top of page
NF
Resources
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!
Search
Only Sarah could be lovely post seizure 1/09/2022
On January 9, Sarah got up, had her breakfast and was about to start writing in her apartment at our house. Moments after entering her...
Abbey Taylor
Jan 14, 20221 min read
222 views
4 comments
A day in the life... 12/30/2021
First let me start by saying thank you to everyone sending pictures. If you are reading the blogs and have not sent any pictures but...
Abbey Taylor
Dec 31, 20212 min read
112 views
3 comments
It’s Been A While 12/7/2021
Sarah was doing tremendously well recovering from radiation and then she started to feel worse. She was struggling with her eye, it...
Abbey Taylor
Dec 7, 20211 min read
116 views
1 comment
11/4/21 - Trendy Haircuts
Remember that trend where people were going to fancy salons for a fire haircut? It turns out there are several types of fire haircuts - ...
thelilsarahjane
Nov 4, 20211 min read
56 views
1 comment
10-27-21 Treatment #28
I had my last radiation treatment yesterday. YAY! The benefit of having a neuro-onc that grew up in your area of CT and is virtually your...
thelilsarahjane
Oct 28, 20211 min read
56 views
1 comment
Week 5 - Treatment 23
The end is in sight! Twenty-three treatments down, five to go. (If you’re counting, you’re as surprised as I am - the treatment plan is...
thelilsarahjane
Oct 20, 20211 min read
43 views
1 comment
10-11-21 Week 4
Week 3 (treatments 16-19) had some ups and downs, which required headache management. Aided by my family and scrupulous notes, we got...
thelilsarahjane
Oct 11, 20211 min read
49 views
2 comments
10-04-21 Week 3 Begins - Day 11
The second week of radiation is in my rearview mirror, and today marks the Start of Week 3, Day 11. Last week’s appointments included a...
thelilsarahjane
Oct 4, 20211 min read
42 views
1 comment
09-28-21 Week 2, Days 6 & 7
I’m making the most of my days as much as I can being MEK-free. The dexamethazone adds an extra energy bump, but it brings me past my...
thelilsarahjane
Sep 28, 20211 min read
46 views
0 comments
09-24-21 Radiation Day #5
Week 1 / Day 5 of radiation is done. Five more weeks or 25 treatments to go. Got to geek out with the techs and ask lots of questions...
thelilsarahjane
Sep 25, 20211 min read
36 views
1 comment
09-23-21 Radiation Day 4
Day 4 of radiation provided lots of traffic, hazards, and delays. Fortunately, they were able to jockey another customer into my slot,...
thelilsarahjane
Sep 24, 20211 min read
28 views
0 comments
09-22-21 Radiation Day 3
Coming home from Day 3 of radiation. Today also marks a second full day of no MEKinist. Improvements I’ve noticed include: typing with...
thelilsarahjane
Sep 23, 20211 min read
31 views
0 comments
09-21-21 Radiation #2
Today marked Day 2 of my 30 days of radiation. Since yesterday was the big day to confirm placement of me, today’s confirmation didn’t...
thelilsarahjane
Sep 21, 20211 min read
24 views
0 comments
09-20-21 Day 1
Today was day 1 of 30 for the radiation that will take 6 weeks. Naturally, I didn’t sleep too well last night, so the day took more out...
thelilsarahjane
Sep 20, 20211 min read
30 views
1 comment
09-14-21 Checklist
We had the final meeting with Dr. Blondin today before I begin radiation. All questions and concerns were answered, such as What is plan...
thelilsarahjane
Sep 15, 20211 min read
40 views
0 comments
09-11-21 Monitoring and Tests
It was a busy weekend. Yesterday, a telemed monitoring system was delivered. With the tablet and accessories, I send daily updates of...
thelilsarahjane
Sep 15, 20211 min read
30 views
0 comments
09-10-21 Just In Case...
The ever-thoughtful John suggested I have an overnight bag with two sets of clothing in case radiation wipes me out one day and traveling...
thelilsarahjane
Sep 10, 20211 min read
35 views
0 comments
09-08-21 Another MRI...
Dad drove me to Milford, CT today (about 1.5 hrs away) to get an MRI. Securing an earlier MRI allows the physicists and dosimeters to...
thelilsarahjane
Sep 8, 20211 min read
29 views
1 comment
09-07-21 Neuro-Psychology
After waiting over three months, I wa finally able to see Dr. Franklin Brown... at 8:30 am, with a 1.5 hour drive. Dad and I opted to...
thelilsarahjane
Sep 7, 20211 min read
35 views
1 comment
09-06-21 A Very Full Three Day Weekend
The long weekend was full of surprises. John was on schedule to work half a day on Saturday and I wasn't sure when he'd be down....
thelilsarahjane
Sep 7, 20211 min read
36 views
3 comments
bottom of page