a day at national jewish

today was our big appointment at national jewish hospital. we went in for a new patient evaluation and saw dr hamzeh. we were so blessed to be matched with such a great doctor. he was the perfect combination for us. he was personable yet also very detailed in explaining sarcoid to us. it was quite the experience there. they have that hospital running like a well oiled machine! it felt so organized and smooth going from one department to the next getting tests, scheduling future tests, lab work, and even a education time with the nurse explaining in detail more what the next year or 2 will look like.

dr hamzeh took a lot of time going over our chest xrays and ct scans. he explained all about the statistics of sarcoid disease and what i might look like for mark. he explained that with marks current disease process he has 60% chance of going into remission in approximately 2 years, with continued flareups approximately every couple of years. the other 40% is the risk mark has of having a chronic progressive sarcoidosis. these numbers were really hard for mark and i to digest....we would have loved a 80-20 or even 90-10 statistics. but those numbers and real and we will pray hard that mark is part of that 60% group.

the other concern was there were some red flags of mark's heart. the doctor explained it was very rare to have heart involvement with sarcoid, but with a couple of mark's symptoms he wanted to do a full cardiac workup. he explained that sarcoid in your heart can produce a irreversible heart rhythm that is fatal. he said with the heart and with the brain he always has a zero tolerance. we are nervous that there might be concerns, but so glad he is going to check mark out to make sure there are not any issues right now.

as of tomorrow the doctor is going to start to wean mark off the steroids, which takes a full month. during that time we are supposed to be very aware of any symptoms to make sure mark's body is handling it well. dr hamzeh is not a huge fan of steroid treatment. he would rather use some low dose chemo drugs or some other forms of treatment that he has seen success with, and to use steriods only if totally necessary. we are very excited to have mark start going off the steroids...the side effects are not soo fun!

on june 17th we will start our first full day at national jewish for testing. we arrive at 730 for check in and have a routine echo cardiogram, a agitated saline echo cardiogram, a 12 lead ecg, a averaged ecg, mark is also getting set up with a holter monitor to wear for 2 days to monitor his heart, and then we will be finishing the day with a 1 1/2 hour pulmonary function test!! they said we should be finished by 4:00 that day...sounds fun huh! then on the 18th we go back for a methacholine challenge, and a exercise desaturation with oxygen titration test :)

if all that looks good we will start our schedule of visiting national jewish every 3 months for the next 1-2 years. those days will start with tests the first half of the day followed with a consultation with our doctor going over the tests from that morning and making a plan of care for the next 3 months. this was alot for us both to take in knowing we will be spending a lot of time at national jewish with this disease. yet this was the first time since we received the diagnosis that we truly felt supported and aware of what this will look like for mark. it was a bitter sweet day!

we also got consented to be a part of a research team there that works with sarcoid disease. they drew a bunch of blood for that team today. we are excited to be a part of that process. even if it does not benefit mark, maybe someday someone will benefit from this current research.

needless to say our heads were spinning as we walked out this morning. we had tears of joy and tears of sadness in the very same moment. it hit both of us how amazing it is that god placed us with a great doctor who we both liked, and to live here in colorado with a hospital like this at our fingertips. we even found out our doctor lives within 5 minutes of our house!! god is taking such amazing care of us!! it was also a realization that this was real. this really was happening...this really is our life. mark said it was very hard for him to sit in the waiting areas and know he was here for him. that he was actually diagnosed with a disease that was not going away.

i think it is going to take a couple days for this all to sink in and to process all the information we were given. what was so great was our doctor gave us his email address and told us to email him with anything! he said he did not want us to ever sit wondering about an answer to a question or a concern. he said he wants to be a support to us! i was so impressed! the nurse that works with dr hemzeh was also amazing she gave us her direct number to call with anything !

mark got a flu shot and pneumovax shot today. they said due to this disease it is very important to stay a healthy as possible.

thank you all for your prayers and concern! this is a huge life adjustment for us, but we feel so blessed to have so many people around us who care!

