NIH Epilogue

Running Update:

3/22/2021 – 3/28/2021:	28.2 mi	4:26:59
3/15/2021 – 3/21/2021:	25.1 mi	4:11:00

I completed the NYC Virtual Half Marathon today!

I’m pleased with my time, considering I had no water or fuel stops, no cheering spectators, and it poured rain!  Since it was a virtual race it will take a few days for all the participants to upload their data and for the New York Road Runners to post official results.

My first race of 2021 for the Children’s Tumor Foundation is done!  It remains to be seen what the rest of our races will look like this year.
 
 
Jane Update:
After we returned home from NIH, Jane had a week of remote school to continue her recovery from surgery.  However, this past week she went back to school in-person and did very well.  She was a bit tired the first day, but had no problems at all the rest of the week.  She received a warm welcome from her teachers and classmates, including a surprise in the mail the first week we were back.

Jane's classmates and teachers are so awesome!

Jane and I sent some gifts to the people who had taken care of us at NIH.  We sent some CTF t-shirts and some Starbucks gift cards, but we also sent some  special books for special people.  

If you read our posts from the hospital you might be able to tell which book is for whom :)

 
NF Update:
We got some final results from Jane’s MRIs and surgery once we were back at home, and all were reassuring.
 
First, I am thrilled that Jane’s facial plexiform neurofibroma—the one she takes medication for—is stable based on the MRI.  I was worried it might have grown because of all the times Jane has had to stop taking her selumetinib this past year. 

The MRI also showed that the tumor in her abdomen (technically, in her “retroperitoneal space”) had continued to grow even since her last MRI in November 2020.  I am so pleased we made the decision to remove the retroperitoneal nodule when we did.  It makes everything Jane went through this past month worth it.

The pathology report on the retroperitoneal nodular lesion showed that it was a “neurofibroma with mild atypia”.  Thankfully, the atypia does not increase the risk of recurrence.  In fact, we learned that many of the distinct nodular lesions they have resected at NIH have some degree of atypia and they have not seen any local recurrence even when they just remove the tumor itself, and not the surrounding tissue.  In case you’re curious, here is a paper published by our doctors, Dr Chittiboina and Dr Widemann, about their experiencewith these surgeries!

 
 
We haven’t even thought about restarting Jane’s selumetinib regimen yet—probably sometime next month, and not until she’s fully healed.  The timing of our next return to NIH will depend on when Jane restarts the drug, but it’s likely to be towards the end of 2021.
 
Thank you all again for following along with our story and for your generous donations to the Children’s Tumor Foundation on Jane’s behalf!  We are so lucky to have such wonderful friends and family <3

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 :)

NIH Day 7

More milestones today!

In the past 24 hours, Jane has only needed Tylenol for pain.  I can’t believe this is the same girl who was requiring morphine 48 hours ago.  She was able to shower for the first time since surgery—boy, did that feel good.  She ate more today (A grilled cheese sandwich!  A Rice Krispie Treat!)  We did laps around the unit and even got to walk outside briefly.

Our unit is adjacent to a courtyard in which patients can walk.

Signs of spring

I feel like dancing!

Barring anything unforeseen, we’ve been told we can go home tomorrow morning.

We’ll follow up with the team remotely as Jane recovers.  We won’t restart her selumetinib until she is completely healed from the surgery—4-6 weeks?—since selumetinib can interfere with wound repair.  We’re still waiting on the pathology report for the tumor that was removed, and on the MRI volume analysis of the original, plexiform neurofibroma still on her face and jaw.  The radiologist on our team doesn’t think there has been any change there, but it will nice to have that confirmed.

So, ya know, just being discharged tomorrow after a major surgery in a different state for a rare tumor during a pandemic, NBD.  How was your day?

:)

NIH Day 6

Things are better today!  Jane and I both slept last night, and Jane’s pain is way better.  She’s still not feeling super, but honestly I think we’ve turned a corner.

Since Jane’s pain was better controlled this morning the pediatric oncology fellow and attending—who reminds me of a dear pediatrician friend of ours from Canada (if you’re reading this, it’s you, Elske!)—and we decided our goals for today were for Jane to walk around a bit, try to eat some more, and maybe even have a shower.  Jane was not thrilled with these ideas, but the fact that I am starting to annoy her makes me think she is feeling a bit more like herself again <3  

Mid-morning a woman from “Recreation Therapy” came by to see if Jane wanted any games or puzzle books.  She also asked if Jane would like to visit the Relaxation Room where they have a type of gentle massage chair.  We thought we’d give it a try, so we washed her up a bit and got her dressed in clothes for the first time since surgery!  Yay!  We had to walk to the Physical Therapy room, a distance about the length of one of the halls at her school (ie not too far).  She made it there easily and we spent about 1/2 hour in the chairs (Jane said they didn’t really make her relax) but walking back to our room we had to stop for her to vomit :(  Poor kiddo.

