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? :)
3.31.2009
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? :)
3.30.2009
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...
3.29.2009
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.
3.26.2009
Humbled & Thankful
Here are Wayne and Caeden playing Doctor. The first thing Caeden wanted to do was listen to Wayne's lungs and heart (he knows the "cancer germs" are in there).
Claire with her first dolly - Baby Stella.
Watching Caeden play ...Over the past few weeks Wayne has received cards, emails, phone calls, texts, and care packages in the mail. We have received dinners and lunches made by friends and friends - of - friends who have been so thoughtful and kind.
We are absolutely humbled by the outpouring of generosity and support we have and continue to receive. There are not words for the way we feel each time someone reaches out to us. It is the love and support that keeps us going - giving us strength (well, that and wheat grass ...).
The above pictures were taken yesterday, as we unwrapped a huge care package from his friends at Microsoft. It is the first time I have had my whits about me to take pictures.
Here is a link to pictures of my friends in Kansas drawing pictures for Caeden and Claire. (I wish I had taken pictures of them unwrapping them!)
The generosity of many has given us the opportunity to hire help for the kids as Wayne is in and out of the hospital in the month of April. To be able to be by his side while he recovers from heart surgery and 2 more rounds of chemo means the world to me - to us.
And the prayers. All of your prayers and thoughts are so appreciated. Thank you, thank you.
We love you all. Thank you for everything - and know that Wayne is one hell of a fighter. Thank you for helping us fight.
Our Love,
Wayne, Val, Caeden and Claire
3.24.2009
Hair Watch: Day 10
Wayne with a full head of hair. I'd love to comment on all the gray, but I'm afraid of what he'd have to say about mine (Not that I have any, mind you).
If we were in an office environment, I am sure there would be a pool going about when he won't have it anymore. But, since we're not, we've come up with Wayne: The Hair Watch. A daily picture of "will he or won't he have it today?"
If you're really lucky, tomorrow you'll see his pajama pants, too.
Grass.
Wheat grass. For 1.49, you too, can drink little green shots. From the extensive list of health benefits, I think I might start drinking them too. (The Ensure is just another item Wayne drinks. I'm using it for a prop since the wheat grass looked lonely on the fridge shelf).
I took the above picture with my iPhone, so click on the picture to enlarge it to read the list. (I know we are a Microsoft family, please excuse my total adoration for my iPhone. I just love this little piece of techno-wonder.) Trust me, the list is impressive!
{In other Non-Wayne News}
This is for the grandparents:
Claire had her 9 month appt. this morning. She's an itty bitty! 17 pounds and 27 inches. She's in the 15th percentile for both. She's healthy and took her shots like a champ.
3.23.2009
Settling In
We are getting used to our new reality. We can talk about "it" without crying or avoiding each others eye contact.
Today Wayne had a great day. He wanted to work, he climbed the stairs to help me with the kids during the time of night all us parents know as the "witching hour," we sat at the table tonight happily eating hummus and chit chatting about stuff.
We are settling in.
We've got another week or two before his heart surgery, and then all of April will be about recovering, more chemo, recovering, more chemo ...
So, I'm trying to think of fun things that we can do, that wouldn't take too much out of him. Maybe a trip to the mountains?
It was windy all weekend, so we didn't get pictures taken like I had hoped. However, I am feeling like pulling out the camera, so look for pictures soon (blogs without pictures can be so boring - maybe you would all like to see Wayne's rotation of pajama pants?)
He had another appt today (every MWF) to check his coumadin levels (blood thinner) and everything is looking good. Wayne was researching nutrition today - trying to come up with things that will help his immune system. I offered organic fruit smoothies (thinking of you, Paula), but he is jumping into the wheatgrass arena.
He just walked in, and I said I was blogging, and he said, "it just feels good to feel normal."
Couldn't have said it better.
Today Wayne had a great day. He wanted to work, he climbed the stairs to help me with the kids during the time of night all us parents know as the "witching hour," we sat at the table tonight happily eating hummus and chit chatting about stuff.
We are settling in.
We've got another week or two before his heart surgery, and then all of April will be about recovering, more chemo, recovering, more chemo ...
So, I'm trying to think of fun things that we can do, that wouldn't take too much out of him. Maybe a trip to the mountains?
It was windy all weekend, so we didn't get pictures taken like I had hoped. However, I am feeling like pulling out the camera, so look for pictures soon (blogs without pictures can be so boring - maybe you would all like to see Wayne's rotation of pajama pants?)
He had another appt today (every MWF) to check his coumadin levels (blood thinner) and everything is looking good. Wayne was researching nutrition today - trying to come up with things that will help his immune system. I offered organic fruit smoothies (thinking of you, Paula), but he is jumping into the wheatgrass arena.
He just walked in, and I said I was blogging, and he said, "it just feels good to feel normal."
Couldn't have said it better.
3.20.2009
First Outpatient Visit
Wayne will go to Dr. Hinshaw's office every MWF while he's under her care. Today was his first appt.
*His white blood cell count has not dropped yet, but it will over the weekend. Days 10-14 will be his lowest (meaning he is more prone to infections and tiredness).
*He has lost 10 pounds in one week.
*He feels better today than he has in 2 weeks.
*The MRI on his head and CT on his chest will be done before his heart surgery (which will be scheduled the week of April 6th).
