Update 9- In & Out and Out & About

Update 9- In & Out and Out & About

A long post, but the past couple of weeks have been pretty eventful. Amri had several procedures; Brad, Michael, and Hava came to visit; we took them out exploring; Amri turned 18; we moved from our hotel in downtown to our room at the Childrens Inn, and then to her inpatient room in the hospital; Amri began chemotherapy; and we got some unfortunate news in my family.

Last week, before our loved ones arrived, Amri had her wisdom teeth removed. They were a potential site for infection after transplant. She also had one sitting very close to a nerve and leaving it could have resulted in some complications.

She was very sweet in her delirious post-extraction conversation with me (until the nurse politely told her to stop talking- it's not good to talk immediately afterward.) The one thing she said was that as she was getting loopy, the dentist asked about her family and she told them she has a sassy little sister and they all laughed. I took a photo of her puffy little chipmunk cheeks and she kept lifting her hand up. She REALLY wanted to make this peace sign and when I asked why she said "selfffffffiieeee" and then fell asleep.

Typically, they start you on ibuprofen every 6 hours to reduce swelling and help manage pain. Unfortunately, they couldn't give her any painkillers after she reached the recovery room, as they would have interfered with her next day's procedures. They gave her some of her favorite juice- Ocean Spray Apple (she refers to it as "the Good Stuff.") She even got to take a couple back to save for Brad and Hava. Amri felt ok most of the day and we eventually got back to our hotel room for her to sleep.

The next morning she felt pretty awful, but thankfully her appointment was fairly early so she didn't have to feel bad for long. They fully knocked her out for her bone marrow biopsy, her central line placement, and her bronchoscopy. This was the 3rd time she's had a bone marrow biopsy- where they make a small punch into your sacrum and pull out a sample of bone and bone marrow. The central line is like an IV- hers is in her neck and has 3 heads on it (so we have nicknamed it Cerberus.) They use the central line to draw blood and administer medications, like chemotherapy. During the bronchoscopy, they put fluid and a tiny camera in her lung, then sucked most of the fluid out. She had a small cough afterward, as her lungs worked the remaining fluid out. She spent the rest of the day in a recovery room. Amri wasn't allowed to take her ibuprofen again, so she spent much of her time sleeping and resting her face on icepacks. Her face hurt more than anything else.

The next morning she felt pretty horrible. We were early to the hospital, so her unit hadn't opened for the day. It was a pain in the patoot, but we finally got someone to approve her pain killers. Then she checked in and had her test dose of chemotherapy. They gave her a small dose and then checked her blood over the course of six hours. Her biggest complaint was her face. She was heavily swollen and days behind on her ibuprofen regimen to control the inflammation, so it was another afternoon of naps and icepacks, and a another meal of mashed potatoes and mushy macaroni. She pushed through the pain, excitedly waiting for Brad's plane to land for his weekend in Maryland. We got back to our hotel about 15 minutes before his taxi pulled up. They were so happy to see each other (despite their faces here...)

For dinner we went to the Mexican restaurant, Guapo's. We've had crummy luck with salsa in Maryland so far, so we were pleasantly surprised when our food was yummy. The salsa was tasty, and the sweet tamale corn cake was delicious. Made these Texans feel a little closer to home.

We've had a surprising amount of bad customer service up here. It's like the "norm" to not be personable with customers. Waiters say "What do you want?" and cashiers don't even tell you the total- they just stare at you until you put your credit card in the machine. At one of the grocery stores, the cashier kept telling some other employee he wanted to eat a cheese sample and finally called her over to go get it for him- all while we were just waiting for him to ring up a single box of cookies. It's so weird. But our waiter in the Mexican restaurant was AMAZING. He was friendly! He smiled! When he noticed Amri putting cold water glasses on her swollen cheeks, Hector promptly refilled both of them and brought her a nice tall carafe so she could cool her face. He even called her "Mi hija" throughout the meal and she felt so loved (that's Spanish for "daughter" and is what her daddy and her Buelo call her.) So we raise our glasses to Guapo's!

The next day, as Amri's pre-birthday adventure, we took Brad to the Smithsonian National Zoo.

Amri and I, waiting for the circulator to take us to the subway.

Lovely lion kitty, basking in the sun as he guards the entrance to the zoo.

Had to visit the pandas again.

This Matamata looks so happy and cozy, and a little drunk.

Dinner at the Cheesecake Factory.

Being super cute.

The next morning, Michael and Hava flew in. We picked them up at the airport. 

Hava had a surprise for Amri. Hava had basically never cut her hair, other than random home trims.

She decided, a few days before they flew out, to cut her hair in a show of support for her sister, and to donate the length to an organization that makes wigs for sick children. 18 inches of hair! I'll make a post later with both of the girl's beautiful hair cuts.

After the airport, we took Hava and Michael's things to our hotel and had some lunch. Then we had to head back to the NIH campus to catch the shuttle to a different airport to get Brad home. The kids hung out on the Childrens Inn playground to kill time.

