NIH Day 4, part 1

We were woken by our nurse about 6:15am to have Jane’s IV placed, and shortly thereafter we were taken to the pre-operative area.  There Jane was hooked up to all sorts of monitors, had all her information reviewed, met the anesthesia team and surgical nurses, and met all the surgeons one more time.  They even had to draw on Jane skin to mark the appropriate side of the surgery!

 

We told one of the surgical nurses that we liked her pin.

While we were waiting we could see the list of other surgeries being performed this morning (though not patient names, of course).  Some were recognizable (“colonoscopy”, “spinal puncture”), others less so.  The title of Jane’s surgery was definitely the longest (“cystoscopy, ureteral stent placement, robotic assisted removal of retroperitoneal neurofibroma with intraoperative nerve monitoring”) but we decided that we're thankful to have Jane’s procedure rather than some of the others listed (“partial gastrectomy, removal of liver mass”, “placement of Ommaya reservoir”—which we had to look up).

A way of delivering chemotherapy directly into the brain—definitely does not sound fun.

We also got to text with Todd while we were waiting.  He sent Jane hugs and teased her with a picture of herself when she was 8 years old.  He also sent us (per Jane’s request) the day’s question on our Lord of the Rings trivia calendar at home.  Jane knew the answer.  Incidentally, this kid can think under pressure.  While she was having her IV threaded, I tried to distract her by having her name state and provincial capitals.  She didn’t hesitate (Tallahassee for Florida, Carson City for Nevada, Saskatoon for Saskatchewan!)

Jane, age 5

Duh.

That said, I think this is the most rattled I’ve seen Jane, and that is saying a lot.  She didn’t cry at all, but kept telling me, “I’m scared.”  Who wouldn’t be??  For the pre-operative “huddle” during which they confirm the procedure with everyone, there were three nurses, two anesthesiologists, and six surgeons all around her bed!  I told her over and over how brave she was, that I trusted the doctors and nurses and that they would take very good care of her, that it was normal to be scared, that being scared doesn’t mean you’re not brave, and of course that I loved her.  She did admit at one point that later she’ll be able to brag that she “battled a robot and won”.  I love that girl so much :)

They took Jane back to the operating room at 8:15am, so now I’ll probably have 5-6 hours to wait until the surgery is finished.  After checking in with the Waiting Area, I went to get coffee in the café.  I hadn’t wanted to have breakfast in front of Jane this morning since she wasn’t allowed eat!  While I was there I saw a woman wearing a t-shirt that said “Rare Disease Mom”.  I told her I liked her shirt and that I was a rare disease mom, too.  It turns out the woman and her 21 year old daughter, Julia, were from Florida and that Julia had been in several clinical trials at NIH for the past 7 years, though her most recent trial had been canceled.  I wished her luck and told her I hoped the next trial would be the most helpful of all.  Julia asked for Jane’s name so that she could say a prayer for her <3

One of the things I’ve missed this time around at NIH are these kind of interactions with other families.  The pandemic prevents us from eating meals together at the Children’s Inn and from socializing with other residents and patients.  Usually meeting other Inn families helps us feel like we’re not the only ones going through such strange medical experiences.

Speaking of other Inn families, Jane received a good luck video from one of her NF friends, Travis, who we’ve seen several times at the Children’s Inn.  Travis himself has been through a number of surgeries, so he knows exactly how Jane feels.

Thank you all for your good luck wishes and prayers and thoughts!  It makes us feel less alone <3