Tuesday, September 30, 2014


On September 28, 2014 at the age of 31, the soul of Michael Richard Van Deurzen, Jr. was taken to our Lord in the arms of his Savior Jesus Christ to share eternity with our triune God. This did not happen because he was good, or because he had suffered enough; but because of the grace of our God. Heaven has received a bright, precious soul. His spirit has been set free, no longer to feel the pain or challenges of Cystic Fibrosis.

We will miss Mike’s creative and loving spirit. We will miss the entertainment he provided with his juggling, balloons, dancing, singing, motorcycle riding and playing guitar. He was always quick to volunteer to help out others, whether that was stopping at the children’s ward to entertain the kids with juggling or hopping on his Harley for a charity ride with his Brothers. Mike loved to give back.

But the thing we will miss most is the example he was in living. Mike exemplified life and this will be his lasting legacy. He lived life even when there appeared to be no more life left to live; purposefully, intentionally and with great passion. Mike was inspiring to many with his “One More Round” attitude. His constant upbeat mentality made us better for having known him. We have been privileged to witness his walk toward home.

Many were drawn to Mike’s easy going nature. He accepted everyone as they were. He had many friends from all walks of life and treated them all with the same dignity, respect and love that he cherished from others. Loved dearly by his family and friends, he will be greatly missed.
Mike was a 2002 graduate of Winnebago Lutheran Academy and a member at Faith Lutheran Church of Fond du Lac.

Family who await a blessed reunion with him in heaven are his mother, Gina (Paul) Thiesfeldt of Fond du Lac; father, Mike (special friend, Kay) Van Deurzen, Sr. of Little Chute; sisters, Katie Rae Van Deurzen and Amber Rettler; brothers, Richard and David Thiesfeldt; Grandparents, Jeanette Van Deurzen of Little Chute, David and Shirley Milner of Omro; and a nephew, Gage.  Aunts and Uncles are: Cathy (Jean) Van Deurzen, Sue (Jim) Spierings, Bob (Johnna) Van Deurzen, Don (Vicki) Van Deurzen, Steve (Chris) Van Deurzen, Scott (Tanya) Van Deurzen, David (Renee) Milner, Lynnette (Phil) Priebe, Terri (Mark) Gauthier, Darick (Anne) Milner, Douglas (Jo Rae) Milner, Dennis Milner, Dan Milner, Duane Milner. Mike is also survived by many cousins and his Brothers from the Top Hats Motorcycle Club in Oakfield WI and friends.

Mike was preceded in death by his grandfather, Robert "Rags" Van Deurzen; Uncle, Darrell Milner and cousin, Devon Milner.

Visitation will be held on Thursday, October 2, 2014, from 4:00 p.m. until 8:00 p.m. at Good Shepherd Lutheran Church, 855 Martin Ave., Fond du Lac. Visitation will continue on Friday at Faith Lutheran Church, 55 Prairie Road, Fond du Lac, from 9:00 a.m. until 10:30 a.m. Funeral services will be held at 11:00 a.m. on Friday, with Rev. Brett Naumann officiating. Interment will be in St. John Cemetery, Little Chute, immediately following the service. Condolences can be expressed at www.verkuilenfh.com. A memorial has been established in Mike’s name.

We would like to thank the staff at UW Madison’s D6/5 unit. We especially thank NP Brooke Lachance for her personal attention and professional care. She willingly took extra time to explain things to Mike in a way that helped him understand. Thanks also to Erin Patten, who was not only his primary caregiver and advocate while hospitalized but also his friend and confidant. May every chronically ill patient be blessed with such dedicated support! Mike was blessed and comforted by their compassion. We would also like to thank Mary W. from Heartland Hospice for her comfort and care during Mike’s final hours.

Sunday, September 28, 2014

He lives - The Victory is Won

On September 28th our Savior in his infinite wisdom took the soul of my son Michael Richard Van Deurzen, Jr. to the room he prepared for him in heaven.

Not because he was good enough . . .

Not because he suffered enough here on earth but because Jesus suffered the rest for him.

Because God saw that everything he had asked Mike to do was complete, he ended his time of Grace.

Then Jesus came and said, "This one is mine, see, his name is written in the book of life. The Holy Spirit wrote it there." And Jesus carried his soul to heaven.

And before we grieve I would just ask you to join me in a prayer of thanksgiving.

Dear Heavenly Father,

I thank you and praise your holy name for the gift you have given me in this precious son. I am humbled and thankful.

I thank you for every minute of the 31 years that you loaned us your son. For all the joy and all the sorrows. Thank you for giving Mike 60 years of love in only 31.

I thank you that through your Son you assured me of Mike's salvation.

I thank you that because YOUR Son suffered and died, my son will have eternity in paradise. And thank you Lord that, that salvation covers me too, so that I will one day be reunited with Mike in heaven.

In Jesus name we pray.