*We are expecting 70 degree weather this weekend, so we'll be going for lots of walks and I'll be taking lots of pictures of him and the kids.
More on Monday ...
*His white blood cell count has not dropped yet, but it will over the weekend. Days 10-14 will be his lowest (meaning he is more prone to infections and tiredness).
*He has lost 10 pounds in one week.
*He feels better today than he has in 2 weeks.
*The MRI on his head and CT on his chest will be done before his heart surgery (which will be scheduled the week of April 6th).
*We are expecting 70 degree weather this weekend, so we'll be going for lots of walks and I'll be taking lots of pictures of him and the kids.
More on Monday ...
Now and Then
You know how I said that from here on out everything was going to be "before and after?"
*I remember when I used to drive off the freeway exit to go home, I'd always glance at LifeTime Fitness (the gym we joined when Claire was 2 months old because I was having a fit that the baby weight hadn't come off yet), and feel guilty that I hardly ever went.
Now, all I see is Parker Adventist Hospital, right beside the gym. I see the building that told us that Wayne had bigger problems than pneumonia. Now I see the Chick-fil-a restaurant beside it that I used to run and get Wayne grilled chicken sandwiches when he couldn't find something on the hospital menu that sounded decent.
*I remember when I used to get so annoyed when Wayne snored at night. I'd poke him, I'd tap him, I'd sigh really loud, on accident - of course, to get him to stop making noise.
Now, I lay in bed unable to close my eyes because I think I can hear better with my eyes open ... I listen for his snores, for his noises, to tell me that he is asleep, and not nauseated or in pain.
*I remember looking at the kids many times for signs of "me." - Caeden has my eyes, Claire has my nose, etc.
Now, I look at the kids for Wayne. When Wayne was in the hospital, I was home one night watching a cartoon with Caeden before he went to bed. He was snuggled into me and I was playing with his hair ... and I thought, "You have your dad's hair. And look at those lips. You definitely have your dad's lips ..." The sentiment being that when I can't hold Wayne, I can hold them and feel him.
*I remember when I used to bad-mouth fast food. McDonalds? Not a good idea.
Now, I embrace whatever Wayne wants to eat. Today he ate 6 chicken nuggets (over a time span of 40 minutes, but still! Progress!) and I happily ate a cheeseburger and fries beside him.
*I remember when his co-workers were mostly just names to me. Wayne would tell me stories about people at work, and I would imagine what they were like.
Now, I know. The people at Microsoft are kind. Thoughtful. Compassionate. Amazing. When he talks about people now, I don't imagine faces, I see hearts. You all have no idea what your emails, phone calls, and other communications with Wayne mean to him. To us. You keep him smiling, you keep him at ease. Thank you. Thank you for being such wonderful friends. He is truly blessed to have all of you in his life.
*I remember when I used to drive off the freeway exit to go home, I'd always glance at LifeTime Fitness (the gym we joined when Claire was 2 months old because I was having a fit that the baby weight hadn't come off yet), and feel guilty that I hardly ever went.
Now, all I see is Parker Adventist Hospital, right beside the gym. I see the building that told us that Wayne had bigger problems than pneumonia. Now I see the Chick-fil-a restaurant beside it that I used to run and get Wayne grilled chicken sandwiches when he couldn't find something on the hospital menu that sounded decent.
*I remember when I used to get so annoyed when Wayne snored at night. I'd poke him, I'd tap him, I'd sigh really loud, on accident - of course, to get him to stop making noise.
Now, I lay in bed unable to close my eyes because I think I can hear better with my eyes open ... I listen for his snores, for his noises, to tell me that he is asleep, and not nauseated or in pain.
*I remember looking at the kids many times for signs of "me." - Caeden has my eyes, Claire has my nose, etc.
Now, I look at the kids for Wayne. When Wayne was in the hospital, I was home one night watching a cartoon with Caeden before he went to bed. He was snuggled into me and I was playing with his hair ... and I thought, "You have your dad's hair. And look at those lips. You definitely have your dad's lips ..." The sentiment being that when I can't hold Wayne, I can hold them and feel him.
*I remember when I used to bad-mouth fast food. McDonalds? Not a good idea.
Now, I embrace whatever Wayne wants to eat. Today he ate 6 chicken nuggets (over a time span of 40 minutes, but still! Progress!) and I happily ate a cheeseburger and fries beside him.
*I remember when his co-workers were mostly just names to me. Wayne would tell me stories about people at work, and I would imagine what they were like.
Now, I know. The people at Microsoft are kind. Thoughtful. Compassionate. Amazing. When he talks about people now, I don't imagine faces, I see hearts. You all have no idea what your emails, phone calls, and other communications with Wayne mean to him. To us. You keep him smiling, you keep him at ease. Thank you. Thank you for being such wonderful friends. He is truly blessed to have all of you in his life.
3.19.2009
Today
Today:
1. Wayne tried hard to eat. After a day of trying, he got 1/2 of an Ensure shake down, a couple of bites of chicken noodle soup, and some fruit.
2. Tried to work but nausea over took most of his day.
3. Slept.
4. Held Claire.
5. Watched TV with Caeden.
6. Read this awesome post.
Tomorrow he has his first out patient Doctor visit. Hopefully the medication they start will help him navigate in his world a bit better. We are hopeful he will be recovering from this wicked round of chemo and will be headed into heart surgery soon.
