Thursday, May 27, 2010

A Brand New Day

If you have read the last few posts, you'll read how we have started to realize what wonderful news we got about Kenny's tumor on May 6.

I just heard this song by Joshua Radin and really, it's how I feel now that this wonderful news is sinking in...enjoy this part of the song:

It's a brand new day
The sun is shinning

It's a brand new day

For the first time

In such a long, long time

I know

I'll be ok

Most kind of stories

Save the best part for last

Most stories have a hero who finds
You make your past your past

Ya You make make your past your past

It's a brand new day

The sun is shining

It's a brand new day

For the first time

In such a long long time

I know

I'll be ok

This cycle never ends

Gotta fall in order to mend

And it's a brand new day

It's a brand new day

For the first time

In such a long long time

I know

I'll be ok

******* is a brand new day. The bad dream is over. Life is good.

Warm Days

Wednesday, May 26, 2010

American Brain Tumor Association 5K Run/Walk

May 22 we had the opportunity to participate with Team Survivor in the American Brain Tumor Association 5K Run/Walk. Team Survivor is made up of the Northwestern Brain Tumor Support Group friends and families (group picture above). It was a wonderful event and our team was the top fundraiser for the event.

It feels wonderful to be at a place in our lives that we can begin to give back to the people that helped us along our way when Kenny was in the midst of his medical journey. We want Charlie to understand that giving back is such an important part of life.

The event was held at Solider Field and Kenny, Charlie and I were joined by my Mom and our friend Julie and Ted met us there to do the run. We had a great time walking along the lake shore and the only thing that could have made it better was for the fog to lift.

Charlie ready to walk...or ride. He has Kenny's "Survivor" shirt on the back of his seat.

Three generations...Grammy, Mommy and Charlie.

The boys.

Family photo

Julie and I

Starting the walk...

They had signs along the route that were very cool.

There is Solider Field in the fog...

Friday, May 21, 2010

A Boy and His "Actor"

Charlie recently learned to say "actor" (tractor). He thinks anything that cuts the grass or construction equipment is a tractor. Kenny was so proud of him for saying it, he got him one of his own. Charlie even wanted to sleep with it the first night. Instead, he settled on blowing it kisses to say good night to it.

Wednesday, May 19, 2010

Chicago Half Marathon for NBTI

The early morning of May 16, 2010, we found ourselves in Chicago again to cheer Ted on as he ran a half marathon that benefitted Northwestern Brain Tumor Institute. Watching the runners come in from the 10K and the Half Marathon was amazing. I think I had a few tears. And just as Ted thought, we saw him at about the 2 hour mark. He ran by and hugged us and I was so proud of him. What a great thing to do and we helped him raise so much money for a place that truly saved Kenny's life. To those that donated - THANK YOU so much!!

We hung around this area while we waited for Ted to approach the finish line...

There's Ted - third person back in black.

And that was about the moment Ted was crossing the finish line...

Charlie finally decided to hold his sign.

Charlie and his buddy.

You are Number 1, Uncle Ted.

Kenny and I had voluteered to work at the NBTI tent and just after we got there, a man walked up in a stocking hat. He had obviously just run the race, but I knew he looked familiar. He introduced himself as a resident in Neurosurgery at Northwestern. My eyes got big and I said "we know you." He looked at me and then at Kenny and smiled as his eyes got big too. It was Dr. Smith. A wonderful guy, someone who Kenny loved to joke with and someone who was truly there to listen to us during our hospital experience.

Dr. Smith checked Kenny in on August 28, 2008, the night before his tumor was resected. When Kenny met him, he asked him if he was the Evil Dr. Smith from Lost in Space. Poor guy didn't know who that was. Kenny started explaining it to him and he probably thought Kenny was a little bit off, but really Kenny was being his usual funny self. That was one of those moments that week that I knew Kenny was really in there.

I know he was in the operating room with him at points during his surgery. I know that he is training with our awesome neurosurgeon. I HOPE someday he will be on staff at Northwestern.

He was there on the night of September 9, 2008, when we readmitted Kenny through the ER because of his CSF leak. I was sitting in the ER room by myself while they had Kenny up in CT. Dr. Smith walked in and said "I was hoping it wasn't you. What happened?" We talked about the leak and what would be done. He helped push things along so we could get out of the ER and up the the 9th floor. He let me stay in the NeuroICU room that night while they tried to do a bedside procedure to drain the fluid.