1 Peter 5:10 And the God of all grace, who called you to his eternal glory in Christ after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power forever and ever. Amen
 And now my friends it is time to grieve and say good-bye.

Ecclesiastes 3:4  A time to weep, and a time to laugh;
a time to mourn, and a time to dance.

Please sisters and brothers don't leave me just yet. I had to stay strong for Mike and I haven't had my time to grieve. I need your support to honor Mike's mortal remains. We will be making those arrangements over the next few days.

Please help me say good-bye to my our Mike(y). I'll see you at the funeral.

Breathe easy my precious son. Well done good and faithful servant.
I hope you're dancing up in heaven with King David because the Bible tells us that he can really rock out!!

I hope that I will see all of you too when I get to see Mike again in heaven.

Love, love, love you forever. My heart is so full.


P.S. As everyone has become aware during this final round of Mike's, there are many pieces to Mike. All of these pieces are scattered through all of you. Can I get them back? Over the next months and years I will grieve all that I missed with Mike while being his nurse, manager, and tutor. You can come back here to get my pieces because I'm sure I'll be sharing them. You know how to get a hold of me to share your pieces. Thanks so much. Love it forward people, love it forward. 

Saturday, September 27, 2014

In a Little While

Thank you for continuing to pray

Friday, September 26, 2014


I know, I know...
I'm incessant....but you said "Pray without ceasing" and you knew I was like this.
My other bosses know I'm like this too...Just ask Pastor Nauman or Dave.....they have to put up with me too. I know Pastor Nauman isn't my boss any more but he's still part of the plan and he's going to be contacting you soon.

Do you remember this conversation I had with Katie when she was 4 years old?

"Mommy, why do you pound on Mikey?"
Me: So he doesn't get sick.
"Oh, and what if he get's sick?
Me: Then we will take him to the doctor and they will make him better.
"Oh, and what if the doctor can't make him better?
Me: Then we will take him to the hospital and they will make him better - you know that Katie, you come there with us.
"Oh, yeah, that's right Mommy" and she scampered happily away. And in a moment she returned with a serious look on her face and put her hand on my shoulder and tipped her head and said, "And Mommy, what if the hospital can't make Mikey better?"
And I looked her right in the eye God, and you told me to say, "Then Jesus will take him and make him all better." Elated and with a giggle Katie said, "Oh, YES JESUS!"

I didn't lie did I?

So God, I can't pound on Mikey anymore.
And I can't take him back to the doctor because he has hospice instead.
And I can't take him to the hospital because he has a DNR.
So I think it is your turn now right God?

That's our plan right?

I'm getting a little excited. There is this joy coming that is new to me today. I guess you must be on your way. I'm glad I didn't lie to Mikey's sister Katie.

I couldn't sleep last night God, because I hadn't asked my brothers and sisters in Christ to pray for Mike while he sleeps. I know you promised that Mike can't be snatched from your had but you also told us all to pray. It's going to get loud.

I know I keep asking about your timing. And everyday you show me the blessings you are giving Mike and me through this pain. Thank you for always knowing what's best and having my back.

CF got much bigger than Mikey God.
And Mikey's legacy is getting much bigger than me. Help me to help them too God. It's not just about Mikey and me. There are so many that need your comfort.

Can you help them all to "love it forward?"
There are dancers and brothers and siblings and CFers and moms and dads. And maybe God, if you don't mind, you could get them all together. So that we can all feel comfort during this game plan.
They all need this peace that you've given me and Mikey, K?

Hospice nurse said you are coming soon so I'm going to go get ready now. I hope I am in the room when you get there. I told Mikey I would put his hand in yours because he will be sleeping. It's all part of the plan God, Right?

We patiently await your arrival. Thank you God, I have peace. My heart is so full.

Dear God

It's me again

Thank you Father because I still have peace.

I hope you don't mind that I'm using social media to talk to you. You must not mind because you created it. It's just that I have all these sisters and brothers in Christ praying over me right now and when they know what's on my heart they pray it with me. That makes it nice and loud so I know that you will hear me.

Job used to pray for his sons and daughters in case they were naughty, remember that? He did that before you took all of his sons and daughters to heaven in one day. So I'm going to do that too. I know that Mikey sinned God, I know he did. I wasn't always the greatest example. Please forgive us.

Mikey is still here God and he's fighting really hard. Thank you Father for giving me this awesome son. I love him. I tried really hard to do a good job. I know I messed up sometimes but I know you knew I couldn't be perfect. You blessed me far beyond anything I deserve. That is so cool about your Grace and forgiveness God. Only you could come up with something as cool as Grace.

I'm just kinda wondering God, if my son's work down here is going to be done pretty soon. I'm not complaining God you see my heart. It's just that he's getting pretty tired now. And I'm getting ready to let him go. I'm OK that it is your turn when you are ready. You are such a good Father. I know you are the only one who loves Mikey more than me.

