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Powered by LifeTypeAn ENT, a radiologist and an oncologist walk into a bar...
Oh, maybe not, but they at least had a discussion about Grace while looking over the MRI and CT scan together and the conclusion is that it isn't a plexiform fibroma at all! Which is what Heather has had the faith to pray for all along! She has had a number of positive signs from God this week and so she is greatly encouraged. The lunar eclipse was pretty neat to watch, and she was also blessed with a meteor just after as she was going to bed.
I haven't talked to the oncologist/NF1 specialist who was the one to diagnose it in the first place to hear why she changed her mind, but collectively, they don't think what is going is consistent with an NF1 fibroma, so they are looking for another cause.
Grace now has surgery scheduled for next Thursday, the 27th, to check out the potential fluid behind her ear (last time I talked to the ENT, he was thinking it might not be fluid, but some spongy tissue), possibly install a tube in her ear drum to let the fluid out, if it is there but getting blocked from going down her eustachian tube, and do a biopsy to grab near the potential NF1 fibroma to see what it is.
She will be sedated for the procedure. They haven't scheduled the time yet, but it will likely be at 6:30AM or so.
Today is the day, one year ago, that Grace was allowed to exit the hallway doors of 6 West and live in a place other than a hospital room! They played Raining Tacos for her exit parade, so my thought is to celebrate each year with tacos for dinner. (And maybe a shamrock shake thrown in.)
Although Alexa will play the correct song if you only ask, "play tacos," Grace can now ask for "raining tacos."
I used to tear up every time I heard it, but we do hear it a lot now. (:
It is interesting to me how fast these anniversary markers are coming. The days between admission and discharge last year were so very long and hard. This year, January 30 to now has sped by.
The results from Friday's CT scan and ENT appointments need to be discussed among her doctors. The ENT doesn't think the hearing loss is coming from the fibroma, because it is so small. But there may be bone erosion, from a cause yet to be determined (chemo?)
And since now more than one person misread my last post, I will clarify that Grace's bone marrow aspirate is scheduled for next 17th, April, not today.
Selfie
She made this into a double stroller herself.
And I'll end with a quote:
"Dis little toe wenta market. Dis little toe 'tay home. Dis toe, what? [ate roast beef] Dis toe? [had none] And dis little toe went aaaaaaallllllll a way to Papa's house!"
Grace has her ear CT scan, and audiology and ENT appointments this Friday, March 14.
April 17 is the scheduled date for her next bone marrow aspirate; that will be at Dartmouth this time.
Fun quote from yesterday, "You aren't Joy any more. Your middle name is 'Mommy' now."
I get daily emails from GodTube.com, and they are often worth reading. Today's devotional was good.
While I don't ever feel (well, not since just after the bone marrow transplant) that "life is over", it is sometimes hard to think about what Grace's life will be like, and the hard decisions we, and eventually she, will have to make can be overwhelming.
As one friend said the other day, (paraphrasing) "I thought things were settling down, but I hadn't realized the full extent of what was going on. I will re-add Grace to my prayer list."
Grace had several appointments at Dartmouth today: audiology, ENT, oncology/nf1, lab draw
This is my memory's summary of Jon's report to me: A lot of time for not a lot of progress. Education/information, but no decisions. The ENT was not experienced, so they want her to see the adult ENT because that person knows more. They also want to do a CT scan before deciding on treatment plans. They think from the MRI that it is a very small fibroma, but they want to check. Turns out the medicine for reducing the fibromas has terrible side effects and you have to take it for the rest of your life. So we want to delay that as much as we can, hopefully avoid it forever. They want to know if it is affecting how her bones are growing. If not, they will probably do nothing. If so, Jon is wondering if surgery is better, because it's so near the surface and so small. But he didn't understand why she didn't get the CT scan today, because it's just delaying treatment decisions. I say it's to give our prayers more time to work to just reduce it without medical intervention. Her hearing loss was less than in November. The audiologist wants to give her a hearing aid, which might be fine. Her eardrum is funny-shaped.
Here are a couple of pictures from our extended family vacation to Washington, D.C.