Maybe not so much.

After some anti-nausea medicine Jane was able to take a nap and I did some laundry.

Our nurse today is awesome again.  Not only is she kind and capable, but instead of a scrub top she’s wearing a t-shirt with Baby Yoda on it :)  All the staff are really lovely here in Pedi Oncology.  I guess you have to be lovely if you’re going to work with children with cancer.  Their daily schedule is so much more humane than in the ICU or adult inpatient units.  For example, they don’t come in patients’ rooms until after 9am!  (To all the patients I woke before 7am in my career: I am so, so sorry.)

Our pediatric oncology fellow this week is great, too.  At one point she discovered that we like the Lord of the Rings, and she was excited because she and her husband are big fans, too.  She checks in regularly now to hear the LotR trivia questions Alec has been sending us.

Duh, again.

For lunch Jane had the first solid food she’s been able to tolerate since the surgery—a peanut butter sandwich!

Updating Todd with Jane's progress

Jane ended up doing several short walks around our hospital unit today.  On one of our walks today we found a bulletin board with pictures of all the staff’s pets.  It turns out our favorite nurse from the NF Pediatric Clinic has a BICHON FRISE just like our Henri!!  We can’t wait to see him again to tell him.

Mr Jessie's dog!

Jane is pretty worn out this evening, but all in all it’s been a day of victories.

NIH Day 5

We had a rough 24 hours of pain and nausea that we haven’t quite been able to keep under control, and as a result not much sleep.  Some good news is that Jane was moved out of the ICU mid-morning to a regular hospital room.  She’s had two of the four IVs removed and has gotten up out of bed several times.  Even though she’s been given permission to eat she doesn’t have much appetite.  She’s been able to sleep a bit this afternoon, but still in more pain than we’d like.  The doctor here tonight is getting a little more aggressive with her pain medications.  I saw Jane smile tonight for the first time since the surgery when the doctor told her, “If you’re in too much pain tonight, then I’m not doing my job.”

 

Our poor girl.
(The stuffed animal on her belly is actually also a microwaveable heating pad,
a gift from Grandma Agnes.)

Mid-afternoon we learned that our NF team was thinking about another full body MRI for Jane!  I almost lost it.  Our poor kiddo can barely get out of bed from pain and nausea, and they want her to lie in an MRI scanner again for an hour-plus??  Ugh!  In general, our NF team would like Jane to have a full body scan every 2 years now so we aren’t surprised by any new tumors.  Her last one was in September 2019, and since we might not be back at NIH for another 6-9 months, the team was thinking we could perform another full body scan before we leave.  However, once they saw how miserable Jane was, they reconsidered.  The plan now is to see how Jane feels over the next day or two.  If it still feels too overwhelming to have the MRI during this visit, we can either have the full body scan at home, or just wait a little longer and have it the next time we’re back at NIH.

I am overtired and it’s been a stressful week, so as you can imagine I’m feeling a bit emotional.  We had just gotten out of the ICU and heard about the possibility of another MRI when one of the hospital chaplains, a rabbi, stopped in our room and asked if we had any "spiritual needs".  I started by saying "no" but ended up crying to him about Jane and even showing him the picture that I carry around of my beloved, late Aunt Anne, a Catholic nun.  The chaplain was so kind to me that now I want to convert to Judaism :)  

Coincidentally, this afternoon, one of my favorite cousins (no, not that one—the other one; the Stapleton Clan knows who I’m talking about) emailed me about the powers of both science and prayer that made me smile.  He wrote, “As Cardinal Cushing told the great Celtics coach Red Auerbach, making the sign of the cross before you take your free throws really helps, especially if you are a good free throw shooter.”

We’re hoping for a better night tonight. 

Thank you to all of you who are reminding me to take care of myself, too <3

NIH Day 4, part 2

Here is the TL;DR version:  the surgery is over and it went really well!!  Thank you for all your love and support!

