Daddy's Home ... Caeden's Point of View

I got Mom's iPhone and figured out how to take pictures. Here's Grandpa ...



And Dad. He got home today with a huge cut down his chest. All of the germs crawled out of his heart and he is all better now. He even has a special pillow to hold against his chest when he coughs.

Here's Mimi. She came over today and brought me candy and chocolate cake.

Here's Grandma. She got into the wine again.

And Claire. She started crawling yesterday and everyone made a big deal about it. So what? I can walk backwards, hop on one leg, AND do somersaults and no one says a word.

Dad is taking it easy today. He sits in his chair and walks around a little bit. I can't jump on him, and he can't pick me up, but I sure am glad he is home.

Mended Heart.

We are being held captive at home today. We're gotten 20" of snow so far and it is still falling...
A neighbor came over and used his snow blower to clear our driveway and I think of how nice that was, considering ours was just inside the garage. People are so wonderful.

Downtown, where the hospital is, the roads are clear. Can you believe that? Clear! It's frustrating to think it's business as usual downtown while we are pacing the floors and staring out the windows. If I have one person tell me, "Well, we did need the moisture," I will freak out.

Dr. Parker (Wayne's surgeon) came in to see Wayne this morning and gave him some good news - he gets to come home tomorrow!

Friday.

Wayne is having a good day today. His chest tubes were taken out this morning and he has been able to walk (2-4 laps around the floor) with a cardiac rehab nurse. His color is returning and he was able to eat some cheerios (up until now it has been jello and applesauce).

We're in the middle of a huge snow storm and it has prevented us from going up to see him tonight, but we're hoping for better weather tomorrow afternoon so we can get up there. We're expecting 10-22" of snow ... and looking outside I'd say we've gotten 8" so far.

The ball is rolling with MD Anderson. I talked with a nurse today; they want to check into his insurance (again, I give thanks for Microsoft's insurance) and get his pathology from surgery.

Anyway, just wanted to give an update.

Significant.

This is the first chance I've had to sit and type. I'm sorry you were all left hanging today ... believe me, I heard all about it from many of you! The problem was that I couldn't get WiFi in Wayne's ICU room, hence no postings ....

Our days have been emotional. We're so happy when we see Wayne able to walk a little further than he did the day before. We're thrilled when he says he is not in pain (the drugs are doing a great job of taking the edge off of his incision and both chest tubes). We cheer (silently - we aren't annoyingly loud or anything ...) when another IV comes out.

Wayne's blood pressure was sky high yesterday (the highest topped out at 151/100) and blood sugar was high (192). So they had to put him on an insulin drip to stabilize his blood sugar (totally normal after a trauma like surgery) and gave him some other medication to bring his blood pressure down.

Late today he was brought up to the cardiac unit (room 1008), and is no longer in ICU. His nurse was totally annoying and talked way too much, but other than that, he is happy to be moved because it is more private and quiet.

He has been sleeping most of the time, and will continue to do so while he's on pain medication, but he is slowly coming around and is able to carry on a conversation for 20 minutes or so before needing to rest or zone out for awhile.

We got some awesome news late tonight (I was already home from the hospital and his parents were on their way back). Dr. Hinshaw, Wayne's Oncologist got the initial pathology report back from his surgery. The chemo significantly shrunk the size of the tumor. Significant was her exact word. To have such a response is very surprising, as initially she told us she wasn't expecting to be able to measure results until 3 rounds of chemo.

Obviously we are thrilled. :) Off to drink a glass of wine with Donna and Dave.

We're drinking to "significant" tonight.

Every Reason

Yesterday as I stood over Wayne's bed and watched him sleep, I cried for all the trauma he has gone through. I cried for the long scar that now runs down his chest, for his veins that have already suffered a great amount of damage from the chemo. I cried that there is so much more to come.

And then I think of them.



I think of how Wayne does not feel like this journey is impossible, or even that hard. I think of how he knows that these two are worth fighting for. Are worth the pain, the surgeries, the unknown.


And I know that we have every reason to believe everything is going to be okay. Two really big reasons.


Playing with the kids this morning, and then off to the hospital for the day. I'll post tonight when I get home and let you know how he is doing.

Thank you all for being so interested in our story. Knowing you are out there praying for us and reading our journey makes this so much easier. Knowing we are not alone means everything to us. To all of us.

How you know Wayne is not suffering from neurological problems ...

As the nurses were trying to rouse Wayne from anesthesia they said, "Wayne the operation was a success! You are now a girl!"