1. Wayne tried hard to eat. After a day of trying, he got 1/2 of an Ensure shake down, a couple of bites of chicken noodle soup, and some fruit.
2. Tried to work but nausea over took most of his day.
3. Slept.
4. Held Claire.
5. Watched TV with Caeden.
6. Read this awesome post.
Tomorrow he has his first out patient Doctor visit. Hopefully the medication they start will help him navigate in his world a bit better. We are hopeful he will be recovering from this wicked round of chemo and will be headed into heart surgery soon.
3.18.2009
Welcome Home
He's home. Sleeping, and trying hard to eat something. Anything. Please?!
The mood of the house has totally changed. Everyone is smiling and talking and loving that Wayne is here with us.
Welcome home, honey. Those pajama pants look mighty fine on you. ;)
3.17.2009
Day 4
Chemo comes in cycles. Wayne's cycles last 3 weeks.
The first 4 days are chemo. I am not going to even talk about the side effects that he is enduring - what I will tell you is that HE IS ENDURING THEM. His spirit is high, his attitude wonderful. He jokes with the (cute) nurses, and listens very carefully to the Docs.
The rest of this week will be spent at home. Soaking in the tub, taking long showers, letting us love on him, and relaxing.
Next week his blood count will be at its lowest - he will be tired for sure.
Week 3 is the final week of cycle 1. He will start feeling really good...and then it will be time for surgery.
Dr. Parker is Wayne's cardio-thoracic surgeon. He is confident that he can take out the tumor that is snaking its way into Wayne's aorta. It's open heart surgery - with about 5 days of recovery time, but the risk sounds minimal. How amazing that we're already looking past it and onto the next step. Funny how we are able to roll with all the major news - open heart surgery? Bring it on.
After Wayne recovers from surgery, it will be time for cycles 2 and 3 of chemo. When that is all done, Wayne will be scanned again; his Doctors are looking for recession of the tumors. We won't know if they have responded to the chemo until then. The waiting is hellacious.
So, tomorrow.
I get to bring him home. The anticipation and joy I feel so acutely will keep me up all night, I am sure. I think Claire would like the company. :)
Soooo looking forward to the sun coming up...
The first 4 days are chemo. I am not going to even talk about the side effects that he is enduring - what I will tell you is that HE IS ENDURING THEM. His spirit is high, his attitude wonderful. He jokes with the (cute) nurses, and listens very carefully to the Docs.
The rest of this week will be spent at home. Soaking in the tub, taking long showers, letting us love on him, and relaxing.
Next week his blood count will be at its lowest - he will be tired for sure.
Week 3 is the final week of cycle 1. He will start feeling really good...and then it will be time for surgery.
Dr. Parker is Wayne's cardio-thoracic surgeon. He is confident that he can take out the tumor that is snaking its way into Wayne's aorta. It's open heart surgery - with about 5 days of recovery time, but the risk sounds minimal. How amazing that we're already looking past it and onto the next step. Funny how we are able to roll with all the major news - open heart surgery? Bring it on.
After Wayne recovers from surgery, it will be time for cycles 2 and 3 of chemo. When that is all done, Wayne will be scanned again; his Doctors are looking for recession of the tumors. We won't know if they have responded to the chemo until then. The waiting is hellacious.
So, tomorrow.
I get to bring him home. The anticipation and joy I feel so acutely will keep me up all night, I am sure. I think Claire would like the company. :)
Soooo looking forward to the sun coming up...
3.16.2009
Outside Looking In
Wayne is sleeping ... after going for 2 rounds around the floor (walking as much as possible), he is wiped out. He has had a rough day - really feeling the effects of chemo - and is trying to sleep as much as he can (thank you, Kellie, for that advice).
We are hoping he still gets to come home tomorrow, although, after just talking to his nurse - who hadn't heard that, we aren't sure.
The quiet of the itty bitty closet (his room) is punched with HGTV in the background, the drip, drip, drip of the chemo, and the sound of his bed moving every 30 seconds (which he has gotten used to). He opens his eyes every once in awhile to ask what I am doing, and how I am doing. The question chokes me up because, really, what I am supposed to say? He wants to know that I am okay, but that will only be the case if he is.
Some friends gave him the book, "The Shack." He doesn't have the stamina to even read a magazine, so I have borrowed his book and have started to read (for the first time since having kids, I think!). I haven't gotten that far into it, but so far it is good - it's about the spiritual journey of a man who has gone through (too) much in his life.
Caeden is hanging in there. He was SO excited that his aunt and uncle are here (my brother and his wife). He had school today and was excited to go see the Leprechans. I didn't know about any of that - I didn't even lay out anything green for him to wear - but thankfully I have Melissa to keep me in the loop with his schooling.
I just looked over at Wayne again as he shifts to get comfortable in his bed. He's got a pillow from home and some new pajama pants on. While I have always been protective of him, seeing him in bed brings out the Mama Lion. "Do you need new socks? More water?" My caregiving abilities are hindered to just a few tasks I can do for him, but the love behind them is greater than ever. I have never put on a pair of socks so gingerly or have been so obsessed with making sure he has enough ice water.
It doesn't look like the Doc will be in today, but hopefully we'll have some more news after Tumor Board tomorrow. Wayne has his last dose of chemo tomorrow around 11 am (runs 2 hours) - and then, finally a break.
Thank you all for your support. The kindess coming from everyone has been so appreciated!