Jane’s surgery finished around 1pm, just under 5 hours from when it started.  The attending surgeons came out to talk to me and told me they were very pleased with how the surgery went.  The tumor was large, but none of Jane’s vital organs were in the way—her colon, kidney, ureter, and large muscles along her back all cooperated so they didn’t have to be manipulated significantly.  This will help make Jane’s recovery that much easier.  Even better, the nerve on which the tumor was growing turned out not to be as important a nerve as they thought it might be.  Therefore, removing it should have no effect on walking or the nerves to her leg.  THANK GOODNESS!!  The surgeons had to extend one of the abdominal incision to remove tumor, but that is a relatively small matter.  WE ARE SO RELIEVED!!

This afternoon Jane has been awake a bit and had some pain and nausea, but the nurses are giving her medicine for both.  She’s just allowed ice and sips of water to drink tonight, but hopefully in the morning she’ll be able to try some broth and apple juice.  Jane went into surgery with one IV but woke up with FOUR—two in each arm (technically one is an arterial line, but still)—so it’s hard for her to move her arms.  She’s been asking me to scratch her nose for her quite a bit :)  Hopefully most of the lines will be removed in the morning.

Looking good!

As one of my dear friends told me this evening, now it’s Jane: 1, robot: 0
<3

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

NIH Day 3

We packed up our things from the Children’s Inn and were over to the NIH Clinical Center by 10am for Jane’s pre-operative chest x-ray and her semiannual echocardiogram.  Then our afternoon took off! Between 12:30pm and 5:30pm Jane had a pre-operative anesthesia consult, another MRI, and we met in-person with no less than TEN different doctors who will be involved in her care tomorrow.  We met:

#1, 2, 3  The pediatric oncology attending who will be watching over Jane post-operatively, and two of her fellows,

# 4, 5, 6  The urologic oncologic surgeon performing the main part of Jane’s surgery, and his fellow and resident,

#7, 8  The neurosurgeon who will be removing the tumor itself, and his fellow,

#9  The neurologist who will be intra-operatively monitoring the function of Jane’s nerve as the tumor is removed from it (to make sure that it is not injured),

#10  The plastic surgeon who is removing a more superficial tumor from Jane’s skin at the same time. 

My head was swimming.

Our home for the next several days

We learned today that the plan is for Jane to be admitted to the ICU for at least 24 hours postoperatively, which I confess sounds a little scary but we’ve been assured that it is just a precaution.  Jane was disappointed to learn that she was only allowed clear liquids for dinner tonight, but she gamely ordered chicken broth, strawberry jello, apple juice and a cherry popsicle.

Dinner

During a lighter moment this afternoon, one of the pediatric fellows described to Jane a type of medication she had to drink this evening in preparation for her surgery.  He said “It’s odorless and tasteless,” to which Jane responded, “Oh, is it iocaine?”  The fellow chuckled, so we knew he was a good guy (since he got her Princess Bride reference!)

Jane will have another IV placed at 6am tomorrow, then we’ll be brought to the surgical area by 7am for an 8am surgery start.  We’ve been told the average for this type of procedure is 5 hours in the operating room, so it will be a long day.  We’re going to get to sleep early tonight.

NIH Day 2

We started the day bright and early at the Pediatric Clinic, meeting with our favorite Nurse Practitioner, Anne.  Anne reviewed our schedule with us, performed Jane’s physical exam, and consented us for several research protocols related to Jane’s surgery.  It turns out that there are lots of researchers who are looking to study fresh samples of neurofibromas, and Jane’s tumor will be going to at least seven different scientists to help study the effects of various treatments on the tumor cells.  I explained to Jane that the reason she had to give permission for her cells to be studied was to avoid situations like that of Henrietta Lacks.   In 1951, Henrietta Lacks had surgery for cancer and the tumor cells were used for research without her knowledge.  These cells, known as HeLa cells (“HeLa” from “Henrietta Lacks”), are now the most commonly used human cell line in studying cancers, even though the patient from whom they came never gave permission for this.

Jane commented that if her cells led to a breakthrough in neurofibromatosis research, she would allow them to be called “JaCo” cells :)  We also joked that if her tumor was going to be split between seven different researchers, maybe that made them Horcruxes!  (A little Harry Potter humor.)

An aside: our nurse practitioner Anne is an officer in the United States Public Health Service Commissioned Corps, which is one of the uniformed services along with the US Army, Navy, Air Force, Marines, and Coast Guard.  She told us that she only just learned yesterday that she will shortly be deployed, though she doesn’t know to where, to help the PHS with the pandemic.  We feel so lucky that we got to see her during this visit.