His eyes flew open in a split second. ;)

Done.

Forgive the hasty post. I want to get back to Wayne ASAP. 

The surgery was a success. Dr. Parker was able to remove the tumor and re-routed the pulmonary vein so that the tumor could not intrude again.

The surgery took 3 hours and I have already been in to see Wayne. He was "awake" and asked if they got the tumor. He is, of course, completely out of it and will be for another day (at least).

He will be in ICU today and part of tomorrow, then back into a recovery room for 4-6 days. Then, he gets to come home and finish healing. No lifting for 3 months, no driving for a couple of weeks, and no flying for 2 weeks.

Once we hit the 2 week mark, we are off to Houston for a second opinion at MD Anderson. Most likely, he will have multiple rounds of chemo before another surgery (his hip) is scheduled. 

So for now, the first hurdle has been cleared. He passed with flying colors and the immediate danger of the tumor breaking off and causing a stroke is gone. I cannot find the words to express the relief and joy we are all feeling.

Back to hold his hand.

This cancer does not stand a chance. Not a chance.

We Wait.

Wayne is in the O.R.

They got a late start - his surgery started at 11:25 am.... We waited together in the pre-op unit, watching Doctors come and go - watching other patients and hearing their stories through the sheet curtains. They shaved his chest, talked to us about the procedure, what to expect post-op, and how his pain would be managed. 

Wayne was impatient; he loathes waiting. As anxious as he was, he said mostly he was relieved to be moving forward. To get the tumor out. He was not scared. Just brave. 

Dr. Parker is expecting surgery to last 3-4 hours. He is such a great guy - gave Wayne a hardy handshake and me a big hug. It's easy to believe that everything is going to be okay. I ventured to ask how big the tumor was. It's as big as a lemon. Wayne and I just looked at each other like, "What?!" How had we not asked this question before? I was expecting them to say a couple of inches long. Still in shock about that. 

For now we're sitting in the waiting room, waiting for news.

I'll post as soon as I can. I know you are anxious to hear.

Tomorrow

Sorry this is so late being posted. After a ton of messages, I finally got the hint (and time) to post what is happening.

Wayne is in the hospital (Presbyterian St. Lukes) awaiting surgery tomorrow morning at 10:30. Dr. Parker will open Wayne's chest and stop his heart. He's going to tease out the tumor and re-route the pulmonary vein. The surgery should take 3-4 hours to complete. As soon as I have any news I will do my best to post here (I'll have my laptop with me).

Wayne will be in ICU for the remainder of tomorrow and the following day. He'll up and walking by day 2 and hopefully released from the hospital in 4-6 days.

He'll have 2-3 weeks of recovery before he'll be able to function at a reasonable level, but at least he'll be able to be at home, in his own bed, after the first week.

He is in GREAT spirits - you know Wayne. Absolutely ready to get this done, and move onto the next treatment. He is such an inspiration and so strong. I am proud to be his wife. He truly amazes me.

So. As soon as we get some news after surgery tomorrow, I'll post details ...

Thank you for your prayers. It means so much to us.

5 words.

It all started early this morning with a jet-lagged Uncle John entertaining Caeden. Showing him the ropes of the vintage Slinky that the Easter Bunny tucked into his brown basket. (Does that first photo not look like a gritty Urban Outfitters ad?)



We waited for Claire to take her morning nap so that we could go to Mimi's house for brunch. To waste some time, a friendly game of 'get the balloon' was played. And played.




And that's about the time the great idea came to mind. "I must get the peeps."

You know, Peeps. The mushy marshmallow candy that hurts your teeth when you even mutter the name. Peeeeeeeps.

Grandpa and Caeden ate their weight in Peeps today. I am wondering why no one has reminded me to make Dentist appointments? I cannot be trusted to remember. Just so you know.



Something green is in his hand. I suspect it made it sticky. And if I look close, I bet I see green on the sofa, too. You gotta take the good with the bad, people.


Here we all are (missed you so much, Nik!) at Mimi's house. Fun, heart-felt, happy, and full are the five words I chose to describe our day.



My favorite picture of the day. Little girl, if your daddy could have had his heart healed by a touch, by a moment ... he would not be packing for the hospital tonight.

Number Four

Today was the day for Caeden Koop. Today was his birthday* (someday he will forgive us for this small lie). He woke up, all sleepy-eyed, and wandered into the kitchen. "Is today my birthday?" And then, "Can I have a cookie for breakfast?" (He did. With frosting. My teeth just ache thinking about that.)



