Friday, June 29, 2012

Round 15

Friday, June 29, 2012

We started round 15 of chemo on Wednesday, June 13, 2012.  This round was a repeat of the last one, but started with anesthesia and an LP for intrathecal chemo.  It was our first trip to the new hospital and boy was it nice!

The new Ann & Robert H. Lurie Children's Hospital of Chicago

Huge whales over the escalators in the entrance lobby. 

 View of Lake Michigan and all the boats.  With these kinds of views, now we just wish we were out there!

At the old hospital, we were never allowed to leave the hem/onc floor.  Now since they built this beautiful new hospital with all of this wonderful stuff for the kids to enjoy, we are allowed to leave on a limited basis.  We would just wait until the evening when the hospital was empty and then go exploring.  Each floor has an animal theme and Drew would pick a few to see every night.

The 11th floor has a Bamboo garden and Sky lobby with an awesome view and these cool rocks and logs to sit on.

Love the shirt!

On the 20th floor there is a shadow play wall.  If you hold really still a butterfly will come and land on your shadow.

The 12th floor has an actual firetruck that the kids can play on.  The back is even open and tall enough that their IV pole can fit inside, so they can go in and play.

This was a 3 day, 2 night stay with our own private room finally!  It was so nice to not have double to amount of nurses coming in and out of the room or double the amount of IV pumps beeping.  It's kinda crazy to think of the amount of sleep lost over the last year due to the accommodations we were in.  I think this might have been the first time I have slept more than 30 minutes straight at the hospital.   We left on Friday, June 15, 2012 and then finished up with 2 more days of chemo at home.  

We had a visit from my Aunt Clair & Uncle Terry from Utah

 We finally got the yard finished and ready for the swing set.  It was my dad's last free weekend for a little while, so while he was hoping for a cooler day, they decided to just get it done.  
4 guys...
 7 hours...
 90 Degree Chicago heat...
 Project Playground complete!

A bunch of happy kids!  

 A special thanks to everyone that helped put it together and to Bear Necessities Pediatric Cancer Foundation (along w/ 2 wonderful sets of grandparents) who granted Drew a Bear Hug wish and made it possible for us to get such an awesome swing set that all of our kids will enjoy for many years!

Drew's platelets have been hit hard these last couple of rounds and have been dropping a lot faster than they were previous rounds.  We were back on Tuesday (June 19) for platelets.  

Brooke was excited to come with and see the new Ambulatory Infusion Center (AIC) (previously the Day Hospital).  She especially liked the new TV and all of the on demand movies.

After being there Tuesday, we had to come again on Thursday (June 21) for both blood and platelets.  The views are incredible, (although, the cell phone service is NOT).  This was the view from our own private bathroom.

 My Uncle Brent & Aunt Janette called while we were at the hospital and they had just arrived from Utah and their hotel was just a block away from the hospital.  They came by to visit and granted Drew's request for some Garrett's Popcorn which is just around the corner now!

Happy Birthday Kels!  Kelsey turned 1 on Friday, June 22, 2012

We were so happy to all be home together for her birthday and had some cupcakes to celebrate.
She got a new wagon and all the kids wanted to ride in it!

On Monday (June 25) we were back at the hospital for more platelets.  Drew wasn't too happy about having to go AGAIN, so he wanted Blake to come with.  We showed Blake around the hospital and I'm pretty sure he loved it!  You should have seen his face when Drew went to get a toy from the treasure box and the nurse asked Blake if he wanted one too!  
In the playroom at the new Infusion Center.  

By the look on Drew's face, this video game must have been pretty intense.

 Somedays all I hear is, "I wanna go to Blake's house, I wanna go to Blake's house, I wanna go to Blake's house" get the idea.  So it's really nice when they actually get a chance to go to Blake's house!
Dallin & Drew and their cousins Blake & Trevor

And finally, we have officially made it through round 15 WITHOUT a FEVER!  Days 10 through 14 of each round are full of anxiety as we sit and wait as his counts drop to 0 and we sit in fear of a fever hitting at any minute.  But he has pulled through and counts are on the rise and we are past the scary part!  We now have a whole week off where we can actually leave the house and be in public (kinda).  We will start the next round on July 5th, which leaves us home to enjoy the 4th!  Happy 4th of July!

