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This is the upgraded version of your regular Sarah updates. Here you will be able to get the latest info, leave comments for Sarah to see and generally be part of this new adventure we are launching. Sarah and I have discovered that much of the NF1 world is hidden from adults who desperately need up to date information. We will be doing our best to launch that here as well as keeping you up to date on Sarah herself. You may hear from Carol (Sarah's mom), Mitch (Sarah's Dad), Abbey (Sarah's Sister), or Patrick (Sarah's Brother in Law). If you are very lucky, you'll be here to catch the posts written by Sarah herself!
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09-03-21 A Very Full Week
Last Wednesday's COVID booster knocked me for a wallop, but after sleeping three days, I am finally recovered. Recovery was necessary as...
thelilsarahjane
Sep 3, 20212 min read
32 views
1 comment
08-27-21 Don’t Panic
When one goes through something, sometimes, there is a tattoo to commemorate the experience. With 6 rounds of radiation starting around...
thelilsarahjane
Aug 27, 20211 min read
43 views
1 comment
08-25-21 The Birth of the Studio Apartment
Demo commenced for my studio apartment in Abbey's house. Here, Patrick and David were working on the area that will become the bathroom...
thelilsarahjane
Aug 26, 20211 min read
32 views
1 comment
08-23-21 A Birthday to Remember
Amidst the s-storm that has become a large part of the lives of my family and me, I had a birthday. For my 42nd year, and the general...
thelilsarahjane
Aug 26, 20211 min read
45 views
1 comment
08-15-21 Good Surprises
What a roller coaster. The constants in my life have been friends, sweet kitty Bob, family, and the incomparable boyfriend, John. He is...
thelilsarahjane
Aug 17, 20211 min read
193 views
3 comments
08-13-21 A Day Without Answers
Today was supposed to be a day of information. The Tumor Boards meet, there was going to be a quorum, and I would get a call. Apparently,...
thelilsarahjane
Aug 14, 20211 min read
36 views
1 comment
08-11-21 The Psychology of Oncology
Abbey and I had a productive office visit with Dr. Blondin from Yale. Usually, we go to New Haven, and since I didn't need an MRI, we...
thelilsarahjane
Aug 12, 20211 min read
35 views
0 comments
08-10-21 Another Trip in the Tube
Well, I was supposed to have a month off of going in the tube and having prednisone so I could tolerate the contrast. Dr. Piotrowski an...
thelilsarahjane
Aug 12, 20211 min read
33 views
1 comment
08-06-21Retuning Home 2.0
Wow! What a week. We have driven to John’s Hopkins(Baltimore) on Monday, north to Yale (New Haven) on Wednesday for a Thursday...
thelilsarahjane
Aug 6, 20211 min read
37 views
1 comment
08-04-21 Returning Home
We are doing what we can to add joy to this Baltimore trip. Abbey and I took Patrick to two of our favorite eateries— Captain James Crab...
thelilsarahjane
Aug 4, 20211 min read
41 views
3 comments
08-02-21 Back to Baltimore
Road Trips should be more fun. After a long day of working outside in the sun, Abbey and Patrick are driving me to Baltimore for...
thelilsarahjane
Aug 2, 20211 min read
43 views
1 comment
07-29-21 Unwelcome News
We are trying to breathe. It seemed so much easier two weeks ago with the words “stable.” Then there was an emergency telemed...
thelilsarahjane
Jul 30, 20211 min read
59 views
3 comments
05-28-21 Unexpected Ophthalmology
On Thursday, I had my quarterly visit to my fancy/award-winning neuro-ophthalmologist at Yale. Dr. Kohli and her team did a thorough...
thelilsarahjane
May 30, 20211 min read
30 views
0 comments
05-20-21 A great way to manage dosing...
... a rainbow pillbox. I thought this was a long way off, a day-of-the-week pillbox that separates times of day. At 41, it turns out the...
thelilsarahjane
May 20, 20211 min read
37 views
0 comments
05-13-21 A Long Road
Waking up at 4:30 am does not come easy to many people, but waking up at 4:30 to run a half marathon or marathon feels purposeful. I know...
thelilsarahjane
May 13, 20212 min read
40 views
0 comments
05-05-21 It is a working space!
On this overcast and rainy afternoon - I am in my new happy place, my writing studio! It might be chilly outside, but my stylish space...
thelilsarahjane
May 5, 20211 min read
33 views
1 comment
05-01-21 The Magic Dosing Time
The "thing" Andy saddled me with (by way of Abbey) is no joke. Add seasonal allergies, and I sound like a pug! Even with being encumbered...
thelilsarahjane
May 1, 20211 min read
44 views
2 comments
04-29-21 We have Shiplap
Well, it’s been an adventure of bridge crossing, medicine dosing, and pampering. But first, the writing studio! Patrick and Dad spent...
thelilsarahjane
Apr 29, 20211 min read
25 views
0 comments
We’ll cross that bridge when we come to it.
Sarah and I crossed many literal bridges this past weekend as we made our way to Baltimore and back. It started Wednesday morning when...
Abbey Taylor
Apr 25, 20211 min read
39 views
1 comment
Breathe
It’s hard to say when I stopped breathing, but since Sarah’s diagnosis in January I have had these strange moments where I suddenly...
Abbey Taylor
Apr 7, 20212 min read
42 views
5 comments
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