Here was the big surprise from us and Mimi/Papa. A truck that he can take the girls cruising in. Complete with a working radio (that he wanted nothing to do with).



We had his party at Brunswick Zone - bowling alley/game center paradise. Seth was our party guy and he got Caeden to shake his goove thang' -- super cute. Caeden doesn't do that for just anyone (he can hardly tolerate music) - which, is really the only thing about him that gives me pause if he is really mine or not.


Click on the picture to see the score. Yes, Caeden and I had the same score. I managed to NOT hit a single pin 4 times in a row. I was trying to show Caeden it was okay to miss. (Not really. I just really am a horrible bowler.) It got to the point everyone was cheering for me when I'd hit just a couple. That p*ssed me off, so I promptly bowled a strike. Take that! However, apparently the strike was a fluke and not talent...



The gang was all there. Lindsay, Claire, Mimi, Donna, and Caeden.


Papa, Grandpa, and Jordan. (Lousy picture, but had to document them standing around. Very important to get that shot.)


Opening presents. A construction truck set from Grandpa and Grandma. The other thing was a giant monster truck that now trumps all other toys in his play room.


How old are you, buddy? FOUR!




*Official birthday is Monday the 13th, but since Wayne is going into the hospital that morning, we thought we'd whoop it up today.

Tomorrow ... Easter. With giant baskets full of toys and candy. A lot like today ... Someone remind me to make a dentist appoitment for Caeden.

But you know, he's like the kid whose birthday is on Christmas. You get jipped! "Here is your combined present, lucky you ..."

So, I know he might have a sugar induced high/go into a coma from over-doing it the past couple of days, but I just refuse to combine holidays. Just say no. Is that slogan still around?

Almost Famous

Nothing to write about today except that Claire is almost famous. :)

She's on the Matilda Jane website/blog. How fun!

We're getting ready for Caeden's birthday party tomorrow and Easter. Going to enjoy every minute and take a lot of pictures...

I came across a mega blog post about Easter traditions. Very cool. You can check it out here.

Happy Easter everyone!

Colors of the Rainbow ... and Camouflage

Today we dyed Easter eggs.


Caeden, on the other hand, dyed Easter eggs. And then dyed them again. And again.
I fear if I hide some of these outside, we'll never find them as they will blend into the surrounding landscape so well. Look at the one beside the yellow. Is that not the truest camo color you've ever seen (on an egg)?? :)



Here's Caeden, having a ball... "This is the best Easter EVER," he says.


I heart Lindsay. Such a creative girl.



And this one. Too young for eggs, but this girl LOOKS like spring, doesn't she?!


She's getting very close to crawling. Mom left me a note the other day, "Val, do you have a baby gate?" -- I remember when we waited a tad too much with Caeden, and he fell down 3 stairs before I caught him by his leg. Talk about a horrible moment. Yes, I must get a baby gate up, but who has time when there is dress up to be played??

Food

Seems like I have been spending a lot of time talking about food. I guess because when Wayne went through chemo, he didn't eat, couldn't stand the smell, and didn't want anything to do with food. So I quit cooking. Thankfully, we have friends who brought food, otherwise I would have fed Caeden cereal every night without fail.

So this week Wayne is able to eat. And is hungry. And I find myself rusty. What is there to eat? If it can't be popped into the toaster or microwave, you are out of luck. Oh, wait. There's always cereal ...

The Schwann man just stopped by and caught me at my most vulnerable time (an ankle biter whining about no food in the house ... what's a 4 year old to do?) so I just ordered a lot of food. Our freezer is unable to accomodate one more thing. I am not kidding.

So, to all of you coming to visit in the upcoming month, if you are hungry, look towards frozen paradise where chicken fingers, pizza, ice cream sandwiches, pasta and veggies all await you.

And the picture? I found it on this blog: Elizabeth K. Fresh fruit and cheese are such good ideas for snacks - and the fact that I found it inspiring tells you just how far I have strayed from the grocery store ....

*** Edited to add: Does anyone need any stinkin' Schwann's food?

Look what just arrived -- a little piece of home! ...Thank you Randy & Mary!! You have saved us from chicken fingers. Bless your hearts.

Dear Mrs. Burns' Class

I came down the stairs to hear Wayne laughing. I thought he was watching "Family Guy" on t.v.
I hear him laugh again. And a few minutes later, again.

I turn the corner and see him, reading all your cards - spread out all over the kitchen island - one after another after another.

