMML is a bone marrow transplant, so we will be going down to the Boston Children's Hospital/Dana-Farber Cancer Institute. Their team is one of the leading cancer centers for treating JMML. We had our first visit on December 12, and are still processing what we learned. We have begun the process of getting everyone in the family tested as possible donors. When all is set for Grace’s transplant, Grace, Jon, and I will temporarily relocate to Boston.


The whole family got HLA typing tests and it turns out Faith is a perfect match (and Jon turns out to be an almost perfect match, which is quite interesting genetically.) We all got COVID over Christmas, so that canceled Christmas plans with the extended family and delayed Grace’s transplant process. (After a horrible day where communication lines got crossed and Jon drove Grace down to Boston only to have to turn right back again because her appointments were all canceled.)


Because of the delay, Grace got another round of azacytidine. Also, remdesivir for the COVID symptoms. Jon had to push to delay the aza a few days to avoid reducing her immune system while she was sick, but they did eventually listen to him. This time, he and Grace stayed up in a hotel near the hospital so he wouldn’t have to drive back and forth every day. Grace did great the first three days. They came home Sunday night and it was so nice to be together as a family again. Monday afternoon, they went back up and then they stayed at David’s House.

Grace and I (Jon) had a great time together for the most part - she did throw some unconsolable fits a few times so that was hard, both trying to keep her quieter to not disturb the other guests and also to figure out what she wanted - in many cases, I think she didn't really know, and the best solution seemed to be to fall asleep.

One sort of humorous note is that for a regular kid, when they are crying uncontrollably, they can't ask for anything at the same time, but Grace really loves sign language and has learned more than any of our other children.  And while she is screaming she can still sign at the same time, and I think it has been harder for her to learn than our other children that she can't get what she wants while yelling, because I think that is somewhat obvious to a child who isn't able to communicate while screaming.


Tuesday morning, Grace was quite sad – I (Heather) think she didn’t like the idea of being away again. So I went up Wednesday to take her to her appointment while Jon stayed at David’s House to get some work done.


I had lunch with her at David’s House and then played and talked in the room for a while. Then she was happy to have Daddy take her to the play room and say goodbye to me.  Though, unfortunately, when they got down to the playroom, there were others already there, so they didn't join them since we were getting over COVID.  We had some miscommunication with the David's House staff, as they don't have a COVID policy published, and had given us some different information and forgot to ask us the screening questions when we arrived, so we were allowed to stay, but were told to isolate and they probably didn't really want us there, but didn't want to kick us out either.

Before Heather left, she noticed Grace was developing mucositis. She was so uncomfortable and it was so sad. They gave us an ointment and sent a prescription to the pharmacy. It did help by the next day which was quite a relief, to us and to her.  We came home on Thursday and she has been much better since.

Posted by Heather Daley on January 8, 2024, 2:38 pm | Read 94 times | Comments (0)
Category Grace: [first] [previous] [next] [newest]

The pathology report indicated no parasites, and no bacterial infection, but confirmed the swollen lymph nodes. The doctor said, “I do not like the look of her paleness, and that spleen is really big. We need to see inside; go downstairs and get to imaging right away.” Grace had an x-ray and an ultrasound, confirming a much-enlarged spleen. At some point she had another blood test, which revealed severe anemia and a WBC of 55,000/mm3 (normal for a child of her age is 5,000-19,000).


We happened to also have her tonsillectomy pre-op appointment that afternoon, and as we were in the waiting room for that, Jon got the call from the GI: go to the Dartmouth-Hitchcock Children’s Hospital ER immediately. We continued with the pre-op appointment, but let him know that we might have to cancel the surgery depending on what happened at the hospital.


We drove all the way up to Lebanon from Manchester, meeting Jonathan partway to pick up an overnight bag, and Grace was admitted to the hospital. After more tests, they decided to give her a blood transfusion overnight. That was an adventure in itself, since they had difficulty putting in the IV (two failed attempts, even with a fancy video ultrasound to locate the veins, and after the successful infusion of two bags of blood, the third came detached and sprayed all over the room, an event that required not only extensive cleanup but reporting to the CDC! Eventually she received what she needed, and it made a great difference in her color.