One Week Later

It is amazing how quickly Eight Years goes by! So much has happened in the last eight years. So much joy and happiness. So much love and fun and life. So much that I wish I could have shared with Mom. It doesn't get easier. There are days that go by where I don't realize she is gone. The regular days where we are a family and just having fun. The routine days that I love with my girls and my wife. They are days that I cherish and I want to remember the smiles and laughter and the funny stories. I love those days.
There are other days, engagements and weddings and anniversaries and birthdays and days in the hospital, that it is painfully evident that she is gone. Those are harder days. May 19 is one of those days. Brooke suggested a tradition that we plant each May 19 to remember Mom. I get to share some stories with Brooke, Kya, and Kinley about what I remember and the things I love about her. One of the things that she especially loved was her garden, I love planting new plants with Kya.
She remembers riding Grandma Marilyn's horse ET last year in Michigan. And this year, as we started talking to Kya about May 19, Kya decided that she needed to send a note to Grandma. She really wanted Grandma to come get the letter so she could give her a hug and tell her she loved her, but we told her that couldn't quite happen. Brooke had the idea to get some balloons to send the notes to heaven. After planting the plant, writing the notes, and attaching the balloons, we stepped into the backyard to send the notes up. Now, it was a very windy day. After a couple quick pictures, we let the balloons go, and they raced out of view in a matter of seconds to the other side of the house. It wasn't the best photographic moment, so we jumped to the front of the house to try and watch the notes float to Grandma. When we got there, they were no where to be seen. Kya was a little disappointed, but when we told her Grandma Marilyn was really excited about her note, and that we thought she swooped down to grab them up right away, Kya thought that was pretty cool. I am not convinced that it really didn't happen that way.
Later that night, sitting on the couch with both my girls cuddled in my arms, I couldn't help but picture Mom holding the girls much the same way and playing with them. Brooke could tell that I was having a hard time, and she gives me some space and lets me be emotional. I can also picture the conversations Brooke and Mom may have had together. I think I would have ended up in a lot of trouble at times after those converstations and they would have been great friends. They are the two most amazing women in my life, now and forever. I am so lucky to have such an amazing influence like Mom early in my life, and now Brooke who continues to love me and challenge me and care for me and support me in this new phase of life. Unfortunately, we can only imagine what might have been. We don't get to have those days where we see her here, where she pushes Kya on the swing or crawls with Kinley on the floor a teaches Kya to ride horses, but Mom is a part of us everyday. She shaped me and taught me a great deal, and I hope that I can continue to pass on all I learned to my wife and my girls. Mom was amazing, and we will never forget that.

frustrated

so it has been 4 weeks since mark was in the hospital.... a LONG 4 weeks. we were talking this weekend about the process of those 4 weeks. the ups the downs, the good the bad, the happy the sad....and we determined we were both left just feeling frustrated.

we feel so blessed by so many people and by a god that has carried us through this journey. yet we are frustrated. we were told it will probably take 2 years for mark to feel better...that sounded bad at the beginning, but now that we are 4 weeks in...it sounds worse. we have gotten a taste to what life could look like with this disease....it sucks!! we were hoping that this far into it mark would be feeling better. but he is not..he is having a ton of not so fun side affects in addition to still feeling like crap. it is frustrating!

we go on thurs to national jewish hospital to see a specialist. they plan on reviewing all his tests and charts and hopefully giving us more information.there is a sarcoid research team there that they are hoping to get mark in.

this journey is a lonely one. one where you are told you have a new addition to the family... sarcoidosis. a word we had never heard before. a word that most people around us have never heard of. then you are handed a lapful of the unknown. of what this disease will look like for mark. not what it looks like for others...but for him. you read stories good and bad of others with sarcoid, and wonder what your journey will look like.

i was reading a story about bernie mac who died from a complication of sarcoid last year. in the article is summed up alot of what mark and i have been feeling.

"Emotionally, the uncertainty associated with sarcoidosis—never knowing when you're going to have a flare-up or how serious it will be—is one of the hardest parts of dealing with this disease, patients say. And then, there's the loneliness of having this disease with the funny name that no one knows about. You feel very isolated, One day, you might be racing around the house and the next day you might not be able to even get out of bed"

so there it is folks... please pray for us. pray for mark to start feeling some better. pray for answers, pray for strength, just pray :)

we love you all!

fun in the sun :)

i love when the weather gets warm and we get to spend our days outside!! it has been very warm the last week so we broke out the flower sprayer for the girls! this was kinley's first time in her swimsuit playing in the back yard! i am so looking forward to a nice quiet summer just playing at home. with mark being sick, the doctors told us we should lay low and stay close to home. i am totally fine with this! mark and i LOVE to sit at night and rock on our rocking chairs :) i welcome this season for us to slow down and just enjoy the blessing we have be given!!

