New friends, Ferry and Food

Today, day eleven, was a fun one. Another infusion, but a surprise. There was another family there with four children, two with diabetes. A twelve-year-old and a seven -year-old. We got to all hang out in one room and play video games. It was funny because the nurses were trying to keep up with vital checks and who was doing what! We had FUN! I got a high reading at lunch, so we ran stairs in the hospital (shhh..)

After I said goodbye to our friends we rode the ferry over to Bainbridge Island. We walked a LOT and had a very good dinner. Mexican food, one of my favorites. The ferry ride was about half hour and on the way home the Seattle lights were awesome.

I have had so many fun adventures during my stay here in Seattle. It makes up for the IVs and the hospital time. I come home Monday, See you guys Tuesday! (No, I am not growing a tail or turning green)

Terrific Tuesday

Today - no blood draw! Which means a shorter day becuase we are not waiting for lab results. I got mail today! Thank you everyone for sending me those cool posters. I put them up in my hospital room.

Everyone here is looking at them, and thinking they are very cool. I am working on my medical merit badge for Boyscouts while I am here too. Today I am trying to learn how to take my own blood pressure and stuff.

A couple weeks without a little sister and big brother is very nice...even if I do have an IV hanging from my arm while I tour around Seattle.

My grandma and grandpa Kerr are coming today, and I plan on showing them my favorite sites. We have a tour scheduled for the Theo Chocolate Factory. They make organic chocolate. (yes...organic carbs still count)

Monday, Monday...

Monday..week two! Today at the hospital I had to get my 2nd physical. It's kind of wierd. The doc has to look me all over and ask me questions. She askes me if there is any pain, and she looked in eyes, ears and mouth. She made sure I had all my fingers and toes. All was good.
Lab results came back with good news today. Drug worked as expected and I have 6 more "infusions".
My Grandpa and Grandma Kerr are coming up tomorrow. I am excited about that. They will get to meet the doc's and see what I have been up to. My rash is going away, and is not itching! That is really good news...and I have avoided so far the throw -up that some people have experienced. So..I am lucky!
Tomorrow I meet with the diabetes educator to talk about carb counting and etc. I have to report often on my results so they can see if I do have a smaller insulin requirement. But, that's ok she is nice.
I went down to the hotel and played pool and watched a little TV on the big screen tonight. Earlier I was shopping for a Seattle hat or T-shirt....but I think we are going to a Mariners game on Saturday...so I might wait.
Hope you guys are good!
I am just fine!

underground and unexpected adventure

Easter Weekend was different, but good. I still had to go and get my drug everyday, but had time in the afternoon to play. My Dad came up and we had a very fun weekend. We watched Monsters vs Aliens on the IMAX 3D screen. We went on an underground Seattle Tour, and went to a Choose Your Own Adventure improv play. It was a lot of fun.
When I was in the hospital we played video games, card games and watched a movie.
Study wise, my immune system is still down, and the white cells are not coming back up. But that means the drug is working and everything should be back as expected at the 30 day check.
One more week to go, and I will be done. If you ask me, these weekends are even better than they are when I am in Oregon. So don't feel bad!
Mom is making me drink lots of water to keep my veins hydrated for IV's. Because my midline IV failed and that was a hassle.
I am half way done, and only have seven more days of hospital left. I am feeling good and so far I am still glad I did the study. It really is helping scientist and Dr's move a drug forward that will help people with Diabetes.

Day Five and the medicine is ALIVE

Today is the first day that I get a full dose of the medicine. Good news is lab results are all looking good...bad news is one of the side effects showed up today. I woke up with a few bumps on my arm and by the time I had walked up to the hospital I had a full blown rash on my arms and chest. It is supposed to be gone by the time I get home. It is itchy, but the benadryl helps with that.

I got my IV dressing changed and the male nurse was funny. It stung a little bit. He was trying to talk to me during the change, and he was funny..he asked me if I had a crush on anyone in my class....and then he asked me if I liked high school musical. He was nice...but I don't think he had kids at home!

My dad is coming today, I am exciting about that. Hope everyone has a good weekend. I still have nine more days! Thank you everyone for keeping in touch!

