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Powered by LifeTypeGrace 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:
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
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.
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.
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.
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.
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.
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!"
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.
I said that I've been assuming a positive JAK3 test is a pre-cursor to the chimerism test dropping to a "mixed chimerism", and he is always very careful with his words, and said that it isn't a harbinger or a pre-cursor, but it is a pre-disposition.
We will find out all of the results in a week or so.
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.
The scriptures that we are clinging to and praying through:
"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." - 2 Corinthians 12:9
"It is of the LORD's mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness." - Lamentations 3:22-23
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. So that is scheduled for June 12. We aren't clear as to why no one noticed that before. We think the Dartmouth doctors thought it was expected, and I guess the Boston doctors didn't see the results? It does make us wonder if we need to be paying more attention - we try to read all of the medical records, but don't always read through everything, and sometimes it gets pretty technical.
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.
Our week has been somewhat full, with a few extra church services, including Maundy Thursday with handbells, which I didn't find out until the end of the service that it wasn't recorded, and I meant to record it during rehearsal, but I forgot. But, it went well, despite Jeremiah being sick, but fortunately, Faith's part was pretty easy, so she was able to take over his bells as well as her own (so, I think that means she had more than an octave of the highest bells).
We also had a combined service with the Methodist Church and Smith Church today. They had a "tables of the cross" type setup to explore after the service, and Nathaniel in particular stayed for quite a while.