A Better Day...

It is a better day...and that is a nice change of pace. Life has definitely been a little different over the last 3 weeks. The steroids have started to kick in, and that is good and bad. The good news...some of the secondary symptoms of sarcoidosis are reduced. Less night sweats, some relief in my chest, fewer coughing fits, and general momentum in the right direction. The bad news...my temper is shorter, I am developing "moon face" - which is really cool, I have some trouble sleeping - thank you meds, nausea, my heart pounds out of my chest, and I think my brain function is decreased, but maybe I am just a little more distracted by all the goings on. Sweet.

It is a slow process. Like I said, today is a better day, but I have had to come home early from work a couple times for naps, my energy level is way reduced, I need to take a break after fast walking through a sprinkler with my 3 year old twice, two flights of stairs is too much, and I just can't do much at all. God is working on my patience. I can't stand watching life go by with my wife and girls as I am too tired to take part. Brooke mows the lawn, takes care of me, does everything for the girls, cleans out the trailer, runs the errands, builds the patio, and on and on, and I sit on the side. There have been a couple days where I try to do anything and Brooke tells me I turn green. Awesome.

God is strong in my weakness. Apparently, my weakness may to last for a while. The doctor has said that it may be 2 years before I feel relatively back to normal based on the amount of stuff that was going on in my chest and lungs. We go to National Jewish Hospital on May 28 for more information on sarcoidosis and what life may look like. I also get to go to the eye doctor on June 11 for an evaluation. I have been told that I need to have the opthamologist on speed dial in case I lose color or start seeing spots. Joy.

But like I said, today is a better day. I walked 5 flights of stairs at work (don't tell Brooke) with a little break, I was able to help with dinner (gourmet hot dogs and broccoli - I love grilling in the summer - thanks Todd and Joe for the Omaha Steaks - I had no idea how good hot dogs could be), and I even got to water plants tonight (I know mom would have been proud). I'll take days like today. It was better than yesterday, and that's how I know God is working in me. Little by little, he is helping to change me, both my health and my heart. I am grateful today for my family, and especially my amazing wife, and the love and support they give. I am indebted to those who have helped me in many ways. And I am looking forward to tomorrow and what it brings. Good.

missing you all :)

i see you all visiting still...but no comments :) we so love to hear from you all!! leave a comment :) kerry...yes you...maybe just one :)

my girls!

here are some pictures from yesterday and today! they just make my heart smile so i have to share them. with everything that has been going on....the joys of life are still the same! these girls make everything stressful disappear!

still figuring it out

yesterday was a great day and a hard day... mark was so excited in the morning and had a lot of cute stuff planned for mothers day...he let me sleep in till 8 am...served me coffee in bed...had sweet cards...thoughtful presents...made breakfast...and then we were in a rush to get out the door to church. the race was on and it was a crazy. we finally got in the car and i took a look at mark...and he looked horrible. i mean he looked great...but sick :( i asked how he felt and he said he felt nauseated, dizzy & just overall bad. i talked him into turning the car around so that he could go home and lay down. he was so upset and frustrated that his body was telling him enough was enough. i got him to agree to nap for an hour and to see how he felt after that. i could tell after he had laid down he still felt pretty bad, but said he wanted to go to mom's for lunch. we had a great time at mom's celebrating. by the time we got home...he was ready for bed.

he was so frustrated and i so wished i could make it better for him. right now we are just learning how to do life with this disease. the hardest part is that the doctors say to expect 1-2 years before he in full remission, and for us that feels like FOREVER!

we are just taking it a day at a time...and trying to finding joy is all the blessing God has given us!
here are some pictures from our couple days away! it was so amazing that my aunt and uncle let us stay at their BEAUTIFUL cabin! it feels like a resort when we go there :)