The hematologist-oncologist interviewed us about Grace’s history. When I got to the part about the doctor not listening to me, she actually cried. “Always listen to the parents,” she said. “I’m so sorry that happened to you. Café au lait spots are the #1 indicator for NF1 (neurofibromatosis type 1).”

It would not be confirmed for a few days, but the doctors immediately suspected JMML (juvenile myelomonocytic leukemia). These are very rare conditions, caused by very rare genetic mutations; it is not an encouraging diagnosis.


On Friday, they put in a Broviac central line, which went super, super great. The first time they put her under anesthesia on Thursday (for a bone marrow biopsy) they had to try three times to get the breathing tube down her throat because of her swollen tonsils, so this time they went straight for a laryngoscope and that worked nicely. I was expecting her to be gone two to three hours, but she came back in an hour, everything having gone great. She woke up from the anesthesia well. She had one more blood transfusion after that. Her IV’s had been a problem; for some reason, they could put stuff into her, but they couldn't take blood out, so they had poked her all sorts of different places all over her arms. It was good to have the central line because then the rest of the labs were easy to draw.

Friday night she was officially diagnosed with JMML, so on Saturday she started chemo: one dose per day for seven days. This chemo is not curative but is intended for maintenance and to relieve symptoms. And it worked really well: after just a few doses her breathing and snoring became noticeably quieter, and she started sleeping a lot, including through the night. Her appetite also became ravenous; she had no obvious nausea from the chemo. The doctors said her body was attempting to make up for lost sleep and nutrition.


The hospital experience at Dartmouth was good. The nurses were great, the doctors were great, everybody was kind, nice, sympathetic, and careful. They even changed Grace’s diapers while she was having the chemo, since our baby must be protected in utero from those toxic chemicals. David's House, the facility where Jon and I alternated staying (and got some much-needed sleep) is a beautiful place. So peaceful, and they have thought of everything you might need before you think of it yourself.


The hospital food was not restaurant quality, but it was definitely closer to home quality and far from cafeteria food. It was so nice to be able to call up and order food for Grace and ourselves and have it delivered. They took good care of us there.


By Monday, Grace was doing really great and so we were sent home to do the rest of the chemo on an outpatient basis. That meant driving an hour each way, every day, and spending hours at the hospital, but we were so happy to have the family together again.


Posted by Heather Daley on January 8, 2024, 2:37 pm | Read 110 times | Comments (2)
Category Grace: [first] [previous] [next] [newest]

(this was written January 2024, referring to Grace's first two years of life)

When Grace was about six weeks old, right at the beginning of December 2021, I noticed that she had “café au lait spots.” I looked it up on the internet, and discovered that these spots are considered perfectly normal if there are fewer than six, but if there are more than six you should contact your doctor because it could be an indicator of something called neurofibromatosis.

I tried not to think too much about that at first. At about the same time, however, she started showing some blood in her stools. So I contacted our midwife, and she said, “Oh, that really looks like allergic colitis; you should come off dairy.” We were exclusively breastfeeding, so I eliminated milk from my diet, but it did not seem to help. At the time, I didn’t understand the difference between lactose intolerance and a milk protein allergy, so I didn't go off of all dairy; for example, I was still eating butter.

At some point before four months old, I had noticed that Grace’s lymph nodes were swollen, though at the time I didn’t know they were lymph nodes; I only knew that she had swellings around the back of her neck.

At Grace’s four-month doctor’s appointment, we were referred to a gastroenterologist for the bloody stool issue. When I mentioned the café au lait spots, the nurse practitioner said that she couldn’t have neurofibromatosis because if she did she would have a lot of obvious bruising. Neither was she concerned about the swollen lymph nodes. She mocked me for looking up stuff on the internet, and really didn't like the fact that we were not giving Grace any vaccinations. We are not generally against vaccines, but our reasoning was if she has unknown, multiple allergies—or something worse, like an autoimmune disease—we shouldn’t be stressing her system before knowing the true situation. I left that appointment as soon as I could and hoped never to see that lady again. It took me several months to get over the trauma and move forward, switching all the children to a different practitioner.