CFers are gonna fight God. Remember when we taught Mikey how to do that. You called it discipline. I used to tell him that if I didn't make him obey you then I would be sinning too. He was a pretty obedient boy and you forgave all the rest. He's been doing this fighting thing for 31 years now God and I think he doesn't know how not to fight.

We taught him all about you too God, remember that. Yep, his baptism, then the Holy Spirit took over and voila - faith growing like a mustard seed. He hasn't forgotten that either. That faith has stood firm - just like you promised. I don't think he doesn't know how not to have faith.

Just as sure as Mikey isn't going to lose his faith God, he isn't going to stop fighting. But I'm thinking it is time for him to stop fighting and I can't do this by myself. I've told him it's OK to go now. We made a plan. But I'm thinking that, seeing that you're his Father and all, that maybe if you tell him it's OK to go . . . well, then he could go grab that crown of glory you have waiting for him.

I'm not complaining God, really I'm not - you see my heart. It has been such an honor to take care of this boy you gave me. It truly has. I enjoyed this assignment you gave me of being Mikey's mom. But you tell us to take all our petitions to you and you hear them. So I just thought I would do that again here tonight God, because I know you're still up. It's getting pretty hard to watch him suffer. He's so tired but you know Mikey he wants to keep being obedient.

No, don't worry, he's not in despair. He called his cousin Gary in the middle of the night tonight to thank him for his service. You see he and Gary went to school together and Gary is a Ranger and Green Beret. He's done two tours over in Afghanistan and just got back from 6 months in South America. I know you know all about that because you must have been there too, keeping that son safe. Mike just wanted to be sure he got to tell Gary he loved him and appreciated his service. So I know Mike's heart is still good.

Like I said, Mikey and I have a plan but we know that your plan is always the best plan. Yes, you taught us that too. So we'll wait for your perfect timing, truly we will.

Thanks for listening God. I'll be waiting for your answer.....thy will be done.

P.S. God, thank you for giving me Mikey. Do you remember when I prayed and asked you for him? I couldn't have imagined how special this gift would be. Thanks for answering that prayer too. I know you always answer prayer truly I do. Love, love, love God - you taught us that too.

Thursday, September 25, 2014

Dear God,

Can you hear me?
I knew you could
I know you know what I'm going through
I know this because you had a son too
And he suffered too
He suffered so much more than Mike or I or anyone else 
So I know you know how I feel - it gives me comfort right now
And I just want to thank you. Because as I watch my son suffer I can only partially imagine what you went through.
Thank you for bearing through it . . .
For me .  . .
For my son . . . so that we will not have to suffer what your son did.
You have never left us. You are right here giving us peace.
But your son didn't have that pleasure. He was abandoned.
Right now, maybe more than any other time in my whole life I appreciate the gift you have given us.
How you suffered too but you still gave up your son for us. It is awesome Grace.
My heart pours out with thankfulness.
It even makes me feel privileged that you are allowing me to go through this suffering so that I appreciate all you and your son have done for me and my family. Thank you for knowing ahead of time how Mike and CF would bless us.

You are sending lots of people to me right now.
I want to thank you for that too.
I need each and every one of them.

I would like to keep my son all to myself but you didn't keep your son all to yourself so I'm trying to live by your example and I am sharing Mike's last moments with others. Thank you for that opportunity.

No I didn't forget, God.
I know Mike is your son and I need to give him back to you soon because you miss him too.
Thanks for talking to him everyday through his walk. It gave him great comfort.
It gives me great comfort now too, to know that you two have always been best friends.

So I just wanted to send you a quick note to let you know how much I appreciate all that you have done for us and all that you are still working out for us. I thank you and praise you. All glory and honor be yours now and forever. You ROCK God, You Rock. Thank you for giving us peace.

Thank you for giving us Mike.

No more words right now God. You'll have to look into my heart to see the rest. Talk to you soon.

Thanks too for the love, love, love.

Love, love, love.

Wednesday, September 24, 2014


Quick update. Mike came home with Hospice today. He got to see family and friends this evening. A new found spirit about him. This is what he wanted.

So many emotions.

I know there are other CFers and CF moms out there that are watching our journey. I have promised in this blog to keep it real. That is a gift that we can give each other. Sharing our experiences to help others on their journey.

I have never been one to blow sunshine. I wouldn't know how to start now. But I'm sure it could look like that. I want to assure you that there is still peace.

The deepest sorrow I have ever felt - but I still have peace.

You haven't gone through all I have in my life without understanding what not having peace looks like. There is that huge knot in your stomach that feels like it is an ulcer. Your mind spins out of control with despair.

But I want to assure you that even with this sorrow there is peace. Minutes later there is joy and thankfulness.

CF has gotten to be "much bigger than Mike" to quote from Alex Deford but CF is not bigger than God. It is not bigger than prayer.

This is difficult - but so many people are praying us through this.

As we transition to hospice at home our journey takes on a new level of difficult. Will you please continue to pray for us? Please don't forget about us. We can't get through this alone.