Full of Hope,
Val
We are hoping he still gets to come home tomorrow, although, after just talking to his nurse - who hadn't heard that, we aren't sure.
The quiet of the itty bitty closet (his room) is punched with HGTV in the background, the drip, drip, drip of the chemo, and the sound of his bed moving every 30 seconds (which he has gotten used to). He opens his eyes every once in awhile to ask what I am doing, and how I am doing. The question chokes me up because, really, what I am supposed to say? He wants to know that I am okay, but that will only be the case if he is.
Some friends gave him the book, "The Shack." He doesn't have the stamina to even read a magazine, so I have borrowed his book and have started to read (for the first time since having kids, I think!). I haven't gotten that far into it, but so far it is good - it's about the spiritual journey of a man who has gone through (too) much in his life.
Caeden is hanging in there. He was SO excited that his aunt and uncle are here (my brother and his wife). He had school today and was excited to go see the Leprechans. I didn't know about any of that - I didn't even lay out anything green for him to wear - but thankfully I have Melissa to keep me in the loop with his schooling.
I just looked over at Wayne again as he shifts to get comfortable in his bed. He's got a pillow from home and some new pajama pants on. While I have always been protective of him, seeing him in bed brings out the Mama Lion. "Do you need new socks? More water?" My caregiving abilities are hindered to just a few tasks I can do for him, but the love behind them is greater than ever. I have never put on a pair of socks so gingerly or have been so obsessed with making sure he has enough ice water.
It doesn't look like the Doc will be in today, but hopefully we'll have some more news after Tumor Board tomorrow. Wayne has his last dose of chemo tomorrow around 11 am (runs 2 hours) - and then, finally a break.
Thank you all for your support. The kindess coming from everyone has been so appreciated!
Full of Hope,
Val
What a difference a day makes
Now I see what people mean about chemo...I feel great now but this morning was a rough one. I woke up with some nausea and am getting over it now. They put me on some new meds that hopefully will stop it before it happens but wow! :) I guess that means the chemo is working and I am definitely not complaining. I am currently going through day 3 of the first round. It feels great to get this moving. As a far as I know, I am still going home tomorrow evening. I am looking forward to that more than you can imagine.
My sister left for LA last night and my parents just left to run back to South Dakota for a few days. I am not sure how much fun I am right now anyway :) I am just laying around and going for the occasional walk. I promise I will be much more fun at home. :)
Otherwise, not much new news. I am waiting for the second team of docs to come in and tell me what they are thinking for my hip. I will post afterwards on what the plan is. I am hoping to get a schedule or calendar together on how this is all going to happen. As always, I appreciate the emails, calls, prayers and all of the other support that you have shown my family. It means so much to me.
Wayne
My sister left for LA last night and my parents just left to run back to South Dakota for a few days. I am not sure how much fun I am right now anyway :) I am just laying around and going for the occasional walk. I promise I will be much more fun at home. :)
Otherwise, not much new news. I am waiting for the second team of docs to come in and tell me what they are thinking for my hip. I will post afterwards on what the plan is. I am hoping to get a schedule or calendar together on how this is all going to happen. As always, I appreciate the emails, calls, prayers and all of the other support that you have shown my family. It means so much to me.
Wayne
3.15.2009
First day down!
The first day of chemo is history. I can't tell you it isn't a bit scary watching that kool-aid colored fluid work its way into your body but feels so good to get started. The only real difference I have noticed is that some food has a kind of metallic taste. My friend Jennie, who visited me yesterday, said that what she read in the Livestrong book too. I need to get a copy of that as it is getting REALLY boring watching basic cable all day long :)
I had a really encouraging discussion with the cardiac thoracic surgeon yesterday. He feels pretty good about getting into my chest and removing the tumor that is moving into my heart. He is literally the top cardiac surgeon in the area and has specific experience removing sarcomas. It is open heart surgery (which sounds really scary) but anymore it is a pretty routine surgery. He thoughts the risks were in the 2% range which is good enough for me :) I am hoping to have that done when this initial chemo is finished and my immunity has recovered. His guess was two weeks but hadn't conferred with the oncologist yet. More news on Monday.
Otherwise, just wanted to let everyone know that I feel great and appreciate everything that you have done for my family. It means so much to me that they are being well taken care of so I can fight through this. Thank you so much!
I had a really encouraging discussion with the cardiac thoracic surgeon yesterday. He feels pretty good about getting into my chest and removing the tumor that is moving into my heart. He is literally the top cardiac surgeon in the area and has specific experience removing sarcomas. It is open heart surgery (which sounds really scary) but anymore it is a pretty routine surgery. He thoughts the risks were in the 2% range which is good enough for me :) I am hoping to have that done when this initial chemo is finished and my immunity has recovered. His guess was two weeks but hadn't conferred with the oncologist yet. More news on Monday.
Otherwise, just wanted to let everyone know that I feel great and appreciate everything that you have done for my family. It means so much to me that they are being well taken care of so I can fight through this. Thank you so much!
3.14.2009
Today is the day
First of all, I wanted to thank everyone for their outpouring of support. This the first time I have blogged on this site and wished it was under different circumstances. I have heard from friends all over country, old friends from high school and colleagues and it has truly touched me. I haven't been able to reach back but I promise to in the weeks to come.
