Comments on Daley Ponderings

Comment on Day +725 update, MRI this week

The Shahans — Mon, 02 Feb 2026 16:04:13 -0500

"The Big Toe is called Market." Grace is so funny and sweet! Looks like a great crew for being together for celebrations and snow days! Thanks for the updates!!

Comment on Day +725 update, MRI this week

Denise — Mon, 02 Feb 2026 15:50:17 -0500

Blessings to all of you.....though by the smiles I can see you are being blessed.....

Comment on Appointment Yesterday

Jon Daley — Fri, 05 Dec 2025 06:40:59 -0500

A shorter version of the post if that all got too complicated:

Basically, the MRI results from last time show there is something on her eye, but it is hard to see due to her moving, and also we don't know what it looked like 6 months ago, so it might not be growing, I suppose might even be smaller, and sometimes these growths grow so slowly that they aren't a problem at all. She'll get another MRI by February which will give better results because they will put her to sleep.

Blood tests are better than last time: thyroid med is working and kidney test was back to lowish/normal. Appointment today with the kidney doctor to see what she says.

Comment on Healing and Testing

Dave W — Thu, 04 Dec 2025 12:42:31 -0500

Hallelujah, Grace!! And praise the Lord!

Comment on Appointment Yesterday

Denise — Wed, 03 Dec 2025 12:08:49 -0500

Oh Daley family, God has certainly trusted you with difficult assignments.....that you have accepted and excelled at....I know He takes joy seeing how well you handle each situation, I am praying for all of you, as I know this touches each of you

Comment on Isaac's 23rd birthday

SursumCorda — Fri, 21 Nov 2025 09:48:20 -0500

What a thought! You could be a grandmother now.... (No, I'm NOT rushing any of my grandchildren! We can wait awhile to be great-grandparents. :)

Comment on Isaac's 23rd birthday

Serina — Fri, 21 Nov 2025 09:46:53 -0500

Wow. I had forgotten that he was the same age as Maya (who turned 23 late last month). Sending love to you all.

Comment on Isaac's 23rd birthday

Bethany Grover — Fri, 21 Nov 2025 09:16:18 -0500

Wow! Sending love and hugs.

Comment on Testing preliminary results

SursumCorda — Thu, 13 Nov 2025 20:14:29 -0500

I remember as a child asking to have spinach, like Popeye. So my mother bought a can ("like Popeye") for me. I was shocked when we opened it because the spinach was green, not black.

Comment on Testing preliminary results

Jon Daley — Thu, 13 Nov 2025 20:03:42 -0500

I have seen Popeye, though our kids might not. We've watched some old cartoons, but not those I think.

Boston said it might make sense to have Faith checked again by the PCP, though they said that thyroid issues aren't transmitted through the bone marrow, but I did read some case studies that said it can, though probably rare, like everything else...

I took part in a MEK inhibitor webinar conversation today put on by NF Collective and learned that among the 1 in 3,000 people that have NF1, there are 1 in 5 that have plexiform neurofibromas that could potentially be treated by a MEK inhibitor. (And so the other 4 in 5 either have PNs too small or "only" have cutaneous fibromas, though they made a joke about pain tolerances among most NF1 patients:

Doctor: How much pain are you having?
Patient: Oh, I don't know, the normal amount.
Doctor: Well, normal is zero pain.
Patient: ????