But back to April. We made an appointment with the gastroenterologist, and he was impressed with how healthy Grace was. He said, “That looks like classic allergic colitis; go off dairy; she should outgrow the problem at the age of a year or so.” He then explained what you need to do in the case of a milk protein allergy: eliminate all milk protein everywhere, which includes many things you’d never think of. Did you know that “natural flavors” on an ingredient label can hide milk proteins?

We also saw an allergist, who tested for a few things, but they all came back negative. Both the allergist and the gastroenterologist said that gastrointestinal allergies are not the same as the kind that provoke an anaphylactic reaction, so the testing doesn't really tell us anything useful. I had some online conversations with the gastroenterologist over the course of the summer as eliminating milk protein didn't solve the bloody stools problem. It did help with her eczema, and it did reduce the bloody stools some, but there was still something else going on.

So we tried going off beef and all other cow products; we tried going off soy protein; we tried eliminating many other things, but there was still sometimes blood in the stool.

At her first birthday, we tried giving dairy again, because the gastroenterologist thought she should have outgrown a milk protein allergy—most kids do. But that was a fail. Also, it seemed like peanuts triggered a more severe bleed, so we took peanuts out of my diet—and hers, as she was now eating regular food as well as nursing.

I had also noticed that it took Grace a long time to get over a cold. Whenever a normal cold would go through the family, it would take her three weeks to get over it. I mentioned this to the gastroenterologist on the online portal, and was told, “It's common for kids to get lots of colds; she'll be fine.” So at that point we continued to try to narrow down her problem foods, and waited for her to grow out of the condition.


At her next regular check-up, I brought up all Grace’s random symptoms that by themselves did not cause the doctors’ concern. It just seemed to me that, when put all together, it might indicate that something more serious was wrong, like an autoimmune problem.


We were then referred to a rheumatologist, but stalled at the point of getting an appointment, as the only pediatric rheumatologist in the state was not taking new patients. And the next two closest general rheumatologists were also not taking new patients.


So the next stop was an otolaryngologist (ENT), because Grace’s breathing was loud and her tonsils were very swollen. She was a great snorer and would have apnea-like episodes. The ENT said, “Those tonsils are huge; you know it's affecting her breathing. We should get those out.” An x-ray confirmed that her adenoids were also really swollen. I expressed my concern that this might be an autoimmune problem, and said that I hesitated to treat the symptom and miss the underlying cause. But he said those were “very rare.” I thought, “Well, what if she’s one of those rare kids?”


I was fed up with regular doctors at that point, and decided to see someone who is both an MD and a naturopath, and had been very helpful to a friend of ours. She ordered some blood tests, and when the results came in, she said, “Oh yes, her white blood cells are high (WBC); this is concerning. Her iron and some other measures are a bit low as well. She’s clearly fighting something. Let's put her on some anti-microbials and some immune-boosting nutrients and see if that helps.” She did some other allergy testing, which we knew was controversial—the medical community basically says it's no good, and the natural community is divided on its efficacy. That testing suggested still more dietary restrictions, so we decided to try both those and the supplements for a month. The doctor also offered to do stool testing to check for parasites, but we thought to try the diet first.


When her WBC came back high, leukemia came to mind, and we tried to assuage our fears. When Jon mentioned that growth would be hindered, I pointed out that she hadn’t been growing very much in the last year or so. I finally looked up her weight and height and discovered that she was in the 1st percentile for height and 7th for weight. This is so much smaller than our other babies, and though we didn’t have much data for her because of missing well child visits, it did seem like there had been a growth slow down at some point.


