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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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04/06/21 An Unintended Diet
Today was spent at Yale... 7:15am - 5pm. During one of the many waiting periods, I was remarking to Abbey that I was going through my...
thelilsarahjane
Apr 6, 20211 min read
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0 comments
04/04/21 More Prescriptions and Protocol
While my face regimen doesn't align with traditional scientific practices, estheticians helped me develop a regimen to combat my adult...
thelilsarahjane
Apr 4, 20211 min read
20 views
0 comments
03/31/21 A Couple Days of Management...
A bright spot. Last month, I spent hours on the phone to start my prescription with Novartis. (This is likely due to the storm in TX that...
thelilsarahjane
Mar 31, 20211 min read
27 views
1 comment
03/29/21 We Have Screens
Yay! We are getting ready for spring/summer. Kloter Farms returned today to install screens for the porch. Abbey’s idea to have a screen...
thelilsarahjane
Mar 30, 20211 min read
16 views
0 comments
03/28/21 It's (Coming) Alive!
Deep, lingering fatigue coupled with necessary hours spent to navigate insurance challenges, doctors' appointments, and health randomness...
thelilsarahjane
Mar 28, 20211 min read
24 views
0 comments
03/26/21 Micro-Fridge
Mekinist has to be stored in a fridge, and early in the medication process, Mom and Dad purchased me a micro-fridge so I don't have to...
thelilsarahjane
Mar 26, 20211 min read
21 views
1 comment
03/20/21 The Tragic Story of Magic Mouthwash
Before starting the Mekinist, Yale Pharmacy gave me a list of side effects. They were grouped into "guaranteed to happen," "likely to...
thelilsarahjane
Mar 20, 20211 min read
20 views
0 comments
03/17/21 Update
I am more tired than I would like. Friends and family remind me that this is okay and that I am "ridding tumor cells from (my) body."...
thelilsarahjane
Mar 17, 20211 min read
32 views
3 comments
03/05/21 :: sigh:: The joys of chemotherapy
...and other things they don't tell you. Before making the transition to fundraising for academic medicine, I was working with women who...
thelilsarahjane
Mar 5, 20211 min read
28 views
0 comments
We have good news!!! 3/3/2021
The mekinist appears to be working! Sarah is feeling better, her balance is better than it’s been in quite a while and her MRI today...
Abbey Taylor
Mar 3, 20212 min read
35 views
1 comment
02/26/2021 We Have Power!
The writing shed came on January 26, and I was optimistic it wouldn't be long before I would be in it, writing. I knew it needed permits,...
thelilsarahjane
Feb 27, 20211 min read
31 views
2 comments
02/24/21 A Field Trip to the DMV
The other day Mom casually asked if I wanted to take some fancier photos than what we did to document my dermal neurofibromas...
thelilsarahjane
Feb 25, 20211 min read
26 views
0 comments
02/21/21 More Naps!?
I felt like I was doing so well, but I needed another nap in the afternoon. I am hopeful that this is a result of a perfect storm:...
thelilsarahjane
Feb 21, 20211 min read
18 views
0 comments
02/19/21 Napping to Function
Recovery from the 2010 craniotomy made me accustomed to the non-linear healing cycle, but man, does it wear you out. Yesterday, I felt...
thelilsarahjane
Feb 19, 20211 min read
20 views
0 comments
02/18/21 Seizing Control Where We Can
My overall mental state waffles between "I'm fine" to "Holy crap, this tumor is more than a tumor; it's brain cancer." For the last week,...
thelilsarahjane
Feb 18, 20211 min read
25 views
0 comments
02/17/2021 Deep Gratitude
One of my all-time favorite church songs is "Let Us Break Bread Together." While I've mostly sung it during communion, whenver I hear it,...
thelilsarahjane
Feb 17, 20211 min read
35 views
1 comment
02/15/2021 A week of Chemotherapy
Tomorrow will mark one week of being on oral chemotherapy. I must admit, I was surprised that I felt like I had "medicine head" during...
thelilsarahjane
Feb 15, 20211 min read
33 views
1 comment
02/12/2021 Adjusting to the meds
When you’re told you’re going to have to start chemotherapy, you know there will be an adjustment to your daily routine... alarms to take...
thelilsarahjane
Feb 12, 20211 min read
24 views
1 comment
02/09/2021 A Rocky Road and a New Beginning
I wanted to keep this blog light and asked my family to help by having the same tone for their updates. Truthfully, navigating this new...
thelilsarahjane
Feb 11, 20214 min read
31 views
1 comment
The unexpected 2/02/2021
We anticipated some challenges with this new chapter of Sarah's medical care. We did not expect such a large roller coaster with the...
Abbey Taylor
Feb 3, 20212 min read
49 views
4 comments
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