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!