Sunday, June 10, 2012

Round 14 Chemo & Fever

Sunday, June 10, 2012

Round 14 of chemo went as planned.  We had an extra week off to recover from the sepsis and to allow Drew's surgical would to heal from where his port was removed.  

This round didn't require anesthesia for anything and we were able to see his doctor out at his office close to the house for his exam the day before, so we were able to do a direct admit without having to go through clinic first.  

Normally the first day of chemo is an all day affair, having to be there early for clinic and labs and then waiting around until a bed is ready on the inpatient side.  This way we had labs done at home on Monday, had his appointment for his physical on Tuesday and then Wednesday just waited for them to call us and let us know his bed was ready and then we headed down.  

Drew wanted everyone to come with that day.  Randy decided to go to work, so instead my mom decided to come and we brought Brooke and Dallin with.  Drew wanted Kelsey to come too, but we thought she would just be happier at home with the sitter.  Now that she's walking, it's hard to contain her!  

He was happy as could be to have the whole group with us, which made for a fun trip down, but it still didn't make a difference when it was actually time to start chemo.  He threw a fit!  Did not want to get hooked up!  He screamed and cried and hit and kicked and scratched until he puked.  He is just so done with this whole routine.     

 Drew & Dallin in the playroom.

Drew with one of his Child Life specialists, Heidi.  She always knows where the best toys are hidden!

 Saying goodbye to a couple of his nurses.  We were hoping that this might be our last inpatient stay here at the old hospital before the move.  

Glad to be home altogether and in our own beds!

 Back for blood and platelets.  He took a 2.5 hour nap, so I was able to put together his new lego jeep and tank.  Every piece was the same brownish green color and I had to manage in the dark!

Well we weren't lucky enough to bypass the fever this round and when his counts bottomed out he spiked a fever which landed us in the emergency room.

 Still being silly, fever and all.

 Not feeling so silly anymore.

After starting antibiotics again, his blood pressure started to drop which then landed us back in the PICU, back on meds to support his blood pressure.  

Luckily this time, the fever was short lived and no source of infection was found and he was able to be weaned off of the BP meds fairly quickly.

 Back to being silly, making a gun out of the straw in his apple juice.

Out of the PICU and back up on his regular floor, the oncologist ordered an echocardiogram to take a look at his heart.  Drew gets echos every 6 weeks at this point to monitor his heart and watch for any changes, as one of his chemo meds can have an affect on the heart.  This echo showed some changes in his left ventricular function.  It is still in the normal range, but low normal which is down from last time.  Cardiology came for a consult and said it could be one of two things.  It could certainly be changes from chemo, but it could also be changes from still recovering for such a major bout of sepsis a month ago.  They want to recheck in 4 weeks and see how things look.

Drew & one of his favorite nurses, Brian, being silly.

 Drew loves when Brian in working b/c Brian is good at playing guns in the halls!

Ready to go home!  We got out just days before the entire hospital was moved across the city to the new building.

Drew & his neuro-oncologist Dr. Stewart Goldman

We stopped by clinic on our way out for some bean bag toss in the hall with Dr. Stew.

Saying goodbye to 4 West.  

Yesterday Children's Memorial Hospital closed its doors forever.  We will miss the old hospital and so many memories that we made there.  It will live in our hearts forever and surely never be forgotten.

Next up, Round 15 at the new Ann & Robert H. Lurie Children's Hospital of Chicago.  We knew the new hospital was being built when we started this journey almost exactly a year ago.  In the beginning, I was nervous about the move and having to start all over with getting to know the new hospital.  I was nervous about having to put Drew through all of the changes, when he had become so comfortable with our routine and how things were done.  However, now that the time has come, we don't think it could be happening at a better time.  With Drew being so burnt out with everything, we are excited for the change!  The new hospital will bring a whole new light to this journey and new experiences that we hope will contain enough excitement to carry us through these last 3 rounds.