NIH Day 8

We’re home!
 
Jane had a good night last night without pain.  The team had given us a treat—no vital sign checks overnight!  That meant we could sleep uninterrupted for the first time all week!

Buh-bye room 1-2666 NW!

We were discharged around 10am.  I loaded the luggage cart and brought it to the front doors of the hospital where Jane waited for me while I went to get the car.  As I pulled up I saw Jane herself pushing the luggage cart out the door and up to the curb, as if she’d never had surgery!  She wanted to help put the luggage into the car but I wouldn’t let her.

The message we left on the message board in our room

We made it home in about 6 hours—we took our time and made more stops than we might have usually.  Todd and Alec, and especially Henri, were very glad to see us, and we so were glad to see them <3

We missed this little boy!

Jane will attend school remotely this week, and if all goes well she’ll be back in-person the following week.
 
So ends our trip to NIH!  Thank you all for reading along this week and for all your messages of love and support—it helped give us courage <3
 
If you’ve been inspired by Jane’s story, please:

DONATE to the Children’s Tumor Foundation here: www.KRath4Jane.com

This was just one chapter in Jane’s lifelong fight against neurofibromatosis.  Our work to find a cure for NF is far from over.
 
If you’d like to continue to follow our NF journey, you can subscribe to our blog: NFEMom.blogspot.com

PS  A note on my Dr Fauci mask:

As I mentioned at the start of our trip, I had purchased special masks—decorated with a pattern of images of Dr Anthony Fauci—for Jane and me to wear at NIH.  I had several, in different colors, and extras because Jane wouldn’t wear hers.  I wrote to his office ahead of our trip, inviting him to visit Jane while she was in the hospital, not really expecting to hear back.  (I didn’t include anything that would get it automatically rejected, like links or attachments, but I told him if he looked on the NIH.gov website for “Jane selumetinib” he’d find several articles about us!)  I got a form letter response indicating that he was unable to respond to all emails due to his involvement in the Coronavirus Task Force.  Nevertheless, I wore the masks proudly around the Clinical Center and got plenty of positive feedback: lots of double-takes, smiles, calls of “I love your mask!” and “Is that... Fauci??” and even once, “I remember you from your mask!” but we didn’t ever see the man himself.

On the last night of our stay our nurse asked me where I had gotten the masks.  When I told her Etsy, she said she was going to buy one herself.  I told her not to bother, because I had an extra that I hadn’t opened yet, and I gave it to her.  She surprised me by saying that she was going to give it to Dr Fauci directly, and tell him it was from us!  So maybe Dr Fauci will end up seeing our Dr Fauci masks after all :)