Update 8- First Week of the Big Stay

Jan 1-7, 2020.

Hello friends! It's been a busy, busy, week, starting with rough -but temporary-goodbyes.

Jan 1, Amri and I flew to Maryland. Brad and Hava and Michael took us to the airport. We took some photos before the weight of the world rested a bit too heavy on Amri. After landing and figuring out how to order an Uber (I am always behind the times), we checked in to our hotel. We're staying downtown for 2 weeks until a room opens up at the Children's Inn for the duration of our 4 months.

Made it through TSA (had to go through twice because we forgot about a full sized toiletry in one of our bags...)

Jan 2, we spent the day at the hospital. They have to test or scan just about every system of her body to get a pre-transplant baseline. Lots and lots of tests. We also met with her transplant team and a social worker. In the evening, I went to the grocery store, which is more complicated than it sounds when you have to balance hotel and hospital shuttles, and only buy things that work for a hotel room. But, I think I did rather well!

Most of the outpatient departments have BLANKET OVENS!


Getting a scan.

Jan 3, more tests and more consultations with various doctors. It was also opening night of Hava's ballet company's performance of Tinkerbelle- in which Hava plays a bunny and a child. Amri and I did get to see the dress rehearsal a few days before we left.

On Saturday, many family members drove from all across Texas to watch Hava perform. (Y'all made her feel so special! <3 Thank you for sending me photos. )

While we are outpatient, the weekends are ours! This was our last weekend before Amri begins procedures, so we wanted it to be fun! Saturday we took the subway up a stop went shopping. We went to a  sad "mall." The full store list is: Old Navy, T-mobile, J.Crew, World Market, Starbucks, CVS, and Cheesecake Factory. Next door and across the street we found some better stores, then we ate a bunch of appetizers at Cheesecake Factory (and I got a decent glass of iced tea- Maryland has no idea) and went back to the hotel and binge watched 3 seasons of "The Good Place."


Subway selfie


Snacking on "Fire Ants on a Log" while watching Eleanor navigate the afterlife.

Sunday we ventured out on foot in downtown Bethesda. We went to a really weird tiny two story target, underneath a Trader Joe's. 

Jan 6, more tests and consultations.

Jan 7 (today) was the last day of pre-transplant tests and scans. A weird snow storm also blew in today, causing half of the hospital staff to be sent home at 1pm. I got a phone call that made it sound like our lodging arrangements had fallen through and completely freaked me out, but in the end it got resolved. Made for a long day. We also signed consent with the transplant team.

We waited 2 hours to be seen for one test. It was a weird day. But they gave her toasty blankets and she got to sneek a nap.

Here, they are scanning to measure bone density. The day before she got a really cool scan that measured the volume of each leg, so we now know her more affected lymphatic leg has 24% more volume than the other. Neat!

After our appointments were over, we went outside to watch big fat snow fall quickly from the sky. It was all melty on the ground (so tomorrow is expected to be extremely icey). After we got back to the hotel, we walked to a drugstore and got some icecream for tomorrow.


This was the view of the rooves out the window of the hospital, when we finally got done with today's appointments. We were both filled with joy to see SNOW! Someone on the shuttle (politely) thought we were silly for talking about it so much on the ride back to the hotel. I shrugged my shoulders and said "We're from Texas."

Tomorrow, Amri gets her wisdom teeth out, as they are a site for possible infection and she also has a nerve close to one of her teeth and if they leave them in until after transplant recovery (2 years), she could have nerve damage- so tomorrow it is!

Thursday, Amri will be under anesthesia again while they give her a bone marrow biopsy, put in her central line (a way to draw blood and administer meds for her 4-5 weeks of inpatient transplant stay), and give her a bronchoscopy (put some fluid and a camera in her lung to check for infections).

Friday she will begin her test round of chemotherapy. It will be a very small dose, given in the morning, and then she will have to stay all day as they come in and draw blood and see how she responds to the dosing. Brad arrives Friday afternoon and she really wants to meet him at the airport, but that will depend on how she responds to the test dose. Brad will be visiting just for this weekend, and Michael and Hava arrive for a two week stay- with an overlap where all 5 of should get to ride in a shuttle together.

I'm really looking forward to Brad's arrival, as he makes Amri so happy. Her birthday is next week, so they want to have a bit if date here in downtown.

I'm VERY excited to have Hava and Michael arrive on Sunday. I miss them every day. They will be here for Amri's 18th birthday, for her chemotherapy, and for her transplant, which was moved back a day (to January 23).

Below are some random things from this week. I will post again soon- but I need to get to sleep. It's late and we have to get up early. Thanks for checking in on us!

We thought this uphostery in one of the clinics was funny. Ocean themed, featuring submarines, turtles, fish, and a GIRAFFE.

This is a mural in our hotel. It's really pretty, but half hidden by a booth.

a tour of our hotel room

When we first arrived, the hospital had a display of a multi-department gingerbread competition! These were some of our favorites:

Fa La La Llama! 1st place, OBVIOUSLY.

I love these sheep.

The Upside Down! So cool!

The Lincoln Memorial! (Where I notoriously lost my driver's license when we were at NIH last summer. Induced total panic, as you MUST have your ID to get in and out of NIH and to get on an airplane... but thankfully someone found it and immediatley turned it in to the Ranger Station, so my Michael and Amri were only irritated with me for about three minutes.)

Adorable teapot cottage

an old bird's nest in a low tree next to the side walk at NIH

Tonight on YouTube, Amri found a really long video of a bunch of old Donald Duck cartoons. She and her sister both LOVE vintage Disney cartoons. However, a few episodes were not in English. We were both sort of half-watching while doing other things and had to do a double take. I mean, Donald isn't the easiest to understand when he is speaking English, but each time one in a foreign language came on, not only could we not identify the language, we couldn't tell if it was the same language as the other foreign ones. Still amusing and easy to follow, just extra fun to hear Donald go off on a tirade.

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