Lift Up Your Hearts!

It's been a long time since I've posted an update on Grace, which is of course very encouraging! But here's something Jon posted recently that demonstrate that "no news is good news" hides a life that is far from normal, even though you'd never guess it from a casual encounter. There's a lot they don't tell you when you begin a complex medical journey—or maybe they do, but it's just too overwhelming to be taken in. One cannot pour highly toxic substances into a growing body (or any body) and expect them to do no harm. And sometimes it's the (relatively) little things that have a surprisingly strong emotional impact; hearing that Grace is apparently condemned to flu and COVID shots for the rest of her life hit me very hard, though if pressed I will admit that if I could eliminate just one of the actual and potential side effects, that would be far down on my list.

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.
• 3 visits to dermatology - this has gone really well, and it would have been good to meet with a dermatologist earlier, as the doctor changed out the skin meds she was on, and (perhaps in combination with figuring out thyroid dosages and lowering the Koselugo), her skin is 100% better, though as we enter into the drier winter season she'll need to use her lotions more often than she needed to over the summer.
• 1 visit to our dentist - nothing to report. Though oncology told us yesterday that one of the chemos she had causes long term teeth problems, and before pulling any teeth or major dental work, they need to check to make sure that the adult tooth exists and is in the right place, and is shaped properly, etc.
• 3 visits to endocrinology - mostly just to lay eyes on her; the doctor has been working on getting the dosage to get her thyroid levels within normal limits, and that has been a success. Oncology just said to keep an eye on it as she gains weight, as the dosages will need to change.
• 1 visit to opthamology - everything looking pretty good, though they have some concerns about "thickening" around one of her retinas, but is is good for now.
• 1 visit to neurology - we like to do combination visits with neurology and oncology to make sure we are covering the bases with NF1 and JMML.
• 2 visits to oncology - this is Dr. Santacruz at Dartmouth, who we love and who we basically consider her primary care provider, though after the conversation yesterday with Boston, we need to have some conversations with all of her providers, as it is depending a little too much on each individual to be thinking about the whole picture, and I'm not sure specialists are that good at thinking that way, and while I'm comfortable managing much of her care, it is easy for us to not connect the dots across everything.
• 1 visit to audiology - hearing is still good (even with the lower dose of the anti-tumor med, so that is good news!). There is always a question about one of the tests (air pressure/response), and from my view point, the test is greatly skewed by how the sensor is physically held into her ear, so I'm not entirely sure we are getting consistent tests to compare to each time, but the regular actual hearing tests are good, and the frequency responses are mostly normal.
• 1 visit to cardiology - this was just yesterday, so I haven't talked to anyone yet, but Heather said the report looked good. And the valves look good to my inexperienced eyes. I am going to ask someone to double check they aren't anything, as I don't remember those being there before. Gemini tells me bright spots can appear due to reflections of the ultrasound waves, so perhaps it isn't anything.
• 1 visit to pulmonology - also yesterday, and because she is considered too young for a spiromometer test, they just do a walking test while monitoring SpO2 levels, and she did fine on that. Prior to the appointment, I was wondering if they were going to have her do the spiromometer, so we practiced some in the car, and the oncologist was interested to try, partly just to get her to understand the test (everyone fails the first time they take it - I failed and the tech had to show me how to do it), but said typically they don't use that test until they are 6 or 7 years old.
• 2 visits to radiology: 1 "regular" MRI on her head/ears/eyes. Another one scheduled for November. She also got a bone density scan yesterday for the first time - the whole skeletal picture is pretty cool, so hopefully we'll get to see it in more detail than just me watching over the tech's shoulder. People with NF1 are susceptible to weak bones, etc. When Grace fractured her leg last year, they were concerned about whether it was due to NF1, but due to how it broke, decided it was due to being on steroids too long, so were less concerned about anything going forward, but she'll get a scan every year or two.
• Countless blood draws, which fortunately she doesn't mind at all.

Whew! 

Most doctors are starting to talk about longer time spans between the visits, so that will be nice to have those slow down a little. We did meet the "long term survivorship" medical team yesterday; when Grace heard about this, she said, "Oh good, more doctors!"

