2 Years...

June 2010

Two years ago our little family began this adventure into the brain tumor world and our lives were changed. Some days, it seems like it all just happened yesterday. Sometimes, I find myself missing Chicago and going to appointments and the comfort of the hospital and staff. Not that we mind not going as often, but that it has become such a part of who we are, it feels odd, in a way, when we have a big gap between visits. At the same time, we are thankful for those gaps because they symbolize success and health and progress. The days leading up to this anniversary were so much better than last year...last year, it was hard...the remembering everything that was going on. I still remember, we still talk about it, but it's easier this year. We have more peace with all of it and our lives are moving forward in a positive, wonderful direction. Not everything is perfect...in fact, some things are far from it, but we are happy and that is more important than anything else.


We will always celebrate these moments, each year, because they deserve to be celebrated. Kenny deserves to be celebrated. And always, on August 29, we spend the day thinking of our Dr. C and all of the work he did that day, to make Kenny well again.

Father's Day Part 2

On Father's Day (and Grandma and Grandpa's 40th Anniversary), we went to...wait....can you guess....another car show! This time in Oak Brook. Kenny's family has always gone to it and for Kenny, it is a sort of tradition, so we try to go.

Uncle Jim showed his car, as usual, so Kenny hopped the rope and got a picture with it.

And then opened the door and plopped Charlie down in it. Good thing we know the guy who owns it!

Father's Day Part 1

The day before Father's Day we ventured into Wisconsin with Nimmy (Charlie's name for Grammy) and Pops to the Wisconsin Auto Museum. Pops and Kenny can think of no better way to spend a day than exploring cars, so since they are the Fathers....we went with. It was without very many other patrons, which proved to be good for our little almost two year old. He's not quite clear about the behavior one should have in a museum...but we are working on it.

On the way up there, Charlie was in heaven watching the "actors" (tractors), "tocos" (motorcycles) and "ans" (planes) as we traveled through the back roads of Wisconsin.

Off to explore with Pops and Daddy.

Watching the wonderful model train.

Nimmy trying to sneak another hug in. Train watching is serious business Nimmy!

Pops explaining the fine art of model trains.

This picture won't load right, but it's a truck Nash, which Kenny has never seen and even more interesting is it says Metzler on it...one of Kenny's cousin's last names.

"Mama, Nimmy, are you coming with us?"

Learning with Nimmy and Pops.

Working on an engine.

We ended the day down the street the Mineshaft restaurant - Wisconsin's largest. It was yummy!

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.

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

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!

January Fun

Some months it's easier to capture in one post highlighting some details of our everyday life. January is one of those months...

Charlie and Penelope making music at Jack's birthday party.

A bedtime hug from Daddy.

A year and a half ago, as I traveled to Northwestern to be with Kenny, I drove by Heaven on Seven, a cajun restaurant, each day. Kenny loves cajun food and I would bribe him with a visit there sometime when he was released from the hospital. It might have taken 17 months, but we finally made it there. We both had the day off from work and a doctor's appointment and support group meeting brought us to Chicago that day, so we enjoyed a lunch at Heaven on Seven finally. It was heavenly too! We also did a little shopping and relaxing in the afternoon as we read and drank coffee. A perfect day for a date!

Kenny with his heavenly food and some dangerous looking hot sauce!



How can you resist that face?

Charlie with an olive on his finger.

The kid loves food and eats things that I never would, even as an adult. It's wonderful!

Thankful

STABLE!!

Our favorite word to hear come out of the neurosurgon's mouth.

I cried this time.

We are just so thankful for his medical knowledge and grateful to have connected with him for Kenny's care.

Kenny told him so.

He acts like it's nothing, so humble.

But, really, it's something.

He recently co-founded the Northwestern Brain Tumor Institute (http://www.braintumorinstitute.org/).

He really is great.

And so is Kenny...because of him.

Kenny on his way in to get an MRI.

They put these signs up around Northwestern and I couldn't help but take a picture...the words are so true and exactly what this place provides and what so many others forget.

4 Years!!

Kenny scheduled a doctor appointment to find out the results of his latest MRI the day after our 4th wedding anniversary. I thought it was a great excuse to stay in the city the night before and enjoy a nice dinner out and some time without Charlie. We don't do things like this normally, but hey, I think we deserved it after the last 14 months we've had!

We couldn't decide where to eat, asked several people and then a few nights before we went down there, I was searching restaurants near our hotel and nothing look interesting. Then I found the restaurant at the top of the John Hancock Building...and the menu looked good, but on the side, they had a note that said if you order off the Chef's Selection Menu for the month, 10% of the meal cost will go to a charity of their choice. I clicked on a link to see the list of charity's and November was The American Brain Tumor Association. Well, I guess God was trying to tell us where to have dinner and of course that's where we went.

We got there early to have a drink and watch the sunset...beautiful. Kenny was a little freaked out at the height at first, but soon got over it. He said it was just weird to be so close to glass so far in the air. I love it!

And of course in looking at the traffic on Michigan Avenue below and picking out buildings, we found our beloved Northwestern, just blocks away. We love that place and the doctors and nurses so much for all of the wonderful care we got. It makes you realize, how lucky we are to live so close to amazing places like that.

We had a great time, slept for longer than we knew possible and can't wait to do it again sometime!

Halloween 2009

We had a great time celebrating Halloween with our book group friends this year and all of the kids. And there are ALOT of kids now. Marci and Pete have a great neighborhood to wander through and the kids had a great time. Charlie was our little blue monster and really did well showing off his walking skills. Once we ate dinner and the kids were playing, he really didn't know what to do -- play with the big kids or play with the babies. Oh, and he and Gwen refused the Halloween picture of all the kids -- 1 year olds!

Touch a Truck

October is such a busy month in our house!! Touch a Truck is a great event put on locally and they had some pretty awesome stuff there this year. Flight for Life arrived and Charlie loves this helicopter he got for his birthday, so seeing one live left him in awe. Again, he spent a lot of time pointing and saying "tuck." He's definately got the car gene in him.

Pumpkin Picking

Pumpkin Picking.

A favorite event in the Friedrich house.

Something about it is just fun and makes it feel like fall, regardless of the weather we may or may not be having.

And this year...it's extra fun because Charlie is a wee bit older and not that he understands it yet, but he's getting closer to understanding it.

We found a great place near us to go last year and decide to revisit it this year.

Last year, pumpking picking was a great event for the three of us, as it was one of the first outings we took with Kenny post surgeries and he had the energy to get around for the few hours we were there.

This year, it brought back lots of memories, but we made them good ones because Kenny is here this year, able to carry little Charlie around.

We are sure next year will be even better!!