Thank you so much. Peace to you - there is peace.

God give us strength!

Be still and know that I am God

This was the most emotional day of my life.

I am sitting here waiting for sleep and I am praying for peace. I am thinking about all my brothers and sisters in Christ and I am hopeful and confident that you are continuing to lift us all up in prayer. I pray this finds you all at peace as well. I am becoming more and more conscious every day of the incredible impact the man I call son has had on the lives of so many and I pray for your peace also.

Mike had a pretty good day. What does that mean? He had times of blessed peaceful rest and he had times of comfort with family and friends. He lived this day . . . fully.

Pastor Haugly came down and blessed us by reminding us of God's promises. Have I said, "God bless that man?!" God gives us just what we need, exactly when we need it and today it came in the form of Pastor Haugly.

There are so many things in death that try and take away our peace. But we don't have to let them. I don't know if I fully understood that before today.

Choices need to be made. When we are tired and weary these choices can seem overwhelming. But then we need to pause - be still and know that I am God. We are not calling all the shots here.

Yes, I have choices and Mike has choices. But God chose the time of Mike's Grace before Mike was even born. After being still and listening to God's promises once again, I was reminded that I don't have to have any worries. There is no way Mike's life will be made one minute longer or one minute shorter than God wills it to be. . .than God has already planned for it to be. Thank you my heavenly Father for carrying this burden for Mike and for me. This brings me peace. 

Thank you all once again for your continued prayers and support. I had a few moments today . . .I did, I surely did. But God put my friends and family right where I needed them to be and I got through those fleeting moments and I found my way back to God's peace. It's always right there - God has it right there waiting for us to grab on to.

I talked incessantly today. Everyone was so patient with me. God gave me words and answered my questions - exactly when I needed Him to. Thanks to all of you He used to bless me in this way.

I am in AWE.......of all the love that is being shared by so many friends and family through this experience. I can feel it. Mike can feel it. I can't put into words what a comfort it is to watch Mike get to experience all this love. All the love Mike gave away during his life is now coming back to comfort and support him in his death. So often I see people die without having known how others feel about them. Without knowing the impact they made on other's lives. We somehow think that we can whisper death away. That isn't how Mike lived and it isn't how I would want him to die. I am so thankful. Mike is thankful and it brings him great peace.
Telling Mike how you feel right now is giving him validation for this fight he has fought. It is telling him that his life mattered and my friends, that is why we are here. To glorify God with our lives and Mike has done that and in so doing his time of Grace will soon end. Well done good and faithful servant. And now dear friends it is time for comfort and peace. For Mike, for you and for me.

John 14 Do not let your hearts be troubled. Trust in God; trust also in me. In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you. And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am. You know the way to the place where I am going."

Thomas said to him, "Lord, we don't know where you are going, so how can we know the way?"

Jesus answered, "I am the way and the truth and the life. No one comes to the Father except through me." And that will be exactly when I have decided it will be . . .OK, Jesus didn't say that last sentence. I'm just reminding myself ;)

Please, please, please continue to pray for all of us. This journey makes us weary and prayer keeps us going.

Michael Richard Van Deurzen, Jr.
He's My Son

Peace, peace, peace.

Tuesday, September 23, 2014

You know you are loved when . . .

Your little brother sings you a lullabye hymn . . .that he picked out on his own from his memory....because he knew it fit the occasion perfectly.

When you are sick, when death draws near,
This truth your troubled heart can cheer:
Christ Jesus saves my soul from death
This is the anchor of my faith!

Security has to be called to ensure all your friends have enough space to park

And all your brothers come

And good friends come from miles and miles away
and wait for hours
just to have the chance to say good bye.

                And your Uncle draws an awesome picture
of you while he is thinking about you.

And your very favorite nurse in the whole wide
world can't hold back the tears any longer

       And your little brothers sing their memory work hymns to you.

And the most precious NP in the whole wide world comes to your bedside to reassure you that things will go exactly as you would like them too. To continue to give her love and support and make sure that every last request is fulfilled.
And more uncles fight back emotion and play his guitar to ease the tension in the room
And your sister stays by your side and holds your
hand to let you know she is there.
And you know you are loved . . .
When you can feel the love from all your sisters and brothers in Christ lifting you up in prayer...
And you have peace.
Peace I leave with you; my peace I give you. I do not give to you as the world gives.
Do not let your hearts be troubled and do not be afraid.
John 14:27
Thank you all for your love, prayers, support and thoughts. You'll never know until you go through something like this how much it helps. Mike is hanging on. He has been a little more alert tonight which is such a blessing for those of us who want to speak to him. But most importantly - he has peace. We all have peace.
Love, love, love.

Sunday, September 21, 2014

The Final Round

Mike has taken to the analogy of One More Round. He even has it tattooed on his chest. He told me he wanted to get this tattoo so that when he went in for surgery the doctors would see it and know that they should continue to treat him - he wanted One More Round!