Happy Mother's Day

Just in case any of you were wondering, my wife is the most amazing mother (and wife!) in the world. I can not say enough about the mom that she is. From days spent coloring and reading with the girls to hugs and kisses to tea parties and trips to the park to putting our house and lives in order to caring for others and staying up all night at work, Brooke gives all of herself to her family. I knew she was a gift from God the day he brought her into my life, I just didn't know at that time how lucky I would be to have a mom like her for my kids. I couldn't imagine anyone better! Brooke, I love you! Thank you for being who you are...I am so lucky and blessed...

emotions

these last couple days have been healing to my soul. i have been able to breath, to process, to heal.  God carried me through the last 2 weeks. it was a week ago that we were sitting wondering what was going to happen with our lives.  we were told mark most likely had lymphoma and would be starting treatment today....crazy! then we were thrown a new diagnosis ...sarcoid.  we have spent this last week educating ourselves,  accepting, and struggling with this disease. 

 today i feel like my emotions have caught up with me. i have such little control over my life at this moment, that i cling desperately to little things that may seem silly.  i have no idea  how mark is going to feel physically for the rest of his life, i have no idea when he will go in to remission, i have no idea how we are going to pay all our medical bills, i have no idea about many things... today my mom went to get some hanging baskets that were going on sale today that i really wanted.  i had in my head that we were going to have them...it was something i could control. well they were out of them...and i cried !! it seems so silly, but i was so upset

i am realizing God doesn't just have control over the big things i worry about he is in control over the little things. i am not in control! i can't wait for God to help me get to the point where i can truly live that out in my life in EVERY aspect!!

God is teaching me...he is stretching me.. it doesn't always feel good, but it is good! 

mark and i were watching the michael j fox special last night called "adventures of an incurable optimist"  it was so good for us to sit and witness people who have been handed a "diagnosis", but have made it something good. 

 

today i feel like i am in a storm

this song says perfectly how i am feeling 

i will praise him in this storm!

http://www.youtube.com/watch?v=Ji2rLXr3cEU

*please pray for a dear friend  in my bible study, she was told today her biopsy came back cancer, she will find out more on monday.  please cover her, her husband, and 2 young kids in prayers as she goes through this storm*

Long time coming...

There comes a time in life where we all should realize how good our lives are...where we begin to have our eyes opened to the many ways that God has been working in our lives to prepare us for the big moments in life.  I have been walking through life in autopilot a great deal.  My life has been amazing.  I knew my wife was incredible...just not how incredible.  I knew I was lucky to have 2 beautiful girls...but I didn't know how much they could lift my spirits and bring joy to my life.  I knew I had a good job and was lucky to have a Christian boss...but I didn't know the difference that would make in a time of personal crisis.  I knew God was big in my life...but I didn't know that He would speak directly to me through daily devotionals and the words of others.  I knew there were people out there who cared about me and my family...but I didn't know the depth of their commitment and the lengths they would go to to help and support my family.

I want to say thank you to everyone.  I want to thank you Brooke for being a rock for me.  For loving me as I sat in the hospital bed and bringing Chipotle when the nurse said I could eat.  Thank you for bringing joy on a birthday in the hospital.  Thank you for loving words and listening and crying with me when there was nothing else to do.  Thank you for reaming out our bedroom and ridding it of dust to help me get better more quickly.  Thank you for so many other things, there are hundreds and thousands of things you do every day that I don't say thank you enough for.  You are beyond words, but I am going to make sure everyone knows at least a little how wonderful you are.

Thank you, Kya, for beautiful pictures and coloring.  Thank you for being my nurse in the hospital and telling me how brave I was.  Thank you for hugs that make everything else fade away for a little while.  You are without a doubt, the most precious 3-year old on the planet (sorry to everyone else, but Brooke and I are lucky!)

Thank you, Kinley, for being you.  For sitting in my lap and cuddling.  For not noticing that there is anything different even when I was in the hospital. Thank you for being little so I can still pick you up and carry you around.

Thank you, everyone else, for patios, e-mail and facebook messages, meals, child care, books, last minute mountain getaways, pigs in the blanket, hospital visits, birthday flowers, gift cards, phone calls, text messages, steaks and snacks.  I can only hope that through all this that I will return your generosity, kindness, compassion, and love when given the opportunity.

