I just got back from visiting with Mike. I love that young man. He is having a rough time. Two weeks in a small room, IVs, meds, doctors, nurses, students . . . it is all trying his patience.

He doesn't feel a whole lot better. I pray the numbers come up.

He knows others (family and friends) feel badly that he is sick and not doing well. . . he doesn't like to think he is causing anyone else pain . . . and he knows it is the CF but it is hard for him to separate. He is struggling.

I am praying for him. I hope you are too. He is strong and brave and such an inspiration to me.

Thank you for the prayers and support. Blessings to you. Love, love, love. Truly, deeply . . .

P.S. He asked me to tell Uncle Bob thanks for letting him borrow the guitar.

F I G H T

MRSA

It's MRSA that is growing in Mike's lungs. The word fight takes on a whole new meaning. Mike is so brave and he puts things into perspective. The doctors are trying a different medicine to fight the MRSA and we are praying he will be MRSA free after this fight. He is thankful that he still has the option of transplant, despite this news. He is planning to stay inpatient for most or all of this hospitalization. FEV1 is at 26%.

Please keep Mike and our family in your prayers. He will have to fight even harder on this one. He will be on Vancomycin and it runs 4 times a day at 3 hours each. This will be on top of Cipro and Zosyn. Each one of those will run 2 times a day for an hour each. Of course, this is in addition to the insulin and all other CF meds and treatments. Our church is having prayers for him this weekend. He will need strength, patience, and perseverance. I am so blessed that he has such a strong character. I love you Mike, fight, fight, fight.

James 1:12 Blessed is the man who perseveres under trial, because when he has stood the test, he will receive the crown of life that God has promised to those who love him.

Blessings to you!

Congratulations to Jeremy! I have a brother-in-law in the State Assembly.

Back IN

Mike is back in the hospital.

Four weeks ago yesterday he got off of IVs.

Today they accessed his port successfully.

The doctor said he is growing something new in his lungs.

Mike couldn't remember what it was.

They are going to try 3 IV medicines this round.

I'm hoping to talk to the doctor tomorrow to find out more.

Mike will have PFTs tomorrow and I will post numbers when I get them.

Keep Mike in your prayers, please. And if you are on facebook - stop by and tell him hi. You can send cards to the address a few blog posts ago. He is going to try and stay inpatient for most of the visit.

Thankful that God is granting me peace. Love to you. Blessings!

Waving to grandma Kristi! Thanks for the note!! Will type more soon :)

The Talk

Mike Update: Mike is going downhill quickly this round. He got off of IVs two weeks ago yesterday. Today he got back on oral antibiotics (well he is always on some but now they pulled out the big guns). He started on 750 mg of Cipro and 500 mg of Dicolxacillan today. He is coughing until he almost throws up - it seems almost constant. He went to visit Katie at her work (more about that in another blog post) and she FORGOT to tell him they have an elevator, gshhh. He is helping teach dance at a local high school. He wants to stay out of the hospital until the performance. Two weeks - hang in there Mike!

Left: Mike with his new little brother Richie at 1 month old.
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I broke the golden CF rule. What is the golden CF rule? It is - blame CF, not the CFer, or the mom or the dad . . . CF stinks, not Mike or me or anyone else.

I had "the talk" with Richard. Richard is 10. Paul and I felt it was time. Richie has been dreaming about elaborate vacations as a normal 10 year old does. He wants expensive toys/electronics and asks to have kids spend the night. We have never had an extensive talk about CF. He hasn’t had many questions. But as he is getting older and more responsible Paul and I felt it was time to give him more information, to enlist his help. To ward off the possibility of him hearing something from someone else and not us first.

Mike's Senior pictures. He took his "little buddy" with him.

I took Richard out to lunch. I began, “Richard, do you know what Cystic Fibrosis is?”

“Yes,” he answered. “Mike has CF. That’s when your lungs are too small. So he (Mike) coughs a lot. . . (his thoughts trailed off for a moment) and he has to go in the hospital a lot because of that.”

“Well,” I began as I collected my thoughts, somewhat shocked at his lack of knowledge, “It does have to do with Mike’s lungs but they are not too small. . .” I then proceeded to tell him what CF is. He heard words like, infection, 50-100 pills a day, starvation, fatal, and money. His eyes kind of bugged out of his head as they got as big as saucers. He hung his head when I told him Mike’s life could be cut short by CF. I explained that we might not get to go on vacations to Disney World because CF can be expensive. I continued that Mike has to go to the hospital about every 6 weeks now and it costs lots of money. I explained about infection and that it is hard to have kids over. I explained how we have to be careful about germs and that is why mom always pushes the antibacterial lotions. I explained that he can help by helping to get things done around the house because Mike can’t help as much anymore. I told him he will be able to help his brother with things. He seemed to feel better that there was something he could do. I then told him to please not discuss this with the neighbor boy because he has two young sisters with CF and I told him it was up to his parents to talk to him. He said he understood and said the neighbor boy had told him his siblings had CF too. He seemed comforted that he wasn’t the only one dealing with a sibling with CF but understood not to talk about it with him.