I think that it is important for all the folks who know and love Mike to understand he is in the final round.

Whether he makes it a few more days, a few more weeks, a few more months or more is yet to be determined. One thing we can count on is that Mike will keep fighting.

Mike has shared with us and with many on the hospital and clinic staff that he has had a good life. You are all a part of that - what a blessing.

He has gotten to do all that he has wanted to do. He has lived fully.

Much of Mike's life has been difficult and this final round will most likely not be much different. To say it is difficult does not rule out any of the blessings or beauty that it is or has been.

I have been amazed on more occasions than I could possibly count, at how Mike continues to live life so fully. When so many others - myself included - are whining over trials of miniscule proportion compared to the realities that face Mike and other CFers on a daily basis, he presses on with grateful intention. He plans....he executes....he thinks of others before himself.....he lives.
Philippians 2:3 Do nothing out of selfish ambition or vain conceit but in humility consider others better than yourselves.

I believe that because death has been a reality for so long, something that has been a part of his every conscious thought and decision, it has given him his insatiable appetite for life. 

I believe that this will be the legacy he  leaves for those of us who are fortunate enough to know him. For all of us whom he calls mom, dad, sister, brother, aunt, uncle and friend.
 I'm no theologian . . .
Sitting here in reflection I pause. . .
My thoughts are scattered and heartfelt. . .
I am thankful for the blessing and privilege of this gift of a son that God has blessed me with. My heart leaps out of my chest with all the thankfulness and praise I have to my God for honoring me with this gift and all the experiences I have had with Mike.

Because of Mike
     I love more deeply
Because of Mike
     I am more accepting of others
Because of Mike
     I am more forgiving and accepting of forgiveness
Because of Mike
     I judge others less
Because of Mike
     I will live life with grateful intention
Because of Mike
     I will live life more fully

In reflection there is only love.
Love keeps no record of wrongs.
I can testify that these words are true - sitting where I am sitting now - there is only love. Truth.

Mike told his father and me that he kinda feels badly for us because we will have to bury him. He will fall asleep in Jesus' arms and awake to paradise. With no time constraints on the other side, everyone he knows and loves will be there in heaven with him. He knows that we will miss him until we are reunited in heaven some day. 

We assured him our hearts will be full with all the loving memories we will have from a life well lived. We couldn't have imagined when we held him at birth, all the love and joy he would bring to our lives. We are filled with gratitude.

I have no greater joy than to hear that my children 
are walking in the truth. 3 John 1:4

Mike is giving us a wonderful gift. We will not be burdened in his death with having to wonder . . We know he is a child of God and he will be living with the One True King.

Live on sweet son, live on. 

Press on toward the goal.

Forgetting what is behind and straining toward 
what is ahead, I press on toward the goal to 
win the prize for which God has called me 
heavenward in Christ Jesus. Philippians 3:13

It is an honor to share and be a witness to your final round.

Love, love, love
Mom and Dad
P.S. Thank you for respecting Mike's wishes during his final round.
P.S.S. Mike would love to hear from you. If you would like to share any thoughts with him please feel free to do so in the comments below. He will be able to read them or we will read them to him as time permits.

Peace and blessings to you!

Saturday, September 20, 2014

Not out of the woods . . .

Happy to see this when I got here on Thr.
It’s been a very rough week here for Mike. A CT scan showed some pneumonia and a small hole in his upper right lung. To treat that they turned up the oxygen a bit. That actually seems to be better as of this writing. This is a good thing because that means they can use the Cpap and BiPap to give his lungs a rest.

Heparin shots were started to ward off a Pulmonary Embolism while Mike wasn’t moving much. By Thursday he was able to get up and we walked down to the cafeteria. He had some ice cream before we walked back to the unit.

On Friday his cousin Derek visited and he was able to get outside to enjoy a bit of that beautiful late summer weather we are having. He also got to go to the cafeteria to get some more ice cream. The doctors were very happy to hear Mike got to go on a couple walks with Derek. Mike enjoyed his visit very much.

Today is a bit more of a fight. CO2 levels are rising. Hard to get the pain under control and still maintain oxygen levels and all that good stuff.

The doctor would like to move Mike to a higher care unit but he is resisting for now. He has agreed to use the BiPap for a while, especially when resting.

Mike is not out of the woods but wants you to know he is fighting. He would also like to thank the brothers who were able to help Katie today. He wishes he could be there with you but knows you are taking good care of her and helping her get done what needs to be done.

Mike asked me to take and then post this picture.
Mike wrote on a piece of paper to please add this caption "this is one of the many things I have to do to stay alive."
I was able to talk to his doctor today and she said that they did an x-ray this morning and it looked like things had improved a bit. Baby steps in the right direction. The picture above is with Mike on his BiPap. It is helping his lungs get some rest but he isn't able to communicate very well. After a few attempts at writing on paper he decided to do what he does best - text.