Here is a picture of my rash...hope it grosses you out! :)

Thursday worse Day

Today has been a very, very long day. I couldn't eat breakfast until after my procedure - the sent me down to radiology and placed a long term IV in my arm. It was supposed to take about a half an hour....and it started at 10:00. By one o'clock the were finished and I could eat breakfast/lunch.
It was scary, but the Dr. let me watch the tube and needle go in my vein on a tv screen, then he gave me the dvd.
The good news is the drug is doing what it is supposed to do. The research Dr's are watching me close. All my white cell numbers are low and that is good ....so that means that hopefully the confused cells are going away and they will make new healthy ones that are not as confused!
(that's the easy way to put it)
Tonight I get out late..so I don't think I will do anything exciting. But I have got to watch Back to The Future 2 and 3.
I got a cool surgeons hat too..the will do anything to keep kids entertained!

Wild and FREE

Today we got out a Little bit early and a very, very nice Dr. who also has Type 1 Diabetes gave us a ride to the zoo and free passes. We zoomed through the big Seattle Zoo. It was fun! (Woodland Park Zoo)When we are at the zoo we heard a lot of loud animal noises and it was kind of scary. The tiger was very restless....i think he was hungry!My favorite was the gorilla's and the Monkeys.As far as medical stuff goes..tomorrow I get another IV, I have to go too radiology and not eat anything in the morning until after it is in. This IV will stay in for the rest of the time.Hope everything is good! I have been working on my algebra packets and my state timeline. I have to do it first thing in the morning...that Benadryl they give me just makes me a zombie!

Wild troll hunt

We got out of the hospital at about 4p.m

had out free dinner at the hotel.

then set out to find this troll we had heard about

who lives under a bridge.

Problem was we heard he lived under three different bridges.

We set out to find him and it took three buses but we did it!

It wasn't the 28 express, it wasn't the 28 local, but the five got us close. It wasn't up the hill..it was down the hill and around....but the troll was cool! I rubbed his belly for good luck!

Good news was it took only one bus on the way back. Went to Nike Town, but it was more like Nike neighborhood...didn't seem that exciting for down town Seattle.

Tomorrow I have to be in the hospital at 7:30 a.m and if the Doctor gets around in time I should be out earlier.
Working on homework and timeline for State report. South Dakota is a cool state.

Doin' it again

Last night after we were allowed to leave the hospital we grabbed our free dinner at the hotel and walked to the Sculpture Park. That was fun because the sun was setting and the art was lit up by the moon. Check out some of the cool pictures.

Today is infusion number two. So far no side effects, but the nurse keeps checking for a tail. Right now I am waiting for the infusion, and they have me on saline (salt water) through the IV to keep it "open".

Tonight we are going to walk to see a sculpture of a troll under the bridge. It is over by Kite Hill. Kite Hill is where the picture of all the people are sitting on the hill. My mom says that Kite Hill is across the water from where the house boat that was used in Sleepless in Seattle.

I am going to be ok. Thank you for keeping in touch!

Adam

Bumb Day Monday

Today we started the Abate Trial. I had to go tot he research center at 8 a.m. No food until after lunch time. I had to drink a "boost" drink that was about 1/2 carbs and 1/2 protein and fat. The reason the do that is to get a idea how high my blood sugar goes without treating it with insulin. Next year when I come up again, they will do it again, if my blood sugar is about the same in a year after the test, than this drug works!

The shake was strawberry flavored but it didn't real taste that good. They said it would be delicious but I didn't realize they were being sarcastic until I actually tasted it.

They taking blood every 30 minutes and getting lab results back. I had to have an IV.

We will start the drug after lunch.

Hope everyone is a doing good and I would love to hear from you

Adam

Fun Day Sunday

Today we arrived in Seattle. On the way we stopped and toured the Washington capitol. It was a beautiful day and we went ahead and Rode the Ducks. An tour that takes a World War II vehicle on land and water. It was fun, our Captain Matt Agascar was fun and they played good music while we cheered and laughed and saw my new home for a couple weeks.

I am carb loaded after a Cheesecake Factory dinner. I played a great trick on my Dad and told them it was his birthday. (funny huh) They sang...and actually it is his 1/2 birthday.