I could tell he had had enough. I reminded him that God would provide and that we have our faith to lean on. He wasn’t sad but quiet. He is kind of a quiet kid. I was uncomfortable and didn’t feel like the talk went very well. I said a silent prayer and asked for the right words about half way through. I ended the conversation because I sensed it should end. We went home. Richard started his homework a few hours later. While he was doing his homework Mike came into the kitchen to get something to eat. He proceeded to have one of the worst coughing attacks he had ever had in front of Richie (next to where Richie was working). I was in the other room and peered around the corner. It wasn’t an intense attack that Mike sometimes has - the kind that makes him almost collapse and/or throw up, it was just kind of long. I noted the look on Richard’s face. He wasn’t looking up at Mike but intentionally looking down at his books and I knew.

I was online later with another parent (my age amazingly enough) who has a son who is 10. I wanted advice earlier but they weren’t online. I told this person about what I had done. As I typed, the thoughts of the day clouded my conscientiousness and remembering the look on Richard’s face disturbed me. I started thinking I had made a really bad decision to have this talk with Richard. I started thinking about how I had taken away his innocence. I thought about how Richard would probably never look at Mike the same again. Mike’s cough that had once seemed none threatening would now mean so much more. I felt I had burdened Richard’s little heart with too much. I started to melt down. The flood gates started to open and I could hardly see the computer screen. I was barely conscience of what I was typing – or trying to type at that point. I only remember this person typing the words, “He will be brave. He will be a soldier.” I got off the computer as quickly as possible because I needed to pray. I prayed and God immediately reminded me of the golden rule.

I had always taught Mike and Katie that it was OK to get mad at CF. It was OK to hate CF. I taught them that it wasn’t Mike disrupting our family or causing any pain – CF did these things and it was OK to not like CF. I was beating up on me. I was blaming me for burdening my son’s heart. God has allowed CF in our lives and he promises in Romans 8:28 that this will all work out for all of our good. God has a purpose for Richard to have CF in his life. Far be it from me to try and change that by putting up barriers to God’s will or God’s plan. I thought again of the words, “He will be brave. He will be a soldier.” Yes, he will be whatever God wants him to be because he seeks to do God’s will in his life. I am here to support him. I’m glad someone was there that night to support me and remind me of the golden rule during my momentary lapse in judgment. Thank you friend.

I hadn’t shared the golden CF rule with Richard in our talk – it’s the missing piece that made me uncomfortable. We will talk again.

God provided me with good counsel when I was ready to break. I opened my email the next day and there was such a nice message from Dana. She complimented me on my parenting after reading the post about Richie’s soccer experience. God continues to show me that HE is in control and providing for me and my family. Not me. He continues to give me exactly what I need when I need it.

I love Mike. I don’t like what CF is doing to him. God has a plan. We humbly submit to His plan. We trust in His promises. I am full. Shalom. Love, love, love.

P.S. I have a dream. More to come.

It's Official . . .

. . . I'm a soccer mom. Yikes. But as promised a Mike update first.

Mike update: Thank you to all those who have called, emailed, facebooked or gotten a hold of us somehow. We are glad you are here and we appreciate the support. Mike is having a hard time with patience. It is hard to spend as much time as he does, isolated, in a small room, 2 hours or more away from home. The woman in the room next door keeps him awake and has made rude comments that, of course, he can hear.

Mike went to take a walk yesterday and some teenagers stared at him when he got on the elevator. Mike has to wear a mask etc., when he leaves his room. You know, it's kind of like anything else, if I'm in a bar and someone treats me rudely or makes an inappropriate comment, I may get upset but I do take into consideration the fact that I am in a bar. Now, if I were at work and that happened I might not take it so lightly. Know what I mean? Mike doesn't appreciate rude stares and nasty comments while in a hospital. It is a hospital! I know he is sensitive to all these new things he has to do because of CF - oxygen, masks, ports and tubes in his chest and stomach - who wouldn't be. But truly I want to believe others look and wonder out of concern. It is just hard to deal with as we all know. We pray for Mike's patience.