All of us parents have joked about texting our kids in the next room but I gotta tell ya, I was very much relieved that he was able to text me what he wanted to say and I could text him back - even though we were less than 2 feet away from each other. Hard to talk and hear with that thing on. Love it when technology comes through.

His oxygen sats are staying nicely at 95% or higher with this on so we are very thankful for that. Without it he goes down to around 84%.

I know the question we all have right now. How much time does Mike have left? Like you, I wish I had that crystal ball that tells us exactly what that answer is. Doctors can't answer that either. I'm frustrated because I thought we would know that better by now.

I had a conversation with Mike's NP the other day. I asked her if she thought Mike will get through this. She said of course we don't know for sure but he is such a fighter she believed if things could continue to move forward he would. I thanked her for her honesty. I shared that I believed that one of the blessings of CF is that it has caused us to look at mortality from the very beginning. For that I am thankful. She said she has wondered if that was really a blessing for CF families. I'm sure that it is different for each family but I assured her that for us it has been a gift.. I believe most Christians would agree.

I know that I have lived more days than not realizing that life is fleeting. I believe Mike has also.

Teach us to number our days aright,
that we may gain a heart of wisdom. Psalm 90:12
With each declining PFT report we have the opportunity to be aware of Mike's mortality. In so doing, it makes us all more aware of our own mortality.

Ecclesiastes 7:2 It is better to go to a house of mourning than to go to a house of feasting, for death is the destiny of every man;
the living should take this to heart.

So rather than go crazy and become obsessed with how much time he has left, Mike chooses to live out each day - kind of as if it were among his last. As the time becomes apparently closer to the time he will say good-bye, there is a temptation for those around him to become anxious and in so doing try to "fix" things. He wants you to know that he is doing everything he can endure to make the most of his time left.
"I just want everyone to appreciate
the time they have left with me."
In other words, he feels badly when someone suggests - no matter how well meaning - that if he would just eat more maybe he could stay out of the hospital longer, etc. If that were true that would mean there is something Mike could do to change what is happening and that is not truth. Thank you for understanding.

One step at a time. We'll keep you posted. Hope all is well with all of you.

Blessings to you!

Tuesday, September 16, 2014

9/16/14 Admission

Mike was admitted to D6/526 this afternoon. He asked me to please post an update. As you know he was admitted just a few weeks ago and spent a week here with pulmonary exacerbation and bowel obstruction. He went home on IVs that he did for another week. He wasn’t feeling that great but he and his NP decided to stop the IVs for a week. He would be admitted tomorrow then spend 9 days here and God willing be able to attend MaKayla’s wedding on September 27.

As we all know plans don’t always go as we would like. Mike started having quite a bit of pain on Saturday. This was a more intense pain then he has had in the past. He also started to feel like he was hyperventilating. So he needed to increase both his oxygen and pain meds. He couldn’t go but a few steps without O2 and feeling frantic. Not a feeling he has experienced before. By Sunday the bowel obstruction started to return. He was one miserable cookie.

He called down on Monday and they started to prepare for his arrival today. He hasn’t been able to get to far away from his oxygen concentrator so this has caused a few issues with back and leg pain. We loaded his portable oxygen tank and headed out. About 25 miles outside of Madison he ran out of air. Bummer.

Looking back (through the lens of thankfulness and having survived) we kind of must have looked like a Laurel and Hardy episode. Driving down the middle of the highway Mike pulling on the tubing . . .then digging in his pockets franticly . . . I’m trying to figure out if there is a hospital sign close . . . finally Mike says, “pull over, pull over…there, right  up there!” I took the exit and as he reached for his door handle and realized there was no way he could get out of the car and still breathe he says, “Go in the trunk and get my pain meds.” I finally got it.

He thought he had put some in his pocket – nope. Pain meds would slow him and his breathing down so we could make it the rest of the way. I got them and he took them and I floored it. By the time we hit the campus he had his window rolled down. I know that does absolutely no good but when you feel like you can’t get air – well, it doesn’t hurt anything. Then we just had to get him into the hospital. We discussed our plan quickly. I knew if we drove around back to the ER it would still take a bit to get to oxygen. We opted for admissions. I pulled in front of the doors and helped him to a bench, ran back to the car and sped to the parking deck. Of course, there was no parking on 2nd, 3rd, nope not even the 4th floor. You got it – 5th floor. I ran down five flights of stairs as fast as a fat old lady can go (what a spectacle I must have been) trying to be nonchalant, yeah right! Grabbed a wheel chair and pushed him into admissions. Literally, 10 minutes later he was on the floor and on oxygen.

His Oxygen sats were 89 and perked right back up to 94 quickly. Unfortunately, his heart was racing at 132 (after sitting silent on his bed). YIKES!

Stats: Fev1 - 17% 25/75 5%. Weight 113 lbs. Chest X-ray – lots of plugs.