As we can see, I may not be a frequent blogger, and I may even be a few days late even when I promise to blog the next day, but I do want to share a little of what God is constantly opening my eyes and heart to.  Life isn't meant to be lived on your own.  Life is meant to be shared, and that means all of it.  The joys, the trials, the emotions, the diagnosis, the thankfulness, and I can not keep it all in.  While I may have a lot of hard days coming, we will not live them alone.  It is only in our weakness that we recognize God's strength.  I will not pretend to be strong like that anymore and hide emotions and hurts.  Nor will I keep from sharing the joys that God constantly sets before us, but I want to share those with everyone.  Sorry this has taken a while, but thank you.  

so exhausted

i cannot explain to you how exhausted i am. i can not imagine how mark has been handling his extreme fatigue over last 2 months. i have just had a rough couple weeks which is NOTHING in comparison!!
today was a good day for mark, he made it through the entire day at work and we had a "normal" night at home! it feels so good to see a glimmer of progress today! mark remains positive and upbeat....i on the other hand feel numb and beaten down. it feels so embarrassing to admit i am so exhausted when my husband is the one who has the disease.

tomorrow we were supposed to be flying out to riviera maya for 6 days...change in plans :)
we are headed to our "colorado mexico" :) my aunt and uncle have a BEAUTIFUL mountain home in grand lake. they were gracious enough to let mark and i escape there till saturday! i cannot tell you how excited we are!! i cannot wait to take some time with just mark to process what has happened this last week. i also can't wait to just SIT...TO SLEEP....TO RELAX...
my mom & dad are going to watch the girls...thank you :)
mark PROMISES to blog in the next couple days!

here is a picture from kya and i's tea party today :) it felt so good to take some time with just kya and have some normal mommy kya time! she makes me forget everything we have been going through and just enjoy the moment

in weakness we will be strong

mark and i had a great morning talking about how God is using this current journey in our life . mark's devotional this am was about weakness and how it is in that place we can find TRUE strength in Christ... my husband is AMAZING!! here he sits with a huge diagnosis thrown his way, and he feels blessed. he told me today that he has always been good at "doing", & now God is going to help him grow in sharing. ..

we spent a long time this morning praying, and talking through how we have been carried by Christ through this time. it is in his perfect timing that we are being taken down this path. we need to walk down it no matter how hard or scary and trust God. we know this is God's plan for our life. we need to be stripped of our own false sense of control and power. we need to be broken so that he can rebuild us. this process is what he wants because he loves us and is not done with us and wants us to be closer to him.

what a gift!!!

mark is not feeling much better since starting the steroids. we know this is going to be a slow process. the doctors said to expect 2 years before mark in in remission. it is so hard to see him not able to do things he wants to do. watching him tire out so easily is something i will never get used to. i am praying that each day his body will respond to the medication and soon he will be able to start feeling more like himself. the hard part is we are unsure what that is now. will he ever feel like he used to....the doctors say there most likely will be permanent damage done to him lungs from this flareup...but what that means we are not sure.

i am nervous for mark this week, he is planning on heading into work and just seeing how it goes. i just don't want him to push himself too hard, and counteract any progress the medication is doing. mark's boss has been AMAZING!! we are so thankful for him to have a company stand by him through this time! i did not go into work tonight. mark said he was not ready for me to be gone. i also did not feel emotionally or physically ready..

we have so many little things that satan is throwing at us right now . in the midst of accepting this diagnosis, we are worried how financially we are going to cover the outrageous medical bills of kinley's surgery last week and now mark's condition. our plumbing is acting up, marks check engine light came on again, the sliding glass door is deciding to give out.... you can see satan trying so hard to make us feel defeated and broken. we have trust GOD WILL PROVIDE!! i normally am a control freak, who needs a plan and never wants to ask or admit when i need help, but God is working in me...i really have a peace that i have never had before. it is so amazing to see him working so evidently!

mark was wanting to blog today...but was a little more tired then he had hoped. i hope tomorrow he will!! i know God is going to use him to touch so many people's lives!

we love you all!

if you have time listen to the first 2 songs at the bottom on the blog on my playlist...these have so witnessed to us today!

