New find

A friend of mine shared this video on Facebook today. After listening to it, I immediately had to watch a bunch of this guys other videos on You Tube. AMAZING voice and talent in this kid!

Take me out to the ball game!

Today was Mason's first baseball game. He was really looking forward to his trip to the real Wrigley Field. We had fun and he did great considering the game was during what normally would be nap time.

I'm afraid I spoke too soon last night about not feeling too terrible. The nausea hit hard last night and didn't let up until this afternoon. I'm feeling better now on the nausea front, but the tiredness is still hitting me. Trying to rest as much as I can between having fun with my boys.

Here's some pics from today.

Waiting in the subway

Family fun (including Monks)

Pretzel time!

Go Cubs Go

Goofy boys

7th Inning Stretch

Mason loves his new Cubs flag

Sorry, Red Sox. 

Went to check out the Lego store after the game

Together again

My family is all together in Chicago now. The boys arrived Sunday morning to a mommy/wife that was very excited to see them. Mason had his first ride on the subway...just like Curious George! He was exhausted from the red eye (he only slept for about the last hour of the flight) and crashed pretty well in the apartment.

Monday I let him sleep in and went to check into the hospital. There was some initial confusion about which room I was going to be in, but it was soon squared away. After Todd and Mason were up and fed, they brought me coffee and caught the tail end of my visit with the nurse practitioner that works with Dr. Burt. I got started on an IV of fluids first, had the dreaded foley catheter placed (which actually wasn't as bad as I thought) and they started Mesna. Let me back up, the foley is because the type of chemo they're giving me can stick to the wall of the bladder and cause damage. The mesna is a medication that protects the bladder, and the fluids and lasix keep you hydrated and peeing, but sense I have bladder issues from MS, the foley ensures that everything is being flushed out.

About a half hour before the chemo starts, they pre-medicated me with lasix, two anti-nausea medications, and a steroid. Then the cytoxan (chemotherapy) was started. The boys were back in my room (after Mason's lame attempt at a nap) just in time for the first chemo to be started. It was an easy two hour infusion, but I was glad they were there for part of it. The main immediate side effect I had was being really hot. Probably from the steroid more than anything, but it was really uncomfortable.

Mason and Todd brought dinner back to the hospital room and Mason snuggled with me and watched a movie on my laptop while we enjoyed our pizza from Gino's. They left to get Mason in bed, and I had a pretty uneventful night of trying to get some rest in a hospital. I had a little nausea that was treated quickly before it got bad, and between a 1am blood draw and lasix dose and a 5am check of fluids and vitals, I actually slept pretty well.

Tuesday morning (today) Dr. Burt and the nurse practitioner Amy came in the morning during rounds and ordered another dose of the pre-chemo anti-nausea medication to try to help avoid any further nausea for tonight (fingers crossed, so far it seems to be working). After I was given my discharge instructions and medications to start this weekend, I just had to wait for the mesna to finish running through the IV and to be disconnected from all my "hoses" as Mason calls them. I was back in the apartment in time for lunch.

I was more tired today than I expected, so I took an extra long nap while Todd and Mason went out exploring. It was nice to just relax today in our apartment. Mason needed a few extra snuggles tonight from mommy, especially at bed time, to convince him that I wasn't going to sleep at the hospital again, but he seems to be sound asleep already as I type this.

Tomorrow is our Cubs game, which should be fun. Then we have a whole list of places we want to go see before we head back home. Here's some pics to enjoy for now...I need to get the ones off of Todd's phone, too. He has some cute ones as well.

Super tired on the subway

Excited for his new tent in the apartment

My hospital room

Keeping mommy company

Chilling again with mommy

Chemo, Mesna, Zofran and fluids 

Monks helping out with the infusion

My room had a gorgeous view of the lake and part of Navy Pier

Motivation

Todd has been sending me pics of Mason and things they are up to back home. One pic he sent me was of Mason at his preschool. They put on a mini Heart Run last week and Todd went to watch the "race". This picture is now going to be the one that I use when this gets really hard or when I feel like "why did I do this" to remind myself exactly what I am here for. I would give anything to be able to run with my boy.

My new running buddy

Who could resist that smile?

She was an American Girl

Let me start this post by saying, once again, how glad I am that I don't have a daughter and have to deal with all this American Girl crap. There is a HUGE American Girl store here on Michigan Ave, and it seems like some kind of Mecca that these girls flock to. You see them everywhere, with their little dolls and their matching outfits. It's weird. And expensive.

The second big thing on my mind right now is the heat. The apartment will work out fine. It's close to the hospital, close to shops/restaurants, has a kitchen, etc. One thing it doesn't have is a thermostat in the room. Or air conditioning. I've been getting increasingly worried about the lack of A/C, knowing that it couldn't possibly stay just 50-some degrees and rainy the entire time...and I was right. Today? 86. I've been waiting ALL DAY (it's now exactly 3:23pm) for the A/C man to come put a window until in the apartment. He just left, and I'll let you guess where I'm sitting as I type this.

Monkey is cooling off, too

All of my appointment are done for the week. I have had blood drawn (twice), toured the blood center, had an EKG, chest x-ray, brain and cervical spine MRIs, echo, pulmonary function test, been seen by the study neurologist, an infectious disease doctor, and then finally my study doctor. Everything is all set now for Monday morning, I'm every pre-registered for my hospital admission. Monday morning I'll get checked in, admitted to the Prentice Women's Hospital at Northwestern, they'll access my port, put in a foley, give me lots of fluids and my first chemo. I'll stay overnight and get discharged Tuesday.

This is the building I'll be in when I am an inpatient

I suddenly felt like I was at the DMV

Inverted T waves, but otherwise a nice, normal EKG

I've been missing Todd and Mason so much! I haven't ever been away this long before and it is not fun. I think the worst part is knowing that in June it will be for so much longer! I hope the mobilization chemo doesn't make me feel too awful and that I'm able to go and have fun with Mason and Todd, but I know I'll be happy to see them either way. I've been able to either FaceTime or Skype with them every night, which has been so nice. On past trips we just talked on the phone the "old fashioned" way. I even have my mom hooked up with Skype so I can talk to Mason when he is there. 

By far the best part of my day!

Just three more sleeps now until my boys are here!!!!