Next, Jane had her blood drawn and IV placed so she could receive contrast for the MRI.  The nurse ended up drawing 10 tubes of blood!  Then we headed to the MRI.  Unfortunately, there was a mix-up in the Radiology Department, and they could only perform Jane’s abdominal and pelvic MRI, not the one of her face and ear, nose, and throat.  The additional MRI has now been added to our schedule tomorrow afternoon once we’re admitted to the hospital :(  In a way, it was just as well she has to do the MRIs in two parts because for the abdominal and pelvic MRI today alone Jane spent over 90 minutes in the scanner.

After the MRI and lunch we stopped in the lab to have Jane’s EKG done.  We chatted with the friendly technician there, who told us stories about Dr Fauci, who has understandably become somewhat of a rock star at the NIH Clinical Center.  He told us to look for the giant poster of Dr Fauci in the Clinical Center atrium, and instructed us to watch for him in the halls surrounded by his security detail: “Just look for a group of people in black suits surrounding a little guy in a white coat.”  It turns out that Dr Fauci, known for his huge contributions to science and medicine, is little!  Jane was quite tickled to learn that she, at 5’9”, is two inches taller than him.

A tribute to Dr Fauci in the NIH Clinical Center atrium

Now we’re back at the Children’s Inn for the night, resting up for a big day tomorrow:  x-rays, echocardiograms, more MRIs, hospital admission, and consultation with all our surgeons.  Tomorrow night we’ll report from the hospital.

NIH Day 1

 Running  Update:

Week of 2/1/2021	22.9 mi	3:49:55
Week of 2/8/2021	30.7 mi	5:10:24
Week of 2/15/2021	25.5 mi	4:12:51
Week of 2/22/2021	29.3 mi	4:48:31
Week of 3/1/2021	19.9 mi	3:12:46

This will be the last running update I’ll give for a while since Jane and will be quarantining at NIH for the next 10 days!

Jane Update:

Since we knew we’d be quarantined in our room at NIH once we arrived, Jane and I decided to wait until mid-morning to leave home.  It’s about a 5-hour drive to Bethesda from Madison, so we figured we’d rather have the extra hours at home than at the Children’s Inn at NIH.

We've accumulated a rather lot of CTF luggage :)

The drive was over three hundred miles, and a little under half of it was lengthwise through the state of New Jersey, along the New Jersey Turnpike.  For those who have never driven there, you should know that it’s a quirk of the turnpike that its rest areas are each named for an individual—some well-known and some lesser so—from a number of eras, all of whom have some connection to New Jersey.  Some are named after presidents (Grover Cleveland and Woodrow Wilson).  Some are named for statesmen (Alexander Hamilton and Richard Stockton, an 18th century legislator and signer of the Declaration of Independence—I had to look that up).  There are a few named for writers and poets (James Fenimore Cooper, Walt Whitman, and Joyce Kilmer).  There’s an inventor (Thomas Edison), a Revolutionary War Heroine (Molly Pitcher), a 17th century Quaker (John Fenwick), and even an NFL football coach (Vince Lombardi, namesake of the Super Bowl trophy).  We stopped at the rest area named for Clara Barton (founder of the Red Cross).

We arrived at NIH in good time, though it took us a while to get settled in our room.  First we had to pass through security, which is similar to what you’d expect at the airport (passing through metal detectors, putting our luggage through a scanner) but which also includes having the car swabbed for explosives (!) and other suspicious items.  Upon checking in to the Children’s Inn we had to give saliva samples to test for COVID, even though we were tested at home before we left.  We have to remain within our room, except for appointments at the Clinical Center, until our COVID tests come back in 48 hours.  We’ll even have our meals delivered to us!  The bummer is that by the time we’re cleared to leave our room at the Children’s Inn, it will be time for us to be admitted to the hospital, where we’ll have to remain in our room for the duration of our stay!  We’ve brought lots of books and snacks…

The next two days involve “re-staging” of Jane’s tumors as is done every 6 months, in addition to some pre-operative testing and consultations.  Tomorrow’s most important item are the MRIs.

I got special masks for Jane and myself to wear here, but I’m not sure if I’ll be allowed to wear it.  We’ll be issued approved masks by the Clinical Center, but maybe I can wear this one on top of it. 

Jane has already rolled her eyes at me—I don’t think she’ll be wearing hers :)

NF Update: 

I have been blown away by everyone’s generosity this past week!  THANK YOU for all your donations to the Children’s Tumor Foundation on our behalf!!  You are all rock stars!  We love you all <3