As I write this, I am sitting at my new hospital awaiting my first round of chemotherapy. I should be starting in about two hours (1PM Mountain time). I am so excited to get started and get the treatment underway.
I did get a bit of good news in that they think they may send me home on Tuesday or Wednesday of next week instead of keeping me in the hospital. I am trying not to get my hopes up to high but I would love nothing more to be at home with my wife and kids. That truly has been one of the hardest things about this past week.
I will try and keep everyone updated on how it is going. It doesn't sound like too much will change for the next few days so hopefully will be able to start answering back all of your messages.
Again, thank you for all of your thoughts and prayers. I feel great and am ready to get this going and will need those as we move forward.
Wayne
As I write this, I am sitting at my new hospital awaiting my first round of chemotherapy. I should be starting in about two hours (1PM Mountain time). I am so excited to get started and get the treatment underway.
I did get a bit of good news in that they think they may send me home on Tuesday or Wednesday of next week instead of keeping me in the hospital. I am trying not to get my hopes up to high but I would love nothing more to be at home with my wife and kids. That truly has been one of the hardest things about this past week.
I will try and keep everyone updated on how it is going. It doesn't sound like too much will change for the next few days so hopefully will be able to start answering back all of your messages.
Again, thank you for all of your thoughts and prayers. I feel great and am ready to get this going and will need those as we move forward.
Wayne
3.13.2009
Change of Plans
Wayne's Oncologist, Dr. Reznick, was in contact with Dr. Patel at MD Anderson this morning. It looks like MDA does not have a clinical trial that fits Wayne. Dr. Patel and Dr. Reznick conferred about Wayne's case and agree that time is of the essence, and that chemo needs to be started right away.
Because MDA does not offer anything that we can't get here, Wayne has decided to stay in Denver. He is being transferred to Presbyterian St. Lukes (PSL) Hospital this afternoon and will be under the care of Dr. Reznick's partner. The Cardio-Thorasic & Oncology Teams at PSL are top-notch and we feel it's the best place for Wayne right now.
Wayne will be treated in-house and will not be coming home for awhile. We are guessing 2 months but we aren't 100% sure. It depends on how he reacts to treatment.
It seems like an eternity since Sunday - everytime I go to sleep I look over at his empty side of the bed and just want to run back to the hospital and climb into bed with him. I smell his shaving cream, touch his clothes hanging in the closet, and trip over his shoes that I refuse to move. I feel anxious when we're not together but know he needs time to himself - to think, to sleep, to read all of your emails ...
So for now, we are all just anxiously awaiting his transfer, loving him, and praying for him.
As always, I will update as I know more. My goal is to do it daily ...
Because MDA does not offer anything that we can't get here, Wayne has decided to stay in Denver. He is being transferred to Presbyterian St. Lukes (PSL) Hospital this afternoon and will be under the care of Dr. Reznick's partner. The Cardio-Thorasic & Oncology Teams at PSL are top-notch and we feel it's the best place for Wayne right now.
Wayne will be treated in-house and will not be coming home for awhile. We are guessing 2 months but we aren't 100% sure. It depends on how he reacts to treatment.
It seems like an eternity since Sunday - everytime I go to sleep I look over at his empty side of the bed and just want to run back to the hospital and climb into bed with him. I smell his shaving cream, touch his clothes hanging in the closet, and trip over his shoes that I refuse to move. I feel anxious when we're not together but know he needs time to himself - to think, to sleep, to read all of your emails ...
So for now, we are all just anxiously awaiting his transfer, loving him, and praying for him.
As always, I will update as I know more. My goal is to do it daily ...
Pictures
I haven't seen Caeden look better than when he crawled into Wayne's bed yesterday. And Claire. Just when you think she is too young to know anything, she wiggled around like a maniac when she saw Wayne yesterday. She wanted nothing else but to be held by him.
The only news I have is that the pathology report has been sent to MD Anderson because there is a disagreement on the diagnosis. Two pathologists were unable to agree on the type of Sarcoma. We are confident MD Anderson will be able to give us a diagnosis.
Waiting for transfer information. Will post when we get some news.
Val
P.S. Anyone have an Apple iPhone? I am getting my email on it, but when I sync it on my desktop (also an Apple), my email does not sync. This is a problem because I am unable to open many of the email messages you have been sending.
3.12.2009
Possible Transfer
Wayne has been transferred to a new room. Room number 130 at Parker Adventist Hospital. He can now have visitors with no restrictions. This means the kids. :)
This moment, Caeden is crawling all over Wayne. Asking questions, pushing buttons, and saying over and over, "I sure do miss you!"
The room is already covered in drawings (of cement trucks and volcanos) and I can already see improvement in both Wayne and Caeden.
Here is what is going on:
1. We are moving Wayne to MD Anderson (University of Texas Hospital) Cancer Center ASAP. They have an Adult Sarcoma Cancer Center - just about as specialized as it comes for Wayne. We are so blessed to have collegues and friends who were able to give us a referral to MD and now we are waiting for: 1) The case manager to help us with the transfer 2) Wayne's current Oncologist to evaluate him to see if: a) it is possible for him to fly b) if treatment can be started here and then continued there or if he can just start down there (it would mean getting to Houston tonight or tomorrow - otherwise, chemo will have to start here because he has no time to wait).
Wayne's sister is flying in today, and my brother and sister in law will be here in (Denver) or Houston to help us. Wayne's parents, my mom, dad, sister, and Jordan are all here now helping with the kids, helping with the house, food, with everything. It has been a God send to have everything run as smooth as it has so that Wayne can have constant company.