Things are pretty rough for Mike right now. He is still fighting the slow moving intestines – probably a result of much needed pain medicine. Lots of chest pain – NP is making sure they are checking everything for possible causes. She did and EKG and she said it had declined since the last one they did. They are checking into that. CO2 levels were good at 45. PO2 was 29. His body is definitely struggling to get him some good O2! Troponin (heart) was good at <0 .02.="">

She prescribed some IV morphine and he is finally getting some relief from the pain. He will do golytely for a day or so and then switch once they get his sleepy intestines moving. She feels once he gets some fluids he will be good to start the antibiotics – Vanco, meripenim, and Tobra.

Many times I hear people say to me that they want to pray for Mike but they don’t know what to pray for. I made a list and shared it on Facebook. I will also share it here. A while back I felt the same way and these are a few of the things I came up with that I could pray for, for Mike. They are great things to pray over anyone when you aren’t sure what to pray for:

Patience - to endure this suffering
Strength - as this battle makes Mike and all of us who care for him weary
Comfort - Mike is in a lot of pain and discomfort
Understanding - Not only Mike's understanding of what God's plan is but also that other's understand their part in this also

Acceptance - of God's perfect plan and timing.
Joy - As Christians we are given joy and blessings in all things. Prayers that Mike can experience those joys
Peace - that surpasses all understanding. Peace that only God can give.
Trust - that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection - of his soul - no one can snatch him from the Saviors hand
And of course for healing - thy will be done.
Acceptance - of God's perfect plan and timing.
Joy - As Christians we are given joy and blessings in all things. Prayers that Mike can experience those joys
Peace - that surpasses all understanding. Peace that only God can give.
Trust - that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection - of his soul - no one can snatch him from the Saviors hand
And of course for healing - thy will be done.
Acceptance - of God's perfect plan and timing- of God’s perfect plan and timing
Joy - As Christians we are given joy and blessings in all things. Prayers that Mike can experience those joys
Peace - that surpasses all understanding. Peace that only God can give.
Trust - that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection - of his soul - no one can snatch him from the Saviors hand
And of course for healing - thy will be done.
I'll send updates when I can . . . Pastor Haugly was just here . Bless that man!

Peace – That surpasses all understanding. Peace that only God can give.
Trust – that Mike and all who love him continue to trust that God is working this all out for his and our good. All glory and honor be his now and forever.
Protection – of his soul – no one can snatch him from the Saviors hand
And of course healing – thy will be done.

I can't tell you all how much power there is in your prayers. Yesterday, I was a bit of a mess. My stomach felt like I was getting an ulcer. I contacted a few of my prayer warrior friends and put the requests above on Facebook. Today - through all the ups and downs - I had peace. Thank you all for your prayers and support.

Mike has a new doctor on his team. He specializes in palliative care. Balancing the pain meds and antibiotics can be tricky business.

Mike is winded and having trouble talking for long periods. He will jump on Facebook when he feels up to it. Hopefully, he will get some much needed rest.

We are so thankful for the staff at UW Madison’s D6/5 unit. They are so patient and thorough. God bless each and every one of them. Erin is on tonight – we are so thankful!

Blessings to you!

Saturday, September 6, 2014

Home IVs and Soccer games

Quick update on Mike: he left the hospital earlier in the week and is doing IVs at home. His patience was out and he needed the change of scenery. He came home on two different IVs Vancomycin and Cefepime. He is also taking Cipro orally. He does them at 12, 8 and 4. So far so good. His bedroom looks like a closet at the pharmacy but he's workin' it.

Mike was able to get out and about today and is helping to grill some brats and burgers at the clubhouse. What a beautiful day!

Great day for a soccer tournament.

Richie scored his first goal as a high school student with a header in the first game.

Way to rock it Richie!!

I took about 700 pictures during the two games. Just can't help myself once I get out there. Too much fun!!

It really was pretty fun. And for that I am thankful. It's hard for me to admit this but it is getting pretty hard for me to leave the house these days. It's not something you plan or even think about. It just kind of creeps up on you.

A few babies later in life. Fewer and fewer peers.

More and more hospitalizations for Mike. Isolation at the hospital.

Money constraints so out and about less.

As CF progresses things can get awkward (to coin a word from this generation).

So I am thankful for:

parents who glanced my way, instead of avoiding eye contact . . .

the people who stopped to chat and say hi . . .

Linda, who came over to invite us to participate in a tailgate at next weeks tournament. . .

my sister-in-law who invited me to put my chair next to hers when Paul couldn't come to the game with me . . .

Thank you to all of you who helped me fight the temptation to be reclusive today. These little acts of kindness really do mean so much.

Ecclesiastes 7:3 Sorrow is better than laughter, because a sad face is good for the heart.

Blessings to you!

Monday, September 1, 2014


Happy Labor Day!

Mike was admitted to the hospital on Monday, August 28, 2014, after spending most of the prior weekend in pain, with what he suspected was a bowel obstruction.

