Daley Ponderings

As far as we know, the surgery went well. He took two biopsies, one in front of the eardrum and one behind. There was not much fluid, so he did not put in a tube. We will get results in several days. The bone marrow aspirate also apparently went well, and that also takes about a week to get all the results back. 

The cotton ball they put in her ear got soaked through, though it was not supposed to come out until tomorrow. But Jon put in a new one and there seems to be no more bleeding.

As Jon mentioned, 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!

When she bites into a clementine, it gets a face!

She is in a phase where she loves making dough. She has requested it nearly every day the last week.

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!  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!