More laughing.

He loved them all - and I happened to catch him laughing hard at one card that said, "Happy St. Patrick's Day. I know this is late, who cares." -- You know who you are, you clever child, you. :)

All of the thought you all put into the cards is touching. We look at them often and will keep them forever. Thank you for being such compassionate, witty, and caring people. Your teacher and parents should be proud. I know they are.

To take time out of your day to make Wayne feel good, especially when you have never met him, is something we will never forget. Thank you, thank you.

Sincerely,

Val & Wayne Koop

P.S. If you want to get on your teacher's good side, talk to her about Elvis. She adores him.

Quality Time

We braved rush hour traffic and went downtown to grab Lindsay and Jordan (love their location!) for some pizza. We literally walked around their building, walked across the street, and ta-da! We were at the best pizza place in Denver. Marco's Coal Fired Pizza. Since we have small children, it is a given that we eat wayyy early. In fact, we were ready for dinner during happy hour, so we (excluding Wayne) drank house red wine for $5 and thought we were pretty thrifty. And, no, I did not drink that glass in about 5 seconds flat.

It was 7 seconds.

A little back story: When I was pregnant with Caeden, I was craving NYC pizza. So, we hopped on a plane and spent the weekend in New York. It was heaven. Ahhh, the days before children when we had disposable income to do that sort of thing ...

So, I feel qualified to say this pizza was THAT good. Thin, awesome cheese (but not too much), and great toppings. Going back soon.






Plus, how cute is this idea? They came out with a plate full of pizza dough for Caeden to play with.


It is safe to say he had a good time.

There's my sister, Jordan, and Wayne all full and happy.


And best for last: quality family time, sugar.

P.S. I swear Claire was not left at home alone. I have no idea why she did not appear in any of the pictures. Strange, illusive baby...

Morning ... without anyone around

What do we do when we have nowhere to go on a Monday morning? No one coming over? We play. We do not clean the house. We make bigger messes. The playroom is calling ...

We stare at baby Claire and wonder when she is going to get her first tooth .... (Notice her Microsoft onsie. We love Microsoft. A lot.)


We make our own cement trucks, even though there is a small fortune of high-tech cement trucks waiting on the sidelines...


Just when you thought it was all play and no work ... I introduce to you "take your son to the office down the hall day."

Caeden is usually in some state of undress. This picture just happens to be right after he got out of the bath tub, so at least he is clean. I have my standards, you know.

Weekend Update

Caeden was invited to a birthday party at McDonalds on Saturday. The kids had a blast, and so did we. It was great to get out of the house and do something social.

Have you ever noticed those red DVD rental boxes inside McD's? I hadn't (probably because we have not been inside a McDonalds in years and years). They were so busy! Who would have thought to go to a fast food restaurant to rent a movie? Apparently a lot of people.

The new Houston's restaurant opened this weekend in Cherry Creek. We're dropping off Caeden at school and heading there for lunch. Trying to get Wayne to eat as much as possible before surgery and another round of chemo. He continues to drop weight while eating as much as he can.

I've got some more pictures to post. Look for another posting here soon ...

P.S. Before you judge me on the photo quality ("Isn't Val taking a photography class for pete's sake?!") - the pictures were taken on my beloved iPhone. Cut me some slack, people.

Back to Regular Programming

This boy has a sweet tooth unlike anyone I have ever seen. The cupcake came from a new bakery located downtown. The chocolate frosting was amazing (or so I heard). Caeden Koop, I love you!

I cannot get over her. I adore her. Want to eat her up like Caeden and cupcakes.


Soooo.

We have a week before Wayne has heart surgery. That means, a week filled with possibilities:

We have Easter ... and Caeden's 4th birthday party. We have spring (with snow, but still...), we have a week with no doctor's appointments. We have each other.

For the next week, there will be no cancer talk. Just pictures of us doing our thing. Pictures of family, of fun, of everyday stuff. This week, we are back to regular programming.

A Great Day

Mackal (Wayne's boss) & Randy (Wayne's colleague) flew into Denver this afternoon to check up/check in on him. We've been looking forward to their visit all week, and this afternoon we picked them up from the airport and went to lunch. (Any Houston's fans out there? We went to Cherry Creek Grill, which is in the same group as Houston's. Gotta love their salads and veggies!)

Anyway, lunch was fantastic. It was wonderful to finally meet Mack. Not to embarrass you Mack, but you are just a wonderful person! Your laugh is contagious and it felt great!