At the National Children's Museum - flying like Noah!
Smithsonian American History Museum - future president of the United States??? She sure thought this speech-on-camera simulator was fun!
As previously mentioned, Heather noticed a spot in Grace's ear last summer, and when the NF1 doctors heard about it, they were concerned that it might be a plexiform neurofibroma, and so scheduled an MRI for today to take a closer look. While it has shrunk on the surface, it is still there inside her ear canal, and they officially diagnosed it today. It is a benign tumor, like most NF1 tumors that she is at risk for. Typically, they will grow and cause problems as they bump into other things, though sometimes they stop growing and might not need anything done, and really rarely, especially in children, can shrink and/or disappear.
The NF1 team at Dartmouth Hospital doesn't work on Wednesdays, but the onocology team didn't want to leave us hanging, and so called with the preliminary results this afternoon. The good news is that it doesn't appear to be impacting her brain at all.
The radiologist recommends a CT scan to see how much the tumor is impacting a bone in her middle ear. We already have an appointment with audiology and otolaryngology on March 4th, and the oncologists are going to try to get the NF1 doctors there as well, so they can have a group discussion about what to do next. The oncologist's opinion was that surgery wouldn't be a good option, based on where it is. So, I think the other option is "medicine", which I don't think she specified whether it is an oral chemo (which I know is the solution if she gets a tumor on her retina), or some other sort of medicine. In any case, there isn't anything particular urgent about it, but we'll hear more next week and then I assume some really good answers in March.
The oncologist confirmed that Grace is "one in a million", saying that she had never heard of a three year old undergoing an MRI without sedation (which was my request), and she did a terrific job, she winced once at a loud noise, and then fell asleep to soothing sounds of the MRI. (and that is sarcasm, if you couldn't tell. And MRIs have gotten signficantly louder than when I was involved in the Cognitive Center for Brain Research at Carnegie Mellon. I think of the "chunk chunk" sound as a normal MRI, but it is apparently now common to have really loud motor/whining/horn sounds. She twitched a little as she fell asleep, but her head had some padding around it to hold it steady, and I was told the pictures came out great.
I asked to see the pictures at the end, and Grace and I enjoyed looking at her eyeballs. She also showed us her ears, though she scrolled by quickly (though I had a suspicion that her right side looked different from her left (which is possibly why she scrolled so fast), but Grace thought her eyes looked pretty interesting.
They gave her a stuffed unicorn to keep her company in the MRI, and she named it Candy Corn. And she insists that it isn't a boy or girl, but just "Candy Corn", which has caused much debate among the kids about whether she understands the question, or whether unicorns have a different set of genders...
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!
From all outward appearances, Grace has been doing very well. She's eating well and gaining weight. All her blood numbers look good. She only has one more week of her last medicine.
However, I noticed a dark spot in her right ear and wondered if it could be connected to her hearing loss.
When Jon took her in last week, they confirmed that the spot is an indication of the possibility of a neurofibroma. Grace is scheduled for a brain MRI on February 12.
Please pray that God will heal whatever is there so that the MRI will show everything as normal. Please also pray that she will be able to handle the procedure without having to be sedated. And please pray that we will trust God and not be anxious.
Grace loves her bath time, requesting a "shower" nearly every day. She plays with a set of graduated cylinders and asks me how many "hillometers" she has filled.
Each night at bedtime, she asks me to sing Amazing Grace, and then Twinkle Little Star, Twinkle Teeny Tiny Star, and Twinkle Big Star.
She can jump with two feet and loves going bouncing with her siblings.
Nathaniel and Jeremiah were joking around. Grace said, "Dat a knee slapper!"
Grace has been enjoying walking in the snow and climbing on the plowed parts.
On Wednesday, December 11, 2024, we took her NG tube out on purpose! She had been eating and drinking well, and we trialed no formula for six days. She still gained 0.2 pounds. Now she says, "Me have zero tubes."
And she got to fly with Noah on Thursday.
Next Thursday, she has a regular hem/onc checkup at Dartmouth and an eye exam.