Mike had been to the clinic on Friday. He has been coughing a lot and his nose has been running like crazy. His FEV1 was 27% and 25/75 was 3%. He and his doctor decided to try and keep him out for another week. He was put on Bactrim and another antibiotic and prednisone. Thankfully, his oxygen sats stayed above 92%.

Mike and I were able to go out for dinner on Friday. We went to Salty’s and had fish. On Saturday Mike started to have some uncomfortableness/pain in his stomach. It is hard to know when you have CF where that is coming from. Most CF patients live with chronic stomach discomfort or pain to some degree on a daily basis. Between the constant hunger and undigested food there is discomfort. It is hard to know if eating more will help (hunger) or eating less (bowel obstruction) is the thing to do.

He didn’t eat a whole lot all weekend. You kind of get into a catch 22. I sensed his electrolytes were getting out of whack. By Sunday he knew he needed to go in. It was just a matter of when and how.

I took Mike down Monday afternoon. His electrolytes were off and they started the liquid drano before I left (also known as golytely). Mike works so hard to gain weight and maintain it but this incident plummeted him down to 118 lbs. He struggled between being hungry and wanting to eat and fighting the obstruction. The constant coughing which increased the overall pain level was frustrating. Which brings us back to more of the catch 22.

Mike has needed to increase his pain meds, especially at night. In order to sleep, he needed a stronger drug to negate the pain to allow his body to fall into sleep. Most of us can relate to this. Some ache or pain that prevents us from falling asleep and we pop a couple ibuprofen or aspirin and voila – sleep. Pretty much same scenario only obviously on a larger scale.

Well, stronger pain meds have other side effects - like slowing down an already taxed digestive tract. Thus the catch 22.

Still coughing a lot and nose dripping constantly, Mike asked for another CT scan of his sinuses. Mike has had over 14 sinus surgeries. He grows polyps in his sinuses (10% of CF patients have this issue) that put pressure on his eyes and even sometimes his brain that cause headaches. The polyps also obstruct things and cause mucus to get trapped and become infected. This nasty infection then drips down into his lungs causing them to get re-infected. In the past, we have found that when they become blocked having surgery can give him up to a couple years of relief from the headaches, drainage and infection. It has been about 2 years since his last surgery.

The CT scan shows that his left side is completely blocked and his right side is bad but not as bad as the left. However, (deep breath here) Mike’s doctor does not feel like he could for sure survive the surgery. As we know, if they needed to intubate he would most likely not come off of the vent. Barring the vent situation she does not feel that the benefits of the surgery will outweigh the risks. In other words, having the surgery could be too much for him and send him into a downward spiral.

So there you have it. The good, the bad and the ugly we call today.

The good – another day of God’s Grace. Another day of living life to its fullest. Another day of our sisters and brothers in Christ holding Mike and all of us, up in prayer. It is a gift.

The bad – CF progresses.

The ugly – with the blessings of medicine come challenges. Mike has so much coming at him right now. Just the side effects of all the meds would be enough to put anyone over the edge. They wreak havoc on his body but most remarkably his emotions. Up one minute, down the next, anxiousness and peace, strength and weakness. Hard to regulate. The prayers of others and God’s divine Grace and intervention are the only things keeping Mike’s head above water as he continues to live each day while CF progresses.

And live he does. He is going to be here for a while. Perhaps a couple more years, perhaps not. He will be up and about sometimes and the next day he may be struggling to walk. He’s going to need your continued prayers and support. He needs your unquestionable understanding and forgiveness – it’s called love. He gets annoyed and impatient as he deals with this roller coaster ride of living he is on. He’s getting tired but he is still trying to make the best of what he has been given. He will continue to do all the things on his heart until his body tells him, no more.

Thank you to all who are still here for continuing to support Mike and all of us who love and care for him.

I will continue to update this blog as God gives me strength but quite frankly, there are some days when I’m not sure . . .

I know how much it means to this huge family to be aware of what is going on. It would be even more difficult to talk this all through to all those who, in love, want to understand what Mike is going through.

I am also aware of those who stop by from all over the world to watch Mike’s journey. When Mike was a small child it gave me great comfort to speak to the families I met while in the hospital about their journey’s with CF. It helped me to understand what they were going through. It helped me to be aware of what might be ahead….. etc. With HIPPA and isolation of CFers, blogs are one of the few ways we connect with each other. Just please remember, every person’s journey is different. The journey of children born now with CF will be so much different.

I would just ask that if you have a hard time with my blog that you step away for now. No condemnation. No judgment – on either side. I’ve always said I will keep it real and I am being true to that.

Lead by Mike’s example and God’s command, we are all living life to its fullest. Yes, some of this is sad, bad and ugly but God is so much bigger than CF. The majority is peace and love. There just isn’t space or time right now to share it all.

1 Corinthians 13:4-8

Love is patient love is kind. It does not envy, it does not boast, it is not proud. It is not rude, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres. Love never fails.

Love and peace to you.