Took a walk around the neighborhood and now it's time for me to hit the sack. Tomorrow starts the real stuff. I am nervous because I know I get a IV. I am not worried about getting bored, but I am a little nervous about getting hurt. But....I am going to be just fine!

Step one carb overdose check

If you have been paying attention, you know that I was supposed to be taking in 150 carbs per day for the next three days. Today was a school day. So my mom sent the email to the school nurse. The school nurse misunderstood the directions and thought I was supposed to eat 150 carbs per MEAL.
So she was having me eat this huge lunch with three desserts! I was STUFFED! Now it's time for dinner...and I'm still full!
So we are off to a good start. P.S...I would not advise eating three desserts at lunch.

Tomorrow is the JDRF (Juvenile Diabetes Research Foundation) Hope Gala. My Dad is speaking for the "Fund A Cure" speech. For those of you who do not know, my 6-year-old sister has type 1 as well.
So..I will update on Sunday when we get to Seattle! Tomorrow morning is the Math 24 competition...go Cloverdale..hopefully I can do some good math ..maybe better than the well-meaning school nurse (who we love)
SEE YA

The first set of directions....carb load!

My first set of directions came. It's time to carb load! Mixed meal tolerance test, this is what they will use to see if my insulin cells are getting stronger after treatment...or not. For now, it will be a high blood sugar and a correction on Monday. Being a lab rat is such fun....who plays with your system like this!
All for the good of the cause. Good news, Mom says it's Cheesecake Factory for Dinner on Sunday night...Dr's orders!
Want to read some high tech garble? It's probably top secret, but I am a kid..what are they going to do...test new drugs on me...wait...
Read ahead...I get to go through the AUTHORIZED PERSONNEL DOOR! whohoo!


Adam,
Marli is looking forward to seeing you on Monday, April 6th at 8:00am. She will meet you at the Clinical Research Center on the 8th floor of the Virginia Mason hospital. To get to the Clinical Research Center please take the “hospital elevator” to the 8th floor and follow the signs to the Clinical Research Center. Come through the double doors marked “Authorized personnel only” and down to the end of the hall. This is where you will check in for Adam’s appointment with us.
In preparation for Adam’s visit on the 6th, which includes a mixed meal tolerance test (MMTT) he will need to eat a high carbohydrate diet for 3 days prior to this appointment. The minimum carbohydrate intake for these 3 days is 150g each day. Eating a high carbohydrate diet for these three days will make the results of the MMTT more accurate.
On the night before the appointment Adam will need to fast from 10:00 pm until the end of the testing the following morning. This means no food, soda, coffee, tea, tobacco, or chewing gum. The good news is he can have water and we recommend he drink plenty of water both the day before the study and on the morning of the study. Do not have Adam take any over the counter medications during this time. If he is on prescription medications please give Marli a call so that we can determine whether the medication will interfere with the results of the MMTT. During the 10 hour fasting period she should also refrain from vigorous exercise. Adam should take his insulin as usual the day before the study. Please test his blood sugar at 6:00 am on the morning of the visit. His blood sugar needs to be between 70 and 200 in order for us to perform the MMTT. If his blood sugar is greater than 200 at 6:00 am, you can give him some Humalog/Novolog to bring the blood sugar down into the required range. It is important that he refrain from using any short acting insulin on the morning of the visit unless his blood sugar is over 200. Please bring his insulin with you to your appointment, as he will take it when we are finished with the testing.

Trial Closed

I went to the Abate Trial website tonight, and found out that it is now closed. I was one of the last participants to be accepted.
I snuck in under the wire, and I am glad. I hope that this experience is fun and some good comes out of it. I am looking forward to living in the big city for a couple weeks, but not so much getting a IV everyday.
I will be going to the Virginia Mason Hospital in Seattle for six hours everyday for two weeks, getting a steady dose of the new trial drug. The drug is supposed to stop the attack on Beta cells, and they think I would have better insulin control. It won't cure Diabetes, but it might make it easier to manage. The drug is called Teplizumab.
I leave on Saturday. So far I have my xbox 360, movies and games packed. It'g going to be an adventure!