Nathaniel and Grace made brownies which we delivered to Boston Children's Hospital 6th West, where she stayed during the bone marrow treatment, and they were all happy to see her, both the nurses that we knew, who were especially happy, but even some other nurses thanked us for coming, that everyone likes to see success stories.

Boston oncology does want her to get a bone marrow aspirate, not entirely for chimerism, which they did via a blood test yesterday, but there are also some other things that are important to check that I didn't really understand.

And as I referenced above, there were a number of times yesterday that the oncology team said things like, "well, her <insert other specialist> will be keeping an eye on that, so we will defer to them..." Because of Grace's NF1, she gets seen more than the average JMML patient, and so the onocology team isn't as used to having so many other reports and so many other specialists watching over her. So, I just need to check to make sure that the other specialists are, in fact, actually thinking about the total picture and keeping an eye for something that might be pointing to a larger issue. Case in point, I hadn't realized that GVHD was still a concern at this point, and I think acute GVHD isn't likely, but chronic GVHD is more of a possibility, thought we've not seen anything so far that is particularly concerning. Her Boston oncology team was surprised to hear about her lack of hair growth and hair color changes, but now that she is through it, it appears it wasn't GVHD related, but I'm not sure anyone was actually thinking about that previously.

We also got some conflicting information yesterday compared to what we were told previously about the purpose of removing and freezing one of her ovaries, so we need to check into that. The nurse practitioner yesterday said that her ovary would definitely not be used for hormone therapy during puberty, but only for potential fertility later. I now know more about NF1 than I did, mostly due to being on Facebook groups with other patients and parents and watching them go through NF1 as an adult, or learning that they have NF1 after passing it onto their children, though I've attended some medical provider trainings on NF1 as well. My counsel to Grace would currently be to not have children, where previously I was thinking that would be okay, and we wanted her to be able to make that decision. The annual costs of freezing are going up, and we're now wondering if it is worth paying all that money each year if she won't eventually even use it. Apparently, hormone therapy/replacement for teenagers is reasonably well understood, so they have synthetic meds or whatever that can control and compensate for imbalances, so they are confident they wouldn't need/want her ovary for that. We need to ask some other providers about that, since if you recall, this journey started with bad information from a nurse practitioner who insisted she knew what was going on...

I know many of my readers still pray regularly and faithfully for Grace. Our gratitude is necessary but not sufficient. (If that last line is confusing to some of you, it's just me reverting to my math major roots. What I mean is, "Thank you so much!")

There hasn't been a lot of Grace news recently (for which we are thankful), but Heather just posted an update and a new prayer request. In short,

On Wednesday, 2/4, Grace will have a long MRI, for which she will be sedated. (She normally does not get sedated, as she is so good at holding perfectly still (she usually falls asleep) but this one is very detailed and thus of long duration, too much to ask of any four-year-old.) They will be looking specifically for any changes in the size of her ear tumor, and especially for what is going on around her eye that they couldn't see well in her most recent MRI. Here are three specific requests.

• That there be no eye tumor at all, of any size
• That her ear tumor will have shrunk
• That the news about the above will be such that they will be able to take a break from the NF1 medicine to give her skin a chance to heal. One of its side effects is a very itchy skin rash. As Heather wrote, "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. Her pain tolerance is still so high that she doesn't really realize that she's scratching herself to excess."

Thank you for your concern and your faithful prayers. Sunday, February 8 will mark the second anniversary of Grace's bone marrow transplant, and on that front she is looking very well indeed.

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!

Pictures here.

Thank you all for caring about our little one big four-year-old!

With cancer, you never know. With NF1, you never know. When doctors flood your body with toxic chemicals, then give you this drug to counteract that problem, and another drug to counteract the side effects of the first drug, and yet another to deal with problems caused by drug interactions ... you never know. You never know when a new wrinkle will appear.

In this case, this one is serious, but apparently manageable. They'll know more after Grace sees an endocrinologist next week. Here's the story, from their blog. Click on that link for some happy pictures, and the context of Grace's poignant exclamation: "Look, Mom! Like me, a long time ago."