Soon after starting the restricted diet, I found out that I was pregnant. Grace seemed to react to my prenatal and iron supplements, so I decided to go ahead and wean her so that I could eat anything and thus take care of the baby's nutrients. I made a two-week goal so that it would be quick but not too quick. That was successful, though quite the emotional energy drain.


Repeat blood tests a month after the first showed Grace’s WBC improved (down by about half) but still high; other results were about the same or slightly improved. The naturopathic doctor said she wanted a hematological-oncologist to check out the blood-count numbers. In the middle of dealing with insurance to find one, Jon spoke to a pediatrician online who suggested we go back to the gastroenterologist. So we did. Because she was still having blood in her stools, he scheduled an endoscopy and a sigmoidoscopy and took a stool sample. When her stool sample came back with very high proteins, he changed the sigmoidoscopy to a full colonoscopy.


Colonoscopy prep is no fun even if you understand what’s going on, so that was a hard time, but she did better than I expected. The doctor said that the upper GI tract looked normal, but her colon was full of swollen lymph nodes. Did you know there are lymph nodes in the colon? We saw the images—it looked like a ball pit with tiny pink balls. He also took some biopsies and said the pathology results should be back in a week.


In the meantime, he and the anesthesiologist strongly urged us to get Grace’s tonsils out as soon as possible. She gave the anesthesiologist some scares when her swollen tonsils stopped her breathing a few times during the colonoscopy, we assume similar to what happened when she is sleeping. They scheduled the tonsillectomy for the Monday after the colonoscopy follow-up. (Then it got rescheduled for Wednesday.)


Grace had some bleeding and some black stools a little less than a week after the colonoscopy. Jon noticed a hard place in her belly, and that she was looking pale, so the doctor changed the planned video follow-up to an in-person visit.


Wednesday, November 29th, 2023, the day of that follow-up appointment, was the day our lives were upended.  (click next below to continue reading)


Posted by Heather Daley on January 8, 2024, 2:33 pm | Read 121 times | Comments (0)
Category Grace: [first] [next] [newest]

We were intentionally not posting online to allow for some in-person notifications, but we are happy to now announce that we are expecting a baby in late May!


There are various people rooting for a girl to make the statistics and/or pattern more "fair", but we don't know for now and will be thrilled either way. 

Posted by Jon Daley on December 14, 2023, 3:37 pm | Read 166 times | Comments (0)
Category Pregnancy: [first] [previous]

We haven't been blogging much, just living life and having fun together.


But, it is sort of sad that Grace didn't even have a category for her until today.


We are working on more content and to make a central place for people to get information so we don't have to re-type it all the time to each person who asks.


But, I'll at least post some cute pictures for now.

New knitted hat received from Justine (and she normally doesn't like hats...)


All tuckered out


Posted by Jon Daley on December 14, 2023, 3:29 pm | Read 199 times | Comments (1)
Category Grace: [next] [newest]

I switched to Capital One after being with Citibank for years (decades, actually).  Citibank started a poor security practice of sending you a text message that says "never share this with anyone", and then they ask you to repeat that code over the phone (even after authenticating me with security word, address and phone number verification).

We had stuck with Citibank mainly because they have Virtual Account numbers, which I don't understand why all companies don't do that - it makes things so much more secure - I can confidently use insecure means of communication, like email for one-time use credit card numbers.  And we love that feature, but Capital One now has it as well, and arguably, their system is even better - you need to download a browser extension, but it will auto-detect I am on a shopping page and pop-up a prompt to generate a new number and it pastes the number and CVV code into the fields automatically.  They also have very long running expriation dates (Citibank is limited to 1 year) which means I can use unique credit card numbers with services that I don't want to have to update every year, like Comcast and USPS, etc.

Capital One has a referral program, where I'll get $150 if you use this link.  Thanks!

Posted by Jon Daley on January 12, 2022, 11:30 am | Read 2429 times | Comments (5)
Category Reviews: [first] [previous]

Since I'm on a roll of typing out the insulation we've used, I figured I might as well post about our heating systems too.