a new look on life

today was a new day. a day with a new out look on life. today is a day we cherish each moment together as a family. today is a day that we move forward with what God has handed us. today was a good day....sarcoidosis and all :)

yesterday was hard. yesterday we were handed a diagnosis we did not want. but all we can do now is move on. we will not have to like it, but we have to accept it. mark and i know God is going to use this for his good. we will have a stronger marriage, we will be more loving parents, we will be more compassionate people....we will be better.

today i started taking steps to help mark physically in this new chapter of life. one area i can help i have learned is to decrease the risk of inflammation response for his body. the doctors said taking simple steps as decreasing dust, allergens, etc can help. i want to take ANY step to help mark fight off this and go in to remission as soon as possible. today i moved the furniture (with the help of my mom and sister :) ) and did a deep cleaning on our bedroom. threw away the pillows, and down comforter and got rid of any excess things that could gather dust. we got some new bedding, and pillows that are all hypo allergenic and can be machine washed very easily. i feel i can breath better already :) i know it may not do much for mark, but i am willing to try anything!!!

today we talked a little with kya about what is going on...she just said "i so sorry daddy you have sickies in your lungs...i will talk to jesus to help make you all better "....gotta love that girl!!

mark says to say thank you for all your love and support! it has been amazing to have people reach out to us during this time! he says he will blog tomorrow :)!!!

goodnight for now!

message :)

we really enjoyed when people wrote something when they came to the blog to catch up on what is happening....don't stop :) we love hearing from you all!!

results

so we got a phone call late this afternoon...it is sarcoidosis..........

we both just stood there and looked at each other, we didn't know what to say, how to respond.....we were shocked! we had been told this was a probability, but after the preliminary pathology report was in weds afternoon, we were told it was not. we were so relieved when we heard that sarcoid was out of the options. living with a disease FOREVER....was not what we had wanted. it felt crazy actually HOPING for lymphoma...but that was just a year of really hard times...and then there was the word ...CURE. with sarcoidosis there is NO CURE.... the oncologist had even said he would much rather see a guy marks age have lymphoma then sarcoid.....

so we had taken that off the list..the preliminary report said it saw no signs of sarcoid disease. we had closed that door leaving lymphoma or a rare kind of infection. but with both of those options we were at peace in that there was a end ....a cure to them both. we now were handed a entirely different picture, a forever, a loss of what is "normal".

we wish we knew what life was going to look like now, what to expect. but with this disease there is no security. we will never know if a "flareup" is going to happen. this is just going to take some time to adjust to ...to process...to accept.

mark started his heavy dose of steroids tonight. we will recheck labs and xrays in 1-2 weeks to see if things are responding. in 1 month we will repeat a cat scan to get a better picture. we are hopeful that his body will respond quickly to these meds, if they do not we can start other options such as low dose chemo drugs. for now we just wait and see. the doctor said to expect a 2 year process to get mark into remission from this flareup. he has a large number of granulomas in his lungs & a sign of some damage done to his lungs with this episode. we are hoping to catch his next flareup before it gets to this point. we have a lot to learn & a lot to understand as we get to know this new addition to our family.

we were told by the doctor to expect a feeling of a loss to our family . a loss of "normalcy". we have had a taste of that today ....there were tears, anger, sadness, denial, and then there was laughter, smiles, hugs, encouragement, hope and love..

we are just going to have to take this a day and a time...we feel so blessed to have each other right now! we love each other so deeply and know we can do this...

please pray for us, our girls, our family and friends as we all catch our breath and process.

we love you all!!

*here is an article my dad found that is great at explaining sarcoidosis*

http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sarc_all.html

passing time...

when we got home we tried to pass the time...a hard thing to do when you are waiting to see what is going to happen to your life. grandpa and grandma drove in from michigan to help us as we waited :) kya got to plant some flowers outside her playhouse, grandpa guikema and i finished the patio in front of our house that mark had started. it was hard for mark to sit and watch.... i am just glad we got it done. now mark and i can sit out on our patio and...pass the time....and wait for results

grandpa working on the patio
kya's beautiful garden she planted with mama and grandma this girl can make you forget about everything and just smile!

swimming with grandpa...she was soooo excited

what fun memories for her

she loves her "silly grandpa"