Because he likes to compete with Brandon Sanderson, SD Smith is launching a new Green Ember book today. Our family loves the Green Ember series maybe even more than the Stormlight Archive.
I've mentioned before that the soldiers' oath has special significance to us now that Faith has literally given her blood for Grace and that SD Smith has supported our family with time, prayer, and gifts.
So... Will we hear about the Pilgrim in this first book of Lost Tales? We hope to find out soon!
Sorry we left you hanging about Grace's recent appointments. Here are some things to be thankful for about Grace. She did really well during her audiology appointment. It took a long time, but she followed all the directions and was cooperative as usual. She does still have some hearing loss in the right ear. It's the kind of loss that's associated with fluid or congestion, which is why the Boston audiologist wasn't concerned because she had just gotten over COVID then (in January.) This audiologist also wasn't concerned because to her that means temporary loss. But I pushed her because Grace has not had any congestion or a cold in a while. So she referred us to an ENT to check out the ear. We have not made that appointment yet.
The next day, Jon took her back up to Dartmouth for her followup leg xray. The orthopedist was very happy with the healing. Jon was concerned because he could see a buildup of bone in the broken spot, but the doctor said that will go away with time. She also said that you could see the growth "rings" (like a tree!) and if you measured precisely, would be able to tell the dates of when she stopped growing. She was assuming that would be chemo dates, but we know she stopped/slowed her growth much earlier because of the leukemia. We are hoping she will do some catch up growing, but three years old is when the growth curve starts leveling off. The orthopedist figured Grace would also level off and just be short her whole life. So we will see.
Jon also talked to the nutritionist that day and got some guidelines for moving towards getting the NG tube out. Grace had her last dose of cyclosporine last Tuesday! So now the only thing she gets through the NG tube is formula, and some water to flush the tube when the bottle is finished. We reduced her feeds to one bottle a day a few days ago. We aren't counting the calories she is consuming by mouth, but it looks good so far. And the nutritionist said that as long as Grace is not below 11kg by February, she'll be happy. So we have a couple of kilograms of leeway as we reduce her formula and get her to eat all by mouth.
Grace easily (with gentle reminders) drinks her 600mL of liquids in the day. So we really have only been giving water in her tube to flush the formula. She tolerates a nice high rate from her pump, so her one bottle is done in just under two hours. So that means she is backpack-free for most of the day! Soon she will be tube-free, and that will be quite the day of rejoicing! We are anticipating that to happen before Christmas.
And we're trialing introducing dairy again. She is now having baked in dairy - brownies, rolls, that kind of thing.
She still has one more medicine to take, an antibiotic to replace one that she used to get in her central line once a month. This one is oral at my insistence. I decided that we would not even give her the option of putting it in the tube. It looks exactly like bright lemon-yellow acrylic paint, texture and all. She says it "tastes bad" but she swallows it like a champ every morning, quickly followed by some water, almond milk, and whatever breakfast food she's eating. (The first week or so, I gave her a candy corn chaser, but now she's satisfied with whatever's in front of her.)
All her bone marrow results came back good - her marrow and blood are still all Faith's, praise the Lord! And we have not seen any sign of GVHD even as her medicines are off.
As the one-year anniversary of her diagnosis approaches, I am doing a lot of remembering. We have so much to be thankful for. We had Daley Thanksgiving on Saturday, and we all remembered the previous year's event when Grace was only allowed her colonoscopy cleanout prep and clear liquids while the rest of us feasted. During church yesterday I was thinking how at this time last year, after her colonoscopy, Grace was pale, anemic, tired, with a distended belly and concerning output. In my memory, I can fast forward to now. (The day in and day out of living the last year was anything but fast. But it really does work to put one foot in front of the other and eventually get somewhere.) Now Grace is so vivacious, happy, pain-free and VICTORIOUS! I am so thankful for the healing transformation of this precious little girl. I'm thankful again and again for God's grace to sustain us and for God's people to be his hands and mouths to support us in the whelming flood.
Swimming!!
Shopping without wearing a mask. She wanted to hug the bananas. (:
Look at that hair!