We have five different heating sources for our home, and someday we'll get a sixth...


Posted by Jon Daley on October 30, 2020, 10:46 am | Read 2347 times | Comments (0)
Category General: [first] [previous] Reviews: [first] [previous] [newest]

Someone just asked for advice on Facebook, and I figured I should save it here so I don't need to type it again when someone asks later.


We've had just about every kind of insulation in our house. So, more than you asked for, but hopefully useful. Also, if you don't know about it, you should go to and have Eversource pay for 50% of your costs - a great program, we paid $3500 and save ~$1000 a year in fuel, plus the house feels warmer. Air sealing is the most important (one reason spray foams are better; the R value of cellulose and fiberglass goes to something around 1 or 2 if there is air movement)


Posted by Jon Daley on October 29, 2020, 10:40 am | Read 2339 times | Comments (0)
Category General: [first] [previous] [newest] Reviews: [first] [previous] [next] [newest]
Jon has implemented a system for me where I can send an email to post on the blog. I will be back-dating posts so they flow with the timeline of our lives. It will take a while, but I will eat it in small bites!
Posted by Heather Daley on June 4, 2020, 11:38 am | Read 5452 times | Comments (1)
Category General: [first] [previous] [next] [newest]

In honor of the end of World War I one hundred years ago today, I post a picture of Joy hugging the tree that was planted in memory of her great-great-granduncle Harry Faulk.

See my mom's Armistice Day post for a few more details of my family's involvment in the war.

Joy hugs the tree planted in memory of Harry Faulk.

Posted by Heather Daley on November 11, 2018, 2:32 pm | Read 5323 times | Comments (1)
Category General: [first] [previous] [next] [newest] Joy: [first] [previous]

There are, of course, many examples of why Jon is a great Dad, but this is a particular one I'd like to record.

One evening, Jon and I were resting together in our bed.  Suddenly, from the other room, we heard a panicked cry, "Someone help me!!  AAA-AAA-AA-AAAAA!!"  Jon jumped up and ran to the rescue.  Jeremiah was clinging to the top molding of a doorway.  He had climbed up the doorway to the top and then his feet slipped and he couldn't get his foot-grip back again.

But it didn't end there.  Unlike many parents, Jon did not reprimand Jeremiah.  Instead, he helped him "get back on the horse."  Jon showed him how low his feet actually had been and reminded him how he often jumps from that high in other places.  So after a few tries, Jeremiah discovered that Daddy was right, and now he happily climbs up doorways without fear and sometimes even jumps down from the top on purpose!

Posted by Heather Daley on October 27, 2018, 11:43 am | Read 3906 times | Comments (1)
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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!
Posted by Heather Daley on April 30, 2017, 12:00 am | Read 1556 times | Comments (0)
Category Noah: [first] [previous] Faith: [first] [previous] Joy: [first] [previous] [newest] Jeremiah: [first] [previous] [newest] Nathaniel: [first] [previous]
I am posting my backlog of pocket notes. Sometimes details are sparse.

2/1 - Jonathan, "Even Einstein didn't have a triple-digit IQ." Noah, "Isn't that the guy with screws in his ears?" Jonathan, "No, that's Frankenstein."

Noah is losing teeth all the time, I have trouble keeping track of them all.

Dropping elbow on frozen shredded cheese. [This is a karate move, and it really works to break up the frozen chunks.]

2/7 - Faith started to whistle!

2/12 - Nathaniel: "Say-too" = thank you

2/16 - Nathaniel, "Way-ma" = Grandma

2/16 - How old are you, Nathaniel? [holding up one index finger on each hand] "Doo!"

2/18 - JPD doing joyful noise "p-p-p, t-t-t" with Nathaniel

2/25 - Joy, "It's a happy day every day at Grandma's house!"

3/2 - 10:30pm - Noah stands up out of bed, looks around confusedly, "I forgot how to do it."
Me, "Do what?"
Noah, "Go to the moon."

3/5 - Jeremiah knows almost the whole alphabet.