During that 12 day stay, he not only did the usual resident things, but also visited with me more that once, on slow afternoons, he would wander in to chat about life, ask about Charlie and see if we had questions about Kenny. He cared and he listened and I was always grateful for that. One thing that stuck with me was that he said "In a year, this will just seem like a bad dream." I was having a hard afternoon, missing my Charlie and just wanting to bring Kenny home.

When we saw him at the race, I was so grateful to be able to truly thank him for all that he did. He was surprised when Kenny and I told him we talk about him sometimes. He made an impact on our lives. He told Kenny that he really did look amazing and we reported on our recent news of the tumor shrinking. He was thrilled. I immediately remembered him telling me that this will all seem like a bad dream. It kind of did at that moment.

Kenny with Dr. Smith

A bit later we ran into the Gamma Knife nurses, Amy and Debbie, that helped us through that day, one year ago. They were awesome, loved seeing Charlie in person and loved hearing how well Kenny was doing.
(Side note: The next day we had a visit with Kenny's endocrinologist and she also commented about how far Kenny has come and how wonderful he is doing. It's SO nice to hear that from those people that saw him in the hospital, that know how bad it was and those that appreciate how normal life is now!)
On the way back to the car, we stopped at Millennium Park and took the classic Chicago shots...

Grammy and Charlie

Just the three of us

Tuesday, May 18, 2010

Shrinking Brains

Charlie looking over Kenny shoulder at the NBTI race on May 16, 2010.

May 6, 2010, we got some of the best news we have heard yet in this medical adventure. One year, to the date, post Gamma Knife radiation treatment, the tumor is shrinking. Specifically, the cyst on the tumor is shrinking. The news was delivered by a resident who kindly showed us the MRIs from August 29, 2008 vs November 2009 vs May 2010. That tumor was a big one back in August 2008.

I don't think we really realized what the resident said. We didn't scream or cry...just smiled in amazement. We saw Dr. C a bit later and we talked about life, how Kenny was feeling and he said something like, "No matter how many ups and downs life may bring, I hope that I can always bring you good news. You know you can always come here and we will enjoy seeing you." We discussed how wonderful it is that the tumor is shrinking. Kenny will have another MRI in 6 months and if that goes well, he may be moving on to once a year then. I told Dr. C that one year intervals scares me, and I know we will talk more about it in November. One year is the schedule Kenny was on when that tumor grew, but I also have to remember he's now had some good radiation treatment that is killing all those cells, unlike before.

It took a long time for the news to really sink in. Life is getting a lot more normal now. It's still our new normal...but normal to us now. Lots of time to enjoy the wonderful moments in raising a little man. Lots to time to realize what really matters. We are so grateful!

Saturday, May 8, 2010

Lincoln Park Zoo

We love to make the most of our time in Chicago so we met up with Joan and the girls to tour the Lincoln Park Zoo with Charlie. Kenny and I hadn't been there in several years and this was Charlie's first trip. We weren't that excited about the zoo, but it was a good size for the few hours we had in the afternoon. Maybe next time we will try another zoo. It was great to see Joan and the girls though and so great to see Charlie playing with his cousins.

Sleepy lions.

Charlie pointing out a "an" (plane).

Charlie doing his monkey impression in the monkey house.

Snack break.

Where are the animals?

The adults had a good laugh since we saw so many animals going to the bathroom, but this guy...he almost caught a bunny running through his area.

Anna was SO sweet with Charlie and he listened to her and held hands nicely. Hmmm...can I borrow her?

Friday, May 7, 2010

Chicago Avenue Park

Uncle Ted and I took Charlie over to this park during Kenny's MRI. Charlie absolutely loves to be outside!! Slides and running through the equipment is just the best!

A Story of a Bis

Six months have passed us by again and the beginning of May brought us to Chicago so that Kenny could get another MRI. Charlie and I spent a little while on Michigan Avenue doing some shopping before meeting up with Uncle Ted to play at the park while Daddy was getting his MRI. Charlie loves watching the traffic on Michigan Avenue. This trip was especially exciting since he recently learned to say bus..."bis" and there are alot of them on Michigan Avenue.

I thought I could get a few nice pictures of Charlie by the tulips, but he wasn't interested...

He smiles for the bis...but not for Mommy!

Mommy and Charlie. A nice lady waiting for the same store to open with us offered to take it. Charlie attracts the ladies!

This is Charlie...staring at the buses!

Charlie showing me his own bus that he brought with him.

Calling Daddy to tell him about the "bis"