Thinking of how God has healed the physical as we step through life one day at a time, we also need to persevere in the emotional/mental healing. I do see improvements in our family and individual wellbeing, but there is still more healing needed. There are fewer bad days, but they do still come. We are going to a friend's condo in the White Mountains for a family retreat this week. Please pray that it will be a blessing to our relationships.
On Christ the solid Rock we stand!
May God bless you all this week and I hope you can find plenty to be thankful for, whether your country celebrates it officially or not.
Last weekend, Heather took all of the girls on a retreat and had a lot of fun together. Those of us at home had a work day at Grammy's and another friend's house and then had a really great day at home with a friend from church. Elbereth, Jonathan's snake, was out and various people were holding her and then she was resting on the olympic rings in the kids' bedroom. Apparently, when we dispersed, no one remembered about Elbereth and so at some point, she must have gotten tired of hanging on and dropped to the floor (probably a four foot drop), and then looked for a nice dark place to hide, which was in Nathaniel's bed! We didn't notice until today, two days later, because she often hides in her wood shavings, so no one thought much of not seeing her, but Jonathan went to clean the cage and found she was gone.
Faith found Elbereth at the foot of Nathaniel's bed, and Jonathan discovered that she had wedged herself in between the bunk bed and the wall and was unable to go further forward, and snakes aren't capable of going backwards, so she was completely stuck.
We used a crowbar to move the bunk bed (6 beds all connected to each other) a little bit so Jonathan could extract her. She appears to be fine and none the worse for wear.
The appointment with the NF1 doctor went well. One of her oncology doctors was also there, the one who works closely in the NF1 world. Jon didn't remember meeting the NF1 doctor, but it was right at the very beginning, during Grace's first hospital stay, when she was diagnosed. So, much to be thankful for from that visit. They are sure that her fracture is from steriod weakening and not NF1. The kind of bone issues that NF1 causes is not evident in her, and it would be by now. Several other NF1 symptoms are also ruled out for the same reason.
But there is still the possibility of developing brain tumors. This is why she is scheduled for eye exams every six months for the rest of her life. They are working on a trial of oral chemo that looks promising. Because there is no sign of brain/retinal tumor in Grace now, that study will be finished before she would even need it. And we pray that she never will! I think they said she'll get a brain scan every year, but they did not do one this time. She had an eye exam in June and will have one next month. And they asked about her cognitive development. The tumors really affect that, so we are reassured by her development there. Jon asked me to look up milestones for three-year-olds and the only things she is behind in are some gross motor skills like jumping/hopping and riding a tricycle. (She tried riding a tricycle the other day, and her legs did not reach the pedals!) I had already planned on taking her to the playground more often, but that now has to wait while her leg finishes helaing. That is on the mend, she does not limp much at all anymore. She still has some flareups occasionally, but the curve is dampening.
Jon and Grace are off to Boston for her bone marrow aspirate. He just spent all day yesterday at the polls, literally, from 6:30am-11pm. And they had to leave at 5:45 this morning. Prayers for alertness while driving. Bless her marrow that it's 100% Faith's. Bless the procedure and anesthesia. Bless our little Amazing Grapey Grace.
Fun quotes from the last weeks:
9/7/24 - Nothing like older brothers to help you develop cognition. When she was in an "answer everything with 'no'" mood: "Grace, are you dumb?" "No" "Are you not dumb?" "Not dumb."
9/11/24 - "Mommy, all done eat my eggs. Please wash it, my fork."
9/11/24 - "Hope 'wake now. Not sleeping."
10/26/24 - Nathaniel and I were talking about when Grace can shower and bathe now that her central line is out. Grace then exclaimed, "Swim! Me swim! Maggie P! You come. Hope come."
Monday, 11/4/24: The kids were doing a survey for fun. "What's your first name?" "Grace" "What's your middle initial?" [they helped her say 'Victoria' and that it starts with V] "What's your full name?" "Amazing Grapey Grace!!"
Line removal surgery was successful. She did great for the IV.
She came out of anesthesia quickly and they were home by 4:30. It is strange to her to have her line out. But next week she'll be able to have her first bath in a year! She is excited about that.
After she got home, Grace opened her birthday joy jar.