3/5 - Jeremiah, to Nathaniel, "Good morning, sweet boy!"

3/7 - Joy lost her second tooth. Lower right 1st incisor.

3/26 - JPD write first name all by self

3/27 - JPD, "Mommy, that says 'NO'".
"How do you know?"
"I seed the 'O', and I seed the 'N', so I knew it said 'NO'."
[flips switch]
"And this says 'YES'."
Posted by Heather Daley on March 31, 2017, 12:00 am | Read 2839 times | Comments (2)
Category Jonathan: [first] [previous] Noah: [first] [previous] [newest] Faith: [first] [previous] [newest] Joy: [first] [previous] [next] [newest] Jeremiah: [first] [previous] [next] [newest] Nathaniel: [first] [previous] [newest]
I am posting my backlog of pocket notes. Sometimes details are sparse.

1/4 - The whole family plays Cousin Memory. Nathaniel repeats incessantly, "I turn! I turn!"

January - Nathaniel knows where all the dishes go. He loves helping to unload the dishwasher and he is good at sorting silverware.

1/9 - Nathaniel, "Self!" (as in, "I want to do it myself!")

1/10 - Jeremiah saw a picture of a galaxy on the computer and exclaimed, "Look! The Milk Bottle Way!"

1/13 - Noah, while washing dishes, about the dish soap, "Mom, I think this is running out. It DEFINITELY didn't last Seven Generations."

1/15 - Jeremiah, "i'm not a little boy! I'm a big boy! But my SIZE is little."

1/18 - Nathaniel now jumps with both feet.

1/22 - Joy read hymn 366 (I Live) with only minimal help and is so proud and happy, she found it again in the hymnal at home and she is singing it
over and over again.

January - Nathaniel, learning to say people's names. "Doah" = Noah; "Djon" = Jonathan; "Sase" = Faith; 1/26 - "Sho-shuh" = Joseph; 1/27 - "Miah" = Jeremiah; 1/28 - "Joy", with the j sounding like the j in Dijon.

1/27 - Nathaniel pinworms. Only treated him.

Discussion of "thet" vs. "that" [added 6/6/2020: This is an intermittent discussion that is ongoing. Apparently, I say it sloppily, so that's how Jonathan learned, and now several others say it that way also.]
Posted by Heather Daley on January 31, 2017, 12:00 am | Read 2399 times | Comments (0)
Category General: [first] [previous] [next] [newest] Jonathan: [first] [previous] [newest] Noah: [first] [previous] [next] [newest] Joy: [first] [previous] [next] [newest] Jeremiah: [first] [previous] [next] [newest] Nathaniel: [first] [previous] [next] [newest]
I am posting my backlog of pocket notes. Sometimes details are sparse.

11/10 - Nathaniel was a messenger to me from Joy: "mum" [come], held my hand to bring me to her.

11/22 - Jeremiah singing while playing, "I love you God, 'cause you make me happy..."

12/4 - Joy pinworms

~12/10 - Joy can whistle!

12/10 - Nathaniel, at the firefighter kids' Christmas party, "More cheese ball!"

12/11 - Nathaniel put on both his mittens by himself.

12/13 - Nathaniel's first haircut. He stood still the whole time - the easiest first haircut I've ever done!

12/14 - Noah, about BIG Numbers, "It's so boring, but it's so NOT boring."

12/20 - Joy lost her first tooth! Lower left. Popped out when she was trying to unscrew the toothpaste cap with her teeth...

12/20 - A spoonerism from a tired Mommy tongue, but Noah liked it and wanted me to write it down, "definary dictionation"

12/27 - We had been getting lots of packages in anticipation of Christmas. The doorbell rings. Nathaniel exclaims, "Box!"

12/31 - Jeremiah, "Raindolph is not real, but Santa is real." He knows this because he actually sat on Santa's lap at the fire station.
Posted by Heather Daley on December 31, 2016, 12:00 am | Read 3018 times | Comments (0)
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