Another temporary goodbye. I am so glad he was able to come and give her a sense of peace.

The next day we went in to D.C. to see monuments and stuff. We showed Hava and Michael the wonders of the subway, did lots of walking, and had a delightful encounter with urban wildlife.

The park was full of cute little grey squirrels- who are all much fatter than the ones on the NIH campus.

Right when we were looking out the window of the Washington Monument, a helicopter landed at the White House. Later that night, when we were leaving dinner, we stepped outside at the same moment a presidential motorcade drove by.

Found Texas at the World War II Monument.

Reflecting Pool

Lincoln Memorial

The reflecting pool was drained and full of mud the last time we were here. So much more majestic this way.

The next day was "moving day." We loaded 7 suitcases and 4 back packs and a full laundry hamper, and various other bags into a shuttle and moved out of the hotel and into the wonderful Childrens Inn on the campus of NIH. We spent much of the day unpacking and sorting between what will be leaving with Michael and Hava, what will be staying in the room until April, and what will be going up to the hospital for Amri's inpatient stay. Before bed, she went to check her little mail box and found a note saying she had a delivery on hold at the desk, She was totally SHOCKED when the attendant came out with a MASSIVE stack of mail. She spent quite a while opening and reading this heap of cards. She LOVES LOVES LOVES getting mail.

Then we had to go over to the hospital and fill out admission paperwork. When they showed us the room Amri will be staying in, there was a nice banner waiting for her. Then we left "on pass" for 2 days of birthday excursions.

The next day was her birthday! 18! My goodness. This girl amazes me. So lovely and strong and smart and brave. When I was 18, I met Michael and we started down our path together. And now our oldest is 18, and here she is blazing trails, like the Phoenix she is.

When she opened our room in the morning, she discovered the Inn had decorated the door!

Being silly on the subway.

We ate lunch at an odd little burger place called Ollie's Trolley. It's under Hotel Harrington- which made Hava really happy. She went to Harrington Elementary. Also, their symbol looks like the Batman logo.

Amri wanted to explore the Smithsonian National Natural History Museum for her birthday. This starfish is about the size of my pinky nail, and I just love how you can see scootch marks on the glass, where he'd been climbing around.

She's holding a live tobacco hornworm, which really isn't a worm- it's a caterpillar. After the museum, we went to see Cats at the movies. It is exactly as terrible as we expected it to be. It was a great day!

When we got back to the Inn, she had another heap of mail, plus a big bouquet of balloons! She was giddy, reading everyone's well-wishes.

The next day we slept in. When we rolled out for lunch, the Inn brought Amri a birthday cheescake and sang to her. Then we went to the mall.

If you like deals, you should go shopping with Amri. This girl is a bargain hunting blood hound. And she finds the cutest stuff. I mean, how lovely is this top on her?

When we got home she had MORE MAIL! Here is what came that day, plus her $3 "Good Things Will Come" shirt, and $1 scarf (see? bargain hunter!), and some underthings she got for her birthday.

The next day she had to check in at the hospital for her inpatient stay. She will be inpatient until late February. On days when her counts are good, she'll be allowed to leave her room and walk around the campus- but it's winter in Maryland and she's cold when it's fall, winter, or spring in Texas, so I'm not sure she'll be feeling up for many strolls outside. As I type this, it's 27* outside. No, thank you.

Inpatient check in day was also morning #1 (of 4) for pre-transplant chemotherapy. We arrived before 7am (gross - we're not morning people) and they gave her some medications to counteract the less desirable effects of the chemo- like nausea and seizures. 

The meds also make her sleepy and a little grumpy. Here,  Amri is asleep and my other little dwarf is napping in the fold-out chair/bed in the corner. 

The next day we rearranged the room a little. Michael and I are taking turns staying the night and we moved the little guest bed under the window to make it easier for the nurses to access the bins under the counter.

We hung Amri's cards on her bathroom door so she can look up and be reminded of her friends and family and all the things she's looking forward to coming home to. Our "guest bedroom" is under the window- the chair/bed and a small cabinet where we put some games, and we toss our day bags in the corner. Amri's bed is in the middle of the room. We brought pillow cases from home and got her a snazzy fuzzy blanket to soften things up a bit. She has a tv on a bendy arm thing that sticks out of the wall. One of her nurses is going to try to help us connect her Firestick so she can watch her shows. We are a few floors up and her windows face some lovely trees. We often see hawks soaring by. The campus has a large deer population, and many noisy little grey squirrels. The room at the Inn is ours until the end of April. When she is moved to outpatient (end of February), she will get to sleep at the Inn again and we'll just walk across the parking lot to the hospital for her appointments.