Randy has been traveling alot lately and still found the time to come over today to see Wayne. Thanks for doing that, Randy. It was great to see you and catch up on your family.

We have great news!!!!!

The spot in Wayne's brain does not appear to be cancer. It is thought to be a blood vessel, and does not look suspicious. Isn't that amazing news?!

Second, Dr. Hinshaw reported that Wayne's CT of his chest yielded these results: The tumors have stabilized/shown slight improvement after just 1 round of chemo!!!!!

The medicine is working. Your prayers are working. Working!

We also have an official diagnosis. It is not osteosarcoma like we thought. It is Chondrosarcoma.
Mesenchymal chondrosarcoma to be exact. It is cancer of the cartilage. Mesenchyme are embryonic cells from which cartilage are formed. Chondrosarcoma is a malignant tumor originating from connective tissue. This really doesn't change Wayne's chemotherapy or course of treatment - as the plan is to see how well he responds to chemo in order to operate. So far so good because he is responding!

Back on Monday.

You know you wanted to see them ...

These aren't even his favorite pair, but he wears them enough that I feel like this is an accurate portrayal of what he wears these days (for those of you who conference call with him - sorry for the visual...)

Today Wayne had another MRI on his head, and a CT scan of his chest. We'll know the results tomorrow (we are looking for the spot in his head to stay the same size or decrease, as this might indicate a blood clot over a tumor).

Also, his open heart surgery has been scheduled for Tuesday, April 14th. He will be admitted into the hospital on Monday the 13th. This is a huge bummer because it's Caeden's 4th birthday, but we are glad to be moving forward and getting him into surgery.

For those of you who don't know, he has a large nodule on his lung that has grown a finger and has snaked it's way into his pulmonary valve and into his left atrium. Click here to see a picture of what I'm talking about. His surgeon, Dr. Parker at Presbyterian St. Lukes Hospital, is confident that he can remove the tumor; osteosarcoma tumors are "smoother" than other types of cancer, and are easier to remove via surgery.

His recovery time in the hospital is 5-7 days, and then he'll get to come home again and either start another round of chemo, or have the mass (if it turns out not to be a clot) removed from his brain.

We'll have more details after his appointment with Dr. Hinshaw (his Oncologist) tomorrow.

testing (for bigger pictures)

Taking It All Off

{The scar on his head is not from brain surgery. Wayne (and his entire family) was in a car accident when he was a child.}

Imitation is the best form of flattery.

Just when you think he is too busy playing to notice anything ... I realize he notices everything.

"Smile Grandpa and Grandma!"
"Gooooooood."
"This picture is awesome!"



Remind you of anyone? :)

Just Us.

You can tell we had an awesome weekend from the last post. We found time to sneak in some family pictures, too. As always, you can click on the pictures to get a better look.

Wayne's got a busy week. Blood work today, and a CT scan (lungs/heart) and MRI (for spot in his head) on Thursday to see if there has been any changes in 3 weeks. We know he has heart surgery next week, but we just aren't sure of the date yet (pending CT).

I feel like this week is the calm before the storm.

Wayne is busy working today, and Dave and Donna (Wayne's parents) are here until tomorrow (they came for a long weekend). I was hoping to do something fun with them, but we've got more snow today, so it just might be a pajama day.

By now, you know how fond we are of pajama days...

They Brought Medicine

They are the gang from Sturgis. The ones that Wayne grew up with - the ones that helped each other all survive their teen years (despite the odds - you should hear their stories!)

They know Wayne from before. Before Wayne knew who he was going to be. To become. They knew him then.

They swooped in, bringing a flurry of old stories, new stories, laughter, a ton of bull ... and with that, an afternoon of basketball to watch together.

If you would have been here, you would have seen Rick gesturing as he told a story to get everyone laughing. You'd have noticed Randy's tried and true "Spam" t-shirt. You would have seen Jeremy's wife and kids on his blackberry, you'd have seen Tom and Claire flirting. You'd have noticed that Shawn snuck out to call Tina - I suspect because he just missed her. You'd see Jennie, an old "cruising" friend of Wayne's, walk through the door and how wide Wayne smiled to see her. You would have heard Mike talking about the probability that none of them would lose any weight (they are competing in a weight loss challenge).

You would have heard more laughing. More stories. More, more, more.

You wouldn't have wanted to interrupt one minute of their day, because they were in their own world, and it was a world that provided a wellness for Wayne that was better than any medicine he took that day.

They.