NIH with Hunter

Hunter and I took a red-eye to Washington D.C. on Saturday night, arriving at 6:15 on Sunday morning. He slept from taxi to landing, which was perfect! We took a taxi about an hour out of town to NIH, where there was some intense security. They searched bags, our person (like security at the airport) and then searched the car. They looked inside the whole car, ran a geiger counter and a mirror under it, and had a police dog check it. (I later found out this is because part of the FDA is on NIH campus and also because they have live and dangerous viruses like Ebola that would be harmful if they got loose.)

 Then we got to the Children's Inn which is like a Ronald McDonald house for kids undergoing research at NIH. It is pretty much a kid's dreamhouse. There are toys and things to do everywhere you look, from reading and art corners to camp and video games. The rooms are not fancy, but this shouldn't really be considered a vacation anyways. You're there to be part of research and they remind you of it frequently. If you don't participate in the protocol, you are asked to leave.  Some families live on campus. They provide a locked fridge and pantry in addition to allowing you to borrow from the communal pantry and fridge. It's a nice set up for people who are there long term.

Going to the Children's Inn humbled me. Sometimes I think that dealing with what Hunter has is overwhelming. When I compare him to kids around here, I worry about his limitations and how much worse it all will get. Sometimes I get ahead of myself.  Being in the building with these children who are REALLY ill made me realize how good we have it.  For right now, Hunter is doing just great and we are doing all that we can to figure out what is wrong so that we can help him. There were kids in the Inn who were truly dying. Cancer patients, kids in wheelchairs, kids who would never even go to school. We are blessed right now with what we have. The Children's Inn is amazing in that they have pretty much anything you need. If you forget a toothbrush or hair products or anything of the sort, they have them for you. You don't need to bring a stroller or a wagon - they have that too.  Every night they leave a small toy for your child in a mailbox. So kind of them. They made a package for all 3 of my kids - some books and toys for each to make the little ones feel included (even though they weren't there.) The best part of all this? It's FREE! Well, not really free, but at least we're getting some return on our taxes.

Ok, so on Sunday we rested for a few hours and then my Aunt Chi Chi and Uncle Mike came to get us and take us to DC. We had SO much fun with them. We went to lunch in Georgetown and then walked through the Capitol! It was amazing and we had this nifty stroller for Hunter. Here they are in front of the White House.

 The Washington Monument

 Air and Space museum. Uncle Mike was going to prepare for a conference so we explored with Hunter. He was ecstatic to be there. Ecstatic.

 Me and my man. He was super tired but a good sport.

 Navy! Go Jenn!

 It's amazing what little boys know. He can recognize the difference between a missile and a rocket and I still think they are the same thing.

 In front of the Wright Brother's aircraft. 

 Flying the plane

 Me reading the plaque to him

 Uncle Mike carried Hunter down the steps.

 Look at the Capitol behind us! It was a perfectly beautiful day. We had an awesome time.

  
  We went over to the building where Hunter would get his work done later that day to register.  It was empty. It was so creepy because it is actually the largest brick building in the world. It was 3 buildings that they joined together. When you're inside of it, it doesn't feel THAT big because there is no huge wide open space, but you know it's definitely a large building. They were really efficient about processing his admission paperwork. 

 The playground at the Children's Inn was huge and new. Hunter loved it...for 5 minutes. Then he came over to me and said "I miss Landon." Playing by yourself isn't as much fun as playing with other kids.

 The building in the background is bldg 10 where Hunter spent the whole day on Monday.

 On Monday we were to be at our appts at 6:45 but because I preregistered we pushed it back to 7:15. Promptly at 7:15 they were ready to do Hunter's consent work. I felt bad because I had to wake him up from a dead sleep to get him there on time and he wasn't allowed to eat. He was a good sport. After signing a TON of forms, we went down to the Pediatric Clinic. Interestingly, they will keep his blood on file forever and will test it when they find someone like him who has similar issues. They just helped a woman who has been coming for 7 years.  She didn't fit into any categories (like Hunter doesn't) but over time 14 other people came to NIH who were just like her.  This year they were able to finally diagnose this group and treat them and they are cured now! This gives me hope that even if they don't discover what is wrong right now, they will in time.

Here is Hunter with his IV placed and blood drawn, playing in the clinic. He had urine sample, blood taken, full physical exam and a CT with and without contrast of the sinuses and chest/abdomen. He is one brave boy. They are also sequencing his genome because he doesn't fit any of the immune diseases.  They are going to see if he matches with any disorder at all. I think there might be some relation to Lynch syndrome and they are looking into that too.

We found out very little while we were there. His spleen is slightly enlarged, which we already know and are relieved that it's getting smaller since starting the treatments. Most of his bloodwork looks okay except for his lymphocytes. The number is fine (what my dr. checks) but the distribution is skewed - so there aren't the right numbers of young, juvenile and older lymphocytes.  In addition, they are the wrong shape. We will find out more about this when they get all of the bloodwork back. In good news, the B cells are working just fine. The problem, therefore, is either between the B and T cells or in the T cells themselves. We will wait and see!

 He was scared and tears were streaming from his eyes but he knew that if he cried, his body would move and they would have to start all over again. He is an amazingly brave kid.

 My view.

 He is SO excited to get the IV out of his arm. The next day we had to get his blood drawn and a stool sample but he didn't mind so long as they didn't do an IV!

 We went to eat lunch right after that with my friend Jon who was Jeff's college roommate and my second big brother. This guy is SUPER smart and the reason we were able to go to NIH. He is finishing his Fellowship in Immunology and splits his time between Hopkins and NIH. Like I said, super smart.  He accompanied us to get our permanent badges and just hung out for a few hours. Then he went to the clinical "wrap up" where the doctors discuss what they think is wrong with the kid and then they invite the patient to the meeting to share the details with them. Jon accompanied us and was able to explain most things to us. I felt very blessed to have him by my side and on my side.

 Back at Children's Inn.

 After Jon was done with work we walked to the Metro, which Hunter LOVED and met his wife for dinner.

 And got ice cream too!

 Nerds!

 Jon and Christi. Such cuties.

 On Tuesday morning we went for a blood draw and stool sample and then we were on our way. We took the metro to rent a car and drove into DC. I am so brave. We went to the Museum of Natural History, like I promised we would. Look below! Hunter is holding a whale in his hands!

 He LOVED the dinosaurs. He asked to move to DC because he loved the museums so much.

 T Rex

 Hunter's best dinosaur face

 This old post office was beautiful, I thought.

 Then we drove out to the Temple in Maryland. It was So beautiful. I love seeing angel Moroni rise out of the sky when you come upon a temple. He's always the first thing that you see.

  

We had a great trip. Hunter said "This is the best trip ever!" Which I hope isn't true. Most trips don't involve CT scans and multiple needle sticks. We did have fun and it was good bonding time. I was glad to leave though. I was glad Brian changed our flight to go home on Tuesday night instead of Wednesday morning. Landon woke up this morning (thanks to a 10 second smoke alarm) and was really excited to give me snuggles. Of course, I got him some planes and dinosaur slippers so the snuggles were short. I am SO glad we went. I am relieved it is over. I cannot wait to get the results. Thanks for all the love, support and prayers!