As soon as I know what direction/location we are headed for, I will let you all know. We are feeling anxious to get started, but hopeful and optomistic that our plan is the right one.
For now, we still ask for your prayers for Wayne's strength, wisdom for his doctors, and for God to hold us all in his hands as we fight this.
Thank you for all of your support. I hear there is a Facebook support group, although I haven't had time to check it out. I think if you search for "Wayne Koop Support Group" or "Kristin Rozier" you'll be able to find it.
Wayne said he was going to blog today, so look for a posting from him - I know you are all anxious to hear from him.
This moment, Caeden is crawling all over Wayne. Asking questions, pushing buttons, and saying over and over, "I sure do miss you!"
The room is already covered in drawings (of cement trucks and volcanos) and I can already see improvement in both Wayne and Caeden.
Here is what is going on:
1. We are moving Wayne to MD Anderson (University of Texas Hospital) Cancer Center ASAP. They have an Adult Sarcoma Cancer Center - just about as specialized as it comes for Wayne. We are so blessed to have collegues and friends who were able to give us a referral to MD and now we are waiting for: 1) The case manager to help us with the transfer 2) Wayne's current Oncologist to evaluate him to see if: a) it is possible for him to fly b) if treatment can be started here and then continued there or if he can just start down there (it would mean getting to Houston tonight or tomorrow - otherwise, chemo will have to start here because he has no time to wait).
Wayne's sister is flying in today, and my brother and sister in law will be here in (Denver) or Houston to help us. Wayne's parents, my mom, dad, sister, and Jordan are all here now helping with the kids, helping with the house, food, with everything. It has been a God send to have everything run as smooth as it has so that Wayne can have constant company.
As soon as I know what direction/location we are headed for, I will let you all know. We are feeling anxious to get started, but hopeful and optomistic that our plan is the right one.
For now, we still ask for your prayers for Wayne's strength, wisdom for his doctors, and for God to hold us all in his hands as we fight this.
Thank you for all of your support. I hear there is a Facebook support group, although I haven't had time to check it out. I think if you search for "Wayne Koop Support Group" or "Kristin Rozier" you'll be able to find it.
Wayne said he was going to blog today, so look for a posting from him - I know you are all anxious to hear from him.
3.11.2009
Biopsy
As I type this, Wayne is having a biopsy done on the tumor going in his hip. Radiology was not able to get a good sample from his lungs, so they are sampling the other location now.
This means once we have the new biopsy results, they'll be able to give us a diagnosis. We know it is sarcoma, but not which type. The type of treatment will most likely be high doses of chemo, but until we know which type we are dealing with, they can't start treatment.
One of the largest hurdles is one of the tumors in his heart has grown a "finger" that has entered his pulmonary vein and aorta. The scare is that it may possibly break off and land some where else in the body. This is where the concern is greatest, so if you are praying, please pray for the tumor to respond to the chemo and retract.
Once his cardio problem is under control (or at least stable), they will deal with hip and pulmonary areas (although the chemo will attach all areas anyway).
So, for now, we are waiting on the biopsy. Then the diagnosis will determine treatment. From there we will start treatment and are also looking at second opinions from another Oncologist at Presbyterian St. Lukes hospital.
For now, it is one thing at a time. One moment at a time.
Caeden knows that Daddy is sick. He asks for him all day and first thing in the morning - always asking, "are the germs in daddy's lungs gone yet?" We are trying to be as honest as possible - he knows Wayne is in the hospital - and are trying hard to keep Caeden's routine as normal as possible.
Wayne has been getting your emails and please know each and every word of support means the world to him. He is going to start blogging here, too, so that he can be in touch with everyone.
Thank you for your prayers and kindness. We feel surrounded by love and support. Thank you! We feel you. We feel God.
Val
This means once we have the new biopsy results, they'll be able to give us a diagnosis. We know it is sarcoma, but not which type. The type of treatment will most likely be high doses of chemo, but until we know which type we are dealing with, they can't start treatment.
One of the largest hurdles is one of the tumors in his heart has grown a "finger" that has entered his pulmonary vein and aorta. The scare is that it may possibly break off and land some where else in the body. This is where the concern is greatest, so if you are praying, please pray for the tumor to respond to the chemo and retract.
Once his cardio problem is under control (or at least stable), they will deal with hip and pulmonary areas (although the chemo will attach all areas anyway).
So, for now, we are waiting on the biopsy. Then the diagnosis will determine treatment. From there we will start treatment and are also looking at second opinions from another Oncologist at Presbyterian St. Lukes hospital.
For now, it is one thing at a time. One moment at a time.
Caeden knows that Daddy is sick. He asks for him all day and first thing in the morning - always asking, "are the germs in daddy's lungs gone yet?" We are trying to be as honest as possible - he knows Wayne is in the hospital - and are trying hard to keep Caeden's routine as normal as possible.
Wayne has been getting your emails and please know each and every word of support means the world to him. He is going to start blogging here, too, so that he can be in touch with everyone.
Thank you for your prayers and kindness. We feel surrounded by love and support. Thank you! We feel you. We feel God.
Val
3.10.2009
Cancer.
This word will forever divide our lives into the before and after.
Right now I am not even sure where to start.
