New buddy

On Monday I had a mediport placed. It was a really quick procedure that was done by one of the radiologists I work with in the cath lab. And, yes, I scheduled it around his schedule to make sure I knew who would be placing it. Everyone in the cath lab (who I also know) was so nice and made me feel so comfortable during the whole thing. It was definitely more sore this week than I had expected, and I'm all kinds of fun colors of bruised, but it's healing up well. Of course, this is the one place Mason will push off of me or ram into which about brings me to tears every time. Hopefully the tenderness will get better...or I'll just get better at avoiding being hit. It is what's called a "low profile" port, so aside from the vanity aspect, I'm also now very glad that it doesn't stick out as much as the bigger ones do.

I have my first Tysabri infusion scheduled for Thursday. I'm anxious to see for sure that my port works, and nervous about the whole Tysabri thing, but I'm also looking forward to the possibility of feeling a little better. I'll be sure to let you all know how it goes.

Back to life

So, on Wednesday I was randomized into the control arm of the study. Guess my gut feeling was right again.

This is a copy of the email I sent out, I don't feel like typing it all over again.

Well, today was the "big day". It started out a little rough. One of my blood tests came back weird, so they originally thought I may not be able to be in the study anymore. It was all cleared up though, and off my number went to the statistician. I'm unfortunately in the control arm of the study.

I'm pretty disappointed, except for the fact that I get to go home tomorrow and see Mason. I really wanted into the treatment arm, but not seeing him for 2 more weeks would have been really hard!

Once I get home, I have an appt with my local neurologist and will switch from Copaxone to Tysabri. I'm nervous about being on Tysabri, but I understand why it's necessary for the study that the control arm patients be on what is currently considered to be the best treatment out there. It is the best, but it comes at a pretty high risk.

I'll be back to Chicago at 6 months, 12 months and every year for 5 years for follow ups. If I continue to get worse, there is always an option to cross over into the treatment arm, so this isn't the end of the road as far as the stem cell transplant goes. Of course, I don't want to get worse either, but that is the nature of MS.

So tonight Todd and I are heading out to watch game 3 of the Stanley Cup finals, and then tomorrow we'll pack and head home. I am looking forward to having straight hair again, this humidity is too much to fight with on a daily basis so my hair has been curly almost this entire time :)

We are now back at home. We still haven't seen Mason because he's at "school" today, but I have a feeling he will be picked up early today by both of us. Until then, it's just the usual stuff around the house and getting back to our normal life.

On the river

Today we took an architecture boat tour. There are lots of different tours you can take in Chicago, but we did the one that the Chicago Architecture Foundation runs. Seriously, if you are in Chicago, you must do this tour. It was such a different way to see these amazing buildings, and learn more about them as well. After that we walked around Millennium Park and checked out Cloud Gate and the Crown Fountain. We are both missing Mason so much, we keep talking about things he would like to see or would have enjoyed doing with us. Maybe on another visit we'll bring him with us. Here are a few of my favorite pics from today.

This is actually where Mrs. O'Leary's famous barn once was. It is now, ironically, the firefighter training ctr.

Inside Cloud Gate (or, the Bean)

Pictures

For some stupid reason, this picture will not post correctly. Frustrating. Anyway, at the Morton Arboretum there was an art installation called "Steel Roots". The pieces were awesome and it was really fun to walk through it with a 7 and 10 year old and hear what they thought each piece looked like. If you get a chance, look this guy up. His stuff is really amazing.

In Lincoln Park, outside the zoo. Just a pretty tree and a cool looking lamp post.

This is Frank Lloyd Wright's home and studio in Oak Park. It was huge, and this picture doesn't do justice to all the tiny details. The blocks around it also had many homes he designed. What a cool place to live.

Also in Oak Park, though, obviously not a home designed by Frank Lloyd Wright. This has got to be the most patriotic home in America. (this one's for you, mom!)