Yesterday was day 3 of chemotherapy. She has been so tired. When she is awake, she has been very quiet and either crochets or colors. She has had an excellent appetite, which I hear is another side effect. When she feels moody, she lets us know and we all busy ourselves until a nurse or doctor comes in again. Each day she has a nurse assigned to her, and they come in to get vitals (blood pressure and temperature) numerous times. The nurse also comes in a couple times a day to give her pills, or to administer liquid medicines through her central line. The nurse also gives her chemo, different doses at different times. They have all been good about explaining what each thing is and talking to her about how she feels. On week days, small clusters of people in lab coats come in at random times. At least one of them is a doctor, and there's usually someone in the cluster that we have met before. They come in little groups because this is a research hospital and they are always learning new things. We also learned that once a week, Amri will get a visit from an Art Therapist and a Recreational Therapist. This week Amri made a collage and chatted with the Art Therapist about local wildlife. 

Last night, before bed, Amri and Brad had a video chat. He got our mail for us and saw that her Ipsy had come in. My sister-in-law signed her up for Ipsy a year or two ago as a Christmas present and Amri just loves it. Like I said, she LOVES getting mail, and Ipsy is a little makeup bag with samples of different beauty products. So Brad, being the wonderful guy he is, called her up and opened her bag for her and showed her each of the products that will be waiting for her when she is well again. She was so happy, listening to him read the little descriptions. It was a pretty great way to wind down the day.

Today was her last day of pre-transplant chemotherapy. Chemo has made her so, so tired, and really brought down her spirits. She naturally has low blood pressure, and the sedatives have made it lower. We played some bedside Uno today. While her numbers are still good, they've encouraged us to get her up and go for a walk around the hospital to get her blood moving. With no chemo tomorrow, we're hoping she won't have to take the specific medicine that makes her so groggy. She feels sluggish and clumsy and homesick. She is really missing Brad, and home, and autonomy.

Her transplant is set for January 23. Transplant day is also called Day 0. On Days 3 and 4 she will receive another (lower) dose of chemo to minimize graft vs. host.

Her donor is unrelated- a 10 out of 10 match - a mysterious stranger granting my daughter the greatest gift she will ever receive. These past few weeks have been so emotional for all of us, and we are so unbelievably grateful for the outpouring of love we have received.
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At this time, I ask for healing and strength for my family- not just my household, but my extended family as well.

This past week, one of my cousins started chemotherapy (for a different illness), one of my aunts had a series of seizures, and my grandfather passed away. He was 92 and wonderful.

Pawpaw and I used to march in the St. Patrick's Day parade together when I was little. He dressed like a leprechaun. I still wear a sweatshirt we got at the Irish festival when I was probably 10 years old...it's an adult size 3X. You can imagine what that looked like on me as a kid.

We all had Easter at Nana and Pawpaw's when we were little- Easter egg hunt in the town square. I would talk my cousins out of their black jelly beans, and Pawpaw and I would sit together and snack away.

He introduced me to British humor- Mr. Bean, Faulty Towers, Keeping Up Appearances. He was easily amused but also always sort of cantankerous- maybe because he was born on Halloween. We made "burnies," and man, he thought that was a clever thing to call our horrible attempt at baking.

I inherited my long "Dempsey legs" from Pawpaw, and some of my creativity. He was a painter and illustrator and drew every card my grandparents ever gave me (except for the year my Nana died). He drew me on the cover of most of them, and I still have every one of those cards. When I was maybe 6, my Valentine's card featured a drawing of me with stink lines waving off of my head and it made me so furious that I drew a card of him like that and made my mom send it to him.

As far back as I can remember, on the wall in his bathroom there was this framed scrolling flowery artwork- with a great back story. He drew it and sent a copy to his sister, who thought it was so pretty that she took it to church and showed all her lady friends. But she hadn't realized, because of all the flowers and feathers, that it actually spelled out "Shit" in cursive. When Michael and I got our own home, Pawpaw said he'd send me a housewarming gift- and even though I'm not really a vulgar person, I wanted a copy of that sign for  our bathroom. So he sent me one, and created a new one for Michael. Drawn in the same style, he sent us one that says "Caca". They are both framed and hang in the girls' bathroom- and only half our guests can actually read them.

We had Amri's first birthday party at his house, and by coincidence, she and Pawpaw wore matching khakis and  baby blue sweatshirts. When the girls were little, we'd sometimes have lunch at Pawpaw's and he always had something unusual in the mix- he liked to rehydrate pork rinds by tossing them in soup.

In recent years, anytime Michael had a client meeting in Arlington, he'd take me with him and we'd go visit Pawpaw. He liked westerns, so one time I took a dvd for us to watch, and somehow I forgot just how wild The Hateful 8 is, and well, I watched a Quentin Tarantino movie with my Pawpaw. He loved it.

On his 92nd birthday, this most recent Halloween, I sat with him and pulled up all of my cousins on Facebook and showed him photos and videos of all of his grandchildren and great grandchildren.

On Thanksgiving, he wasn't feeling up to seeing the whole extended family all at once, so Michael, Amri, Hava, and I stopped by to visit him after dinner was over. It was Thanksgiving, and I am so thankful we got to see him, that he was in good spirits, that he was feeling well.

I am thankful that when it was his time to go, he passed in his sleep, that he was not alone. I would love to be home to hug my mother, but I am so thankful to be here, to hold my daughter.

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