He had a cough for months and pain in his hip that we thought was an inflamed broca sack . He went into the hospital for what we thought was pneumonia but soon found out the extent of his illness.
We do not have a diagnosis yet, but oncology has confirmed it is a type of sarcoma and it stage 4. Most likely the cancer started in his hip and has spread to his lungs.
This is the most devastating time in our lives but we are doing our best to take each day one at a time.
I ask all of you to please pray for Wayne.
I will update the blog as I know more.
Right now I am not even sure where to start.
He had a cough for months and pain in his hip that we thought was an inflamed broca sack . He went into the hospital for what we thought was pneumonia but soon found out the extent of his illness.
We do not have a diagnosis yet, but oncology has confirmed it is a type of sarcoma and it stage 4. Most likely the cancer started in his hip and has spread to his lungs.
This is the most devastating time in our lives but we are doing our best to take each day one at a time.
I ask all of you to please pray for Wayne.
I will update the blog as I know more.
3.07.2009
This Time I Mean It! ...Maybe.
I have been battling a case of mastitis but still slept on Claire's floor last night due to a snoring husband. She got up 4 times in the night, and I actually remember thinking, "I really wish our bedroom was on the same floor as the kids' - this is so nice to be close." Ummm, what would be even better is a baby that sleeps through the night. ;)
So, this morning, bright and early I announce to Wayne that THIS weekend is the weekend I let C-Bear cry it out through the night. I really need some rest. I mean, I have gotten no more than 4 hours of continuous sleep in 9 months. Not to while, but c'mon, don't I deserve to whine a little bit?
To my announcement, Wayne says, "Uh, yeah. I have heard that before." And he is right. I announce my cry it out plan at least once a month. Why can't I do it, you ask? Where is my backbone, you wonder.
The thing is, she snuggles up in the crook of my neck. Her sweet little baby hand rubs my arm when she eats. She just smells good. She turns my willpower into, "please don't let moments like this end." And there I am, getting up again.
Most of the time I function at a reasonable level. You know, the kids are clean and fed, the house is clean. But with this infection I have going on, it highlights how nice rest would be because all I want to do is curl up in bed and sleep/hide/pretend I am not here.
In other news, we're going through an interesting phase with Caeden. He has started the "NO!" back-talk. He stomps. He pouts. Don't get me wrong, he is still the sweetest boy ever, but I am aware those are Mommy-goggles talking. Where is my sweet boy at? With all his attitude and his need to eat continuously, I am starting to wonder if he has rocketed through his pre-school years straight into his teens. A curiously small teen that still needs help getting dressed, that is.
Wayne is gone next week so thank goodness Lindsay and Jordan are staying with us. It makes navigating the evenings so much easier!
What else...?
Oh, the gym. Caeden likes going! And I love going. There is something about someone running beside you on the treadmill that gives you endurance unlike anything else. Up until a few days ago, I would head straight upstairs and do cardio, but Wayne wandered over the indoor pool the other day. I am embarrassed to admit I didn't even know there was an indoor pool (though I knew of the outdoor/waterslide one). Now that I know this, it is time to find a swimming suit that: 1) hides my body (I need to check into whether they allow wet-suits in the pool) 2) cannot be pulled off (like the embarrassing moment I had 2 summers ago in our neighborhood pool), 3) looks stylish (wetsuit in fashion colors, perhaps?).
I'm excited to work on Caeden's swimming lessons together!
Well, that's all that has been going on here.
Last, sorry for such a text-heavy post. I plan on getting my camera out real soon.
So, this morning, bright and early I announce to Wayne that THIS weekend is the weekend I let C-Bear cry it out through the night. I really need some rest. I mean, I have gotten no more than 4 hours of continuous sleep in 9 months. Not to while, but c'mon, don't I deserve to whine a little bit?
To my announcement, Wayne says, "Uh, yeah. I have heard that before." And he is right. I announce my cry it out plan at least once a month. Why can't I do it, you ask? Where is my backbone, you wonder.
The thing is, she snuggles up in the crook of my neck. Her sweet little baby hand rubs my arm when she eats. She just smells good. She turns my willpower into, "please don't let moments like this end." And there I am, getting up again.
Most of the time I function at a reasonable level. You know, the kids are clean and fed, the house is clean. But with this infection I have going on, it highlights how nice rest would be because all I want to do is curl up in bed and sleep/hide/pretend I am not here.
In other news, we're going through an interesting phase with Caeden. He has started the "NO!" back-talk. He stomps. He pouts. Don't get me wrong, he is still the sweetest boy ever, but I am aware those are Mommy-goggles talking. Where is my sweet boy at? With all his attitude and his need to eat continuously, I am starting to wonder if he has rocketed through his pre-school years straight into his teens. A curiously small teen that still needs help getting dressed, that is.
Wayne is gone next week so thank goodness Lindsay and Jordan are staying with us. It makes navigating the evenings so much easier!
What else...?
Oh, the gym. Caeden likes going! And I love going. There is something about someone running beside you on the treadmill that gives you endurance unlike anything else. Up until a few days ago, I would head straight upstairs and do cardio, but Wayne wandered over the indoor pool the other day. I am embarrassed to admit I didn't even know there was an indoor pool (though I knew of the outdoor/waterslide one). Now that I know this, it is time to find a swimming suit that: 1) hides my body (I need to check into whether they allow wet-suits in the pool) 2) cannot be pulled off (like the embarrassing moment I had 2 summers ago in our neighborhood pool), 3) looks stylish (wetsuit in fashion colors, perhaps?).