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.

No news has generally been good news on the Grace front. There have been some minor challenges, but when we saw her this summer, she was as bright and happy and apparently carefree a grandchild as one could want—barring doctor's appointments and the extremely expensive, relatively unknown drug she's taking. (Cheerfully, as long as the pill is followed by a Tic Tac.)  I encourage you to visit Heather's Day +571 update for a few more details—and pictures!

So much of Grace's story is about waiting for news. This time, it was for the results of an all-day assessment at Dartmouth last Wednesday, including EKG, MRI, regular oncology checkup, ophthalmology and audiology. Short story: All great news!

Back story: From the beginning, Grace was compliant and helpful about wearing her hearing aid. But two or three weeks ago, she started to balk, saying that God was healing her ear so she didn't need it anymore. Anecdotal evidence indicated that her hearing had, indeed, improved, and you can see from the report below that the audiologist agreed. [For the one person reading this who knows what the numbers mean, they went from 38 to 80.] So instead of getting fitted for a permanent hearing aid as planned (to replace the rented one), they were told that if she doesn't want to wear one, she doesn't need to!

Grace could also teach us adults about how to deal with getting an MRI: It took her about 60 seconds after getting into the machine to fall asleep.

Here's the overall report, excerpted from Heather's post.

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. (:

Deo Gratias!

I know many have been waiting on tenterhooks for the results of Grace's recent testing, as have we. Sometimes good things come to he who waits.

The bottom line: The news is a bit confusing, but it's wonderful! Grace remains fully engrafted and has no evidence of JMML!

[Insert Doxology here.]

Here's the story, as Jon wrote it (except for a section in brackets that I added for what I hope is clarity, as there seems to have been a typo or cut-and-paste error). 

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, [it would have shown itself already, they] 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.

Our deepest gratitude to all of you who participated in the day of fasting and prayer, are praying regularly for Grace, and/or are supporting her family in so many other ways.

Grace's church has organized a day of fasting and prayer for Grace.  For anyone interested in being a part of it, here is the information from the Daleys' website:

It's wonderful to spend time with Grace in person and see what a bright, capable, and happy three-year-old she is! And apparently healthy, though the knowledge that appearances can be deceiving is always in the background. Her new medication appears to be proceeding with only minor side effects, though it's still too early to see any noticeable good effects. She takes her pills like a champ: not only has she learned to swallow them, but she does so without any help, not even a drink. (The single Tic Tac given afterwards is still an important part of the routine, however!) She is adjusting well to her cute multi-colored hearing aid.

However, the background concerns are poking into the foreground, after Jon (Jon, not the doctors!) noticed something strange in her last bone marrow aspirate results. The communication between Boston and Dartmouth is STILL horrendous. (Boston is where the bone marrow transplant was done, and where all those records are, despite them officially having handed her care off to Dartmouth.) As a friend who has had plenty of her own experience with childhood medical issues, wrote, "You want to trust that [the doctors are] doing everything, but the reality is that no one will pay attention to the details and care for her health as much as you."

The upshot is that the results showed evidence of something called the JAK3 mutation, which apparently is related to but not the same as the mutation that causes her NF1. Maybe; I'm not clear about that. But it's in the bone marrow and was supposed to have disappeared in the transplant along with everything else about her original marrow. So the urgent question is: Is this an error (they happen) or a sign that her old bone marrow is still lurking in her system? This coming Thursday the doctors will take another aspirate (with all that comes with it, including general anesthesia) to check the results. As Heather said, Please pray that Grace has no trace of her old marrow and for peace.

Below are more details taken from the Daleys' post.

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 [insert eye-roll emoji here] 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.

Please pray that Grace has no trace of her old marrow and for peace. We know a boy who had a relapse and had to go through the whole transplant process a second time and we really don't want to follow in his footsteps.

I'm letting the Cares Chorus be an earworm in my head.

Thank you, as always, for your love, your concern, and your prayers.

