Friday, May 1, 2009


so we got a phone call late this 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 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*


Molly at Blink Photographic said...

I'm so sorry you guys are having to go through this. I'm so glad you have each other. We're praying.
Love you both.
Kristian and Molly

tisha said...

Oh girl, my heart is crying for you. I so understand that change of "normal" is so hard. I know how hard this has to be, because it was hard and still is hard with my sister so I know with Mark it is ever more magnified. I know there are a lot of emotions involved, but I know you will make the best of this and you will have YOUR normal life and enjoy it because you have each other and a great family.

You want to hear a crazy thing: this moring I was thinking of you and I was thankful that Kinley got her tubes in and is healthy before this all happened.

We love you and praying for you.

Rachel Marie said...

The Lord has blessed you with such a positive and joyful attitude in the midst of this trial! I hope and pray that He will be glorified as your family presses on in faith.

Brooke said...

Love you guys! and i loooooove kya's garden :)

Beth Bouws said...

Give our love and greetings to Grandpa and Grandma Guikema. We are thinking of all of you and praying for you. We have enjoyed seeing the pictures of your beautiful family.

Sparky said...

Love you Bro!

We are praying for you and your family. Count on it!