I'm excited to work on Caeden's swimming lessons together!
Well, that's all that has been going on here.
Last, sorry for such a text-heavy post. I plan on getting my camera out real soon.
3.04.2009
Pictures of the Baptism
Rev. Bruce Herrboldt baptized Claire. He is special to us in many ways ... he married Wayne and I, baptized Caeden and Me, spoke at Grandma Goldie's funeral service, and will be marrying Nikki and John. Speaking of John, thank you for getting this shot. It is my favorite!
Claire's baptism was held on Saturday morning. I loved that only family was present, although I know traditionally the church congregation is present on Sunday's, but because we do not go to United Methodist, we didn't feel the need to hold the service for everyone. So, as it was, most of Wayne's side of the family was there: Nikki and John, Mom and Dad, Aunt Marlie and Uncle Jim, Rick and Cassie and the kids ...
We all circled around Claire during the ceremony, which felt intimate and special. We all dipped our fingers into the water that baptized Claire to remember the meaning of our own baptisms and what it means to support Claire through and beyond hers.
Claire Bear before the baptism.
This picture looks blurry but I love it regardless.
Grandpa & Grandma with Claire right after the ceremony. Poor Claire was frazzled from all the water, the singing, and being passed around.
After the service, we went back to Jim and Marlie's for a luncheon - complete with Marlie's special mints, and yummy chocolate cake, and lots of steam burgers and veggies. It was just perfect!
More to come ... still trying to get photos onto my desktop...
3.03.2009
P.S. Wanna see what Claire will be wearing soon?
I got a few things, too. :) That dress ...
and these pants. Cute for the grocery store or lounging, huh?
Claire got this shirt with some other pants (huge ruffle at the bottom) ...
This shirt and those green striped pants (again, with ruffle at bottom) ...
This outfit ... (but for next year - didn't come small enough for her now)
This shirt ...
And this dress and pants. Cute huh?!You can see it all here: Matilda jane.
Okay, and I promise, no more Matilda posts. I am officially done. Until the fall line comes out ...
We're Back
We loaded up the SUV early Friday morning and headed to South Dakota to surprise Mom (Wayne's Mom -- aka Grandma) for her 60th birthday party. We held it at the Chophouse and it was packed full of her friends and family -- and get this -- it was a total surprise. She never had a clue! How often does that happen??
I had to leave a bit early to get Claire to bed, but I heard by the end of the night, Donna was doing shots at the bar. :)
Then, early Saturday morning we went to church and had Claire baptized. It was an intimate, sweet ceremony that I will never forget. Claire looked beautiful. I'll post pictures as soon as I figure out how to transfer them from my laptop to my desktop.
Later that night, we went to Hill City for a lil' dinner at Alpine Inn. I love that place! The menu is just one thing: filet of beef (either small or large size) served with a baked potato, a yummy wedge of lettuce with the BEST ranch dressing on earth, and some toast. Simple, delicious and a total tradition when we go home.
After stuffing ourselves, driving home and putting the kids to bed, we were off again to Rick and Vanessa's house. They just moved into a darling new home complete with a real fireplace and french doors off of their bedroom. Very nice~! We played a game, visited ... and then we got a call that Claire was awake (surprise, surprise) so we had to leave early. It was hard to go - we were having so much fun with everyone. Thanks for having us over Vanessa!
Sunday was lower-key. We sat around a talked a lot about wedding stuff (Wayne's sister, Nik is marrying John in May). That night, everyone went to Deadwood for a bit of fun, but Mom and I stayed home (I was in bed by 8:30).
We left Monday ... leaving both Dave and Donna sick (see my last couple of posts). We just got a call from John - Nikki is sick, too. Apparently my family is not too popular right now.
Feel better soon everyone!
Posting pictures as I can ...
I had to leave a bit early to get Claire to bed, but I heard by the end of the night, Donna was doing shots at the bar. :)
Then, early Saturday morning we went to church and had Claire baptized. It was an intimate, sweet ceremony that I will never forget. Claire looked beautiful. I'll post pictures as soon as I figure out how to transfer them from my laptop to my desktop.
Later that night, we went to Hill City for a lil' dinner at Alpine Inn. I love that place! The menu is just one thing: filet of beef (either small or large size) served with a baked potato, a yummy wedge of lettuce with the BEST ranch dressing on earth, and some toast. Simple, delicious and a total tradition when we go home.
After stuffing ourselves, driving home and putting the kids to bed, we were off again to Rick and Vanessa's house. They just moved into a darling new home complete with a real fireplace and french doors off of their bedroom. Very nice~! We played a game, visited ... and then we got a call that Claire was awake (surprise, surprise) so we had to leave early. It was hard to go - we were having so much fun with everyone. Thanks for having us over Vanessa!
Sunday was lower-key. We sat around a talked a lot about wedding stuff (Wayne's sister, Nik is marrying John in May). That night, everyone went to Deadwood for a bit of fun, but Mom and I stayed home (I was in bed by 8:30).
We left Monday ... leaving both Dave and Donna sick (see my last couple of posts). We just got a call from John - Nikki is sick, too. Apparently my family is not too popular right now.
Feel better soon everyone!
Posting pictures as I can ...
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