Grace's next appointment is May 6. In the meantime, she has started on the new medication, Koselugo, and has been doing really well. This is the first time she has had to swallow pills, so she spent quite a bit of time practicing with Tic Tacs while waiting for the medicine to arrive. (Swallow one, chew one.) The candies are slightly smaller than the real deal, but they at least taught the idea and technique of swallowing a pill without chewing it. They tried to get the pharmacist to make up practice pills of exactly the right size but without the drug, but he thought that was a crazy idea and refused their request. Considering that the suggestion was made by a friend of ours who is a speech therapist, and speech therapists know all about teaching people to swallow, I'm inclined to think that it was the pharmacist who was the crazy one here. No matter now—Grace has been swallowing the real pills for over a week, and only occasionally needs to try more than once to get it down.

She was able to begin the treatment because although on retest one kidney number was still a little concerning, the other was fine, and her kidney ultrasound was normal. So they're still pushing fluids, but there was no reason not to go ahead with the new drug.

So far Grace has experienced no side effects of the medication. it's very early yet, of course, but we'll take all the good news we can get for as long as we can get it!

We walk by faith, not by sight. — II Corinthians 5:7

The "faith" part is still strong, but the "sight" part is hard to take.

For several months, to all appearances Grace has been as happy and healthy a three-year-old as anyone could want, free at last of medications and living a normal life except for the more frequent medical examinations and tests. Her language has been exploding; she is bright and funny and happy. She delights in her family, and frequently initiates video calls with Grandma, Dad-o, and Noah.

But NF1 (neurofibromatosis type 1)—a genetic disorder that Grace was born with, though it was not discovered until after her second birthday—has long been the elephant in the room. For a year NF1 considerations had to take a back seat because of the immediate need to deal with the dinosaur in the room, her JMML (juvenile myelomonocytic leukemia), which was caused by the NF1 mutation. Thankfully, for all that time the leukemia was the only manifestation of the disorder.

Actually, another problem had been there all along, but was hidden. As you may remember, her audiologist noticed a mild hearing loss in her right ear at her first exam, and again subsequently—but in every case there was something else to blame it on (a cold, COVID). Now, however, the doctors have turned their attention to it, and to a small lump Heather had noticed in that ear. After months of bouncing around—from "no worries, it's just fluid in her ear," to "maybe it's a neurofibroma, we'd better do some testing," to "it might be a fibroma, but that's not causing her hearing loss, so we'd better do some more testing," to "great news, it's not an NF1 fibroma at all, but we're going to take biopsies to be sure," to "oops, the biopsies say it's definitely a plexiform neurofibroma, and the options for treatment are not pleasant." And then on Wednesday, "the neurofibroma is much larger than we thought, and Grace needs to start on a novel medication that has all sorts of potential nasty side effects, for which she'll need to learn to swallow a pill whole twice a day—and take it for at least two years, maybe for life." Knowing Grace, she'll take it all in her stride, but it's rather hard for this Grandma's heart to take.

In Heather's words:

We had our appointment with the NF1/oncology doctor yesterday. It turns out the neurofibroma is even bigger than we thought. In addition to what we already knew, which is that it goes from her external ear where we can see into her middle ear, it also extends down under her ear into her parotid gland which is a salivary gland in the cheek. This is a plexiform neurofibroma, which is something that has actually been there since birth. And it has grown over time. (There are other neurofibromas that can come later possibly, but they are not the plexiforms.) This plexiform right now is benign, but it could potentially become malignant at some point. An initial screening has indicated that this one is one step towards becoming malignant, but they are still unsure of how many steps the body takes to get there.

Grace will be going on a medicine which is designed to shrink the tumor, and it may prevent some other kind of tumors. This medicine can have some unpleasant and even dangerous side effects, including diarrhea and rashes, vision impairment and heart issues. So Grace will be going in monthly and then every 3 months to check on all those functions. Right now, the plan is for her to take this medicine for 2 years, and then reevaluate, based on new research and her body's response to the drug.

One fascinating thing that I learned yesterday is that the longer hair on her right side that we have noticed since she was very young is related to this neurofibroma. The doctor said that because of extra vascular activity on that side it is not surprising that it would cause faster hair growth. When I heard that, I went back to my list of Grace's symptoms that we made before her NF1 JMML diagnosis while we were trying to figure out what was going on with her. I noted that she also would get redness on her right cheek when she ate sometimes. We thought at the time it was an allergic reaction, but it is likely due to the extra vascular activity. (It still happens sometimes.)

