Here are the girls on Black Friday, wearing the punny jammie tops I made them for our Christmas season kick-off lazy day of tree trimming, cheese boarding, and movie watching. I'm super proud of my puns, y'all. I have mom delusions of my girls wearing these every Christmas for all eternity.
We had Thanksgiving at my aunt's house. We brought the special Carrasco recipe Green Bean Casserole- which is one of Amri's favorite foods. It's sort of like macaroni and cheese, only with beans instead of noodles. It's delicious, if I do say so myself.
We'll be staying home for Christmas this year- trying out a new thing where we each get to a day to decide what the whole family is doing. I'm pretty excited about it. There are rumors that we may be building a gingerbread house...
We recently received Amri's transplant calendar from NIH, and have since been planning the next 4 to 5 months of our lives- which is crazy.
Michael made us a spread sheet- a column for each family member, which we have been slowly filling in with important dates for each one of us, and planning out when Michael and Hava and Brad will be able to come up for visits, and when we'll have a house-sitter and such.
Here are some of the more important upcoming dates:
January 1- Amri and I fly out to NIH. (Day -21, three weeks until transplant)
January 8- Amri's wisdom teeth removal (Day -14)
January 15- Amri's birthday (Day -7)
January 16- chemotherapy begins (Day -6)
January 22- Transplant Day (Day Zero)
For NIH, Bone Marrow Transplant patients must stay near the hospital until roughly Day +100, which keeps us there until the end of April.
During our last NIH trip (late Sept/early Oct), Amri went through fertility preservation. The day before we left, our beloved black lab Emmitt died. He was over 14 years old. When we got to the airport the next day, there was a beautiful young black lab sitting at our gate. He was an explosives detecting dog, moving from Texas to somewhere up North. He was very, very happy to see us. It was a great way to start our journey.
We stayed in a hotel for one week, and then a room opened up at the Children's Inn our second week. When Amri was in good spirits (before the injections started kicking in) we got out to explore Bethesda and D.C. It was a pretty rough 2 weeks- full of injections to the tummy, blood draws, nausea, and home sickness. She passed the time by doing homework, napping, playing the piano, and watching endless Halloween baking shows. One morning, we were awakened from deep sleep by the fire alarm flashing and blaring, and were evacuated from the Inn. It was a false alarm. On retrieval day, we had to get up at 4am and take a taxi to a different hospital. After the retrieval process, we had to stay (scheduled) additional days for observation. During that time, the transplant team started pre-transplant testing. Basically, they examine all of her systems to get a baseline- so she had dermatology appointments, eye exams, hearing tests, dental exams...
The eye exam was intense- they put strips of paper in her eyes and had her close them and wait for ten minutes so the paper could measure how much moisture was soaked up. Then they dilated her eyes- and that lasted for 4 hours. The dentist explained that wisdom teeth can be a site for graft vs. host, so Amri's transplant team set it up for Amri to have her wisdom teeth removed a couple weeks before her transplant.
We want to thank everyone who has reached out, sent Amri a treasure, and/or contributed to our fund-raising goals. Not only does your support help us in a practical way, it really, truly lifts our spirits to know you are thinking about us during these cloudy days. Feel free to click on the How You Can Help link under the "Important Stuff" header on the left. We'll be updating it periodically.
Photos from Sept/Oct trip:
Our hotel room in downtown Bethesda, before we moved to the Children's Inn.
Good lookin' salon window by our hotel.
Water feature outside the subway stop.
Our first time taking a subway. The D.C. area subway system is really clean and not at all like the subway they show in movies based in New York city. It's also CRAZY windy when you transition from the escalators to above ground.
We went to the Smithsonian Zoo- which is FREE by the way. We saw PANDA BEARS! Throughout my childhood, I was called Mandy Pandy Bear, so this was totally awesome!
\
Being her totally tubular self...
We were in the aquarium building, standing next to each other at the edge of this open tank, having a conversation, when this LOUD PINK BLUR dropped from ABOVE and flapped its way RIGHT INBETWEEN US, smacking us with its wings. He then proceeded to stomp around on the railing while we screamed in alarm. Two seconds of terror, also known as a Roseate Spoonbill.
Days of weird, not-home food, and we found a familiar place: Dog Haus Biergarten. We Love Wieners, apparently.
We met Sally, the salad robot at NIH.
Exploring the playground at the Children's Inn. There's a herd of deer that live in the woods behind the playground. They were watching us.
Hearing Test in a sound booth!
Playing the piano at the Children's Inn. Sometimes people would stop to watch her.
Amri's favorite juice. Ocean Spray apple juice is impossible to find outside a hospital setting. She looks forward to it after crummy procedures. It's "the good stuff", apparently.
Funny videos cheered her up on days when she didn't feel like leaving the room.
Fertility preservation retrieval day. We had to get up at 4am and travel to a different hospital. It was so, so cold in there. The white tube is a little bed heater.
Attempting a smile, from a wheelchair, with dilated eyes, and an empty tummy. She had to go without breakfast and lunch several times for testing, and on this particular day, Chicfila was delivering to the Children's Inn, and she was REALLY excited about it. I dropped her off for an appointment and then booked it back over to the Inn to get her a sandwich, only to find they had run out. I brought her an alternative lunch, and we trekked to the mall the next day to get her some Chicfila.
We Facetimed Michael and Hava most nights. Here's what my handsome hubby would look like with a combover.
If you are viewing this post from your email, please click here to view the full blog and any features you might have missed, like Care Package Ideas or our Important Stuff Column.
No comments:
Post a Comment