This will be TMI for many of you, but there are several medical people who will read this and be curious about the drug. It is called Koselugo (selumetinib) and you can read all about it here. When I think of the terrible potential side effects of this very new drug—it was granted FDA approval only in 2020—I remind myself that until five years ago there was nothing they could do for inoperable neurofibromas but let nature take its course, likely with effects worse than the drug.

Some of you may be wondering (I hear you Grandma!) why could they not see this in the imaging. The reason stated is that the plexiform neurofibromas are a soft and spongy tissue, and is easy to not notice them, and/or think that they are something else. The ENT even said that it's made of the same kind of tissue that your outer ear is made of anyway, so then it's really hard to distinguish.

On top of all that, Heather just added:

Grace's kidney numbers from her lab draw yesterday were concerning to the doctor, so she's getting another draw today and then an ultrasound on Tuesday.

Prayer requests:

• That Grace will be able to swallow the capsule (twice a day!).
• That she will not have any serious side effects. We would also appreciate if she didn't have any other side effects. It's been really nice the last few months to not have to deal with diarrhea.
• That the medicine will do its job, which is to shrink the tumor. I forgot to ask if her hearing loss is permanent or if it could come back with tumor shrinkage.
• That the results of her kidney tests will be good news.

Thanks for hanging in there with us!

Tomorrow (April 9) is a big meeting with Grace's doctors to discuss how to move forward with her ear situation. The results of her biopsies were not great news. It gives one the ping-pong ball feeling: No worries, it's just fluid in her ear—Maybe it's a neurofibroma, we'd better do some testing—It might be a fibroma, but it's not causing her hearing loss, so we'd better do some more testing—Great news, it's not an NF1 fibroma at all, but we're going to take biopsies to be sure—Oops, the biopsies say it's definitely a plexiform neurofibroma, and the options for treatment are not pleasant.

As usual, Heather says it best. You can see some other news and pictures as well on their site.

Grace's NF1/oncology doctor called Jon with biopsy results on Friday. It is the opposite of what we were hoping. Both biopsies indicate plexiform neurofibroma and it's really one big tumor that connects from the outside where we can see to the inside behind the eardrum. Surgery in this delicate area is not advised. We will have a meeting with the doctors Wednesday to discuss treatment. Some good news is that Jon has talked with other NF1 parents whose kids have done well on the medicine.

That news was a blow, but I am doing better after attending a prayer meeting on Friday and church on Sunday. I am holding onto the hope that God is still working and will heal her one way or another and in his timing.

Both Jon and I are going to the meeting tomorrow, so we can be clear on the options, side effects, pros, cons, etc.

Enthusiasm, fortitude, patience, and joy are good qualities in a president.

I wouldn't wish that job on one of my grandchildren any more than I'd wish them leukemia. Nonetheless, I would vote for her.

President Grace Daley speaks at the Smithsonian.

From Daley Ponderings:

Grace is having ear surgery tomorrow to explore what's going on, get a biopsy, and maybe get a tube in.  The oncology/NF1 doctor also managed to schedule her bone marrow aspirate for the same day so Grace will not have to be sedated twice in a few weeks.

Prayers for all that accompanies sedation (including fasting, Jon's conversation with the anesthesiologist, and emergence) are appreciated. And that they will find exactly what they need to, that everything will be clear. And that her marrow will still be all Faith's!

I'm more than pleased that they thought to spare her the extra sedation.  I'm less happy with the idea of ear surgery, but sometimes you have to trust that the doctors know what they're doing....  And pray.

Jon began his latest update on Grace this way:

An 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! 

So, great news!

He continued, however with something scary: Because they are still looking for the cause of her mild hearing loss, Grace is scheduled for surgery, and more anesthesia. :( Thursday, March 27, time TBD but probably early morning.

[The plan is] 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.

There's so much to be thankful for, and still so much to pray for. Thank you all for your loving support.