He also didn't sleep well Friday night. He woke up with a stomach ache and had to stop the night feedings. This was Mike's facebook entry from yesterday:

Mike Vandeurzen: hates the weekends in the hospital they go by so slow

And his blog post from the day before he was admitted:

Mike Vandeurzen: u have nocked me down many times i have goten back up i no u come agen to nock me out but i will tuck my chin in put up my hands n fight i am a cf fighter n this round is mine

Many of you have asked about visitors. Yes, Mike can have visitors. Please, please, please be careful and use the antibacterial hand lotion outside his room and gown up to protect Mike. The cold and flu season is upon us and that stuff is all flying around the hospital. We need to keep it out of Mike's room. Go to this post for more info. Mike is bored right now and would appreciate the company. He said he feels badly when people visit because he figures they must be bored too. Let's help him stop feeling that way. I explained that when his dad and I come we love having the opportunity to spend time with him. We don't need to be entertained. We don't feel bored at all. I am always disappointed when I don't get to go.

To keep our CF freinds in the loop Mike's routine right now includes:
Up at around 5-6 for vitals. (He goes back to bed)

IV Tobra and Zosyn one is every 6 hours (4 x daily) and the other is 2 x daily.
Do the math on that one. Each IV runs about an hour with another 15-20 min flush. He is hooked up a good percentage of the day.
He does chest PT or IPV/Vest 4 times per day. Those each take about 15 - 30 minutes.
Aerosol treatments before like Pulmozyme, albuterol, HTS, saline, etc.
Insulin checks and other CF meds like enzymes etc. Throughout the day.
And then by 9-10 p.m. it is time to get him hooked up to the feeding tube that runs 8-10 hours and oxygen that runs all night.
This is a weekend-type day. During the week tests and procedures can interrupt and add to the schedule.

The best time of day for Mike is generally afternoons. He gets unhooked between 1 and 2 and usually has another Med around 4ish and then is unhooked until 7-8 p.m.

That's about all for now on Mike. Facebook him or drop him a card or a call if you get a chance. He so appreciates the support and pray for his continued patience through all this. It is hard to be so tied down. It is hard to be sick. It is hard. Peace. Peace. Peace. Love you.

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Richard had his first soccer tournament yesterday and yep, I'm a soccer mom! What next an SUV? Just kidding. It was fun. The team took 1st place in their Division!! Go Panthers! Richard scored a goal in the first game that I missed. I was able to catch the last two games. As I walked up and saw all these moms in blankets, hats, and mittens I knew I was out of the car pool loop. Man, the things you gotta learn on the streets. Thankfully, by the time I got there people were shedding their mittens and hats. I will know next time. The kids played awesome. Better yet, I

was so impressed with their sportsmanship. (In the picture above Alissa snuck one past the goally and into the net!) Not one bad incident. The parents behaved very well too. ;) Lots of energy on the sidelines. I sat next to Regina so I would know what was going on. Thanks for the constant screaming, I mean updates :)!

This is the first year Richard has played soccer. He seems to really be enjoying it. He scored two goals at the game Wednesday night. I was so happy I had the day off and got to see him. The kids are all really working hard as a team. (Love the pic below - the boy can jump!) Parents click on any picture if you want to see it larger.

Proud soccer mom :)

P.S. We were so thankful to hear at church this morning that Ginger received her new lung. Blessings to you and your family for a continued speedy and full recovery. Peace.

Please consider being an organ donor. Blessings to you!

Good news Bad news

Mike is in a small room. Not a very nice one this time. Wish he could get a decent room - the days are so long.

He had his PFTs today. FEV1 is at 28%. Good news is they haven't gone down any further than the last time. The bad news is his FEV1 is at 28%. Urgh. Hopefully, this course of IV antibiotics will help him get back up to 50% or highter. We always hope and pray for higher. His oxygen sats were at 91% when he got there so they gave him oxygen. He continues to need oxygen at night as well as the feeding tube. His weight wasn't too bad so hopefully, he can maintain and go up from here. That may help. He is tired and resting a lot. He is, as always, in isolation. You can connect with him on facebook or his cell phone. You can write to him here:

Mike Van Deurzen
C/O University Hospital and Clinics D6/518
600 Highland Avenue
Madison, WI 53792

He's not sure how long he will stay this time. He is going to take it one week at a time. He will decide if he will stay or come home on IVs after the first week.

CF SUCKS! So glad God is bigger than CF and still in control.

P.S. Other good news - his port was accessed successfully. No "drano" needed. That was a blessing.

One Day at a Time

It has been a while since I updated my blog. Goodness so much is going on. I started my new job; we decided to sell our house, Gary got married; Mike went back in the hospital; Jean came to visit from Dallas; Mike came home on IVs for a week; we decided NOT to sell our house; David had eye surgery; and school started. It all took me so very close to the edge but God is so good. He is faithful and provided the strength and people exactly where and when we needed them. I am again, grateful and humbled by the goodness God shows us through people he puts in our path.

First, as I promised, I will keep Mike at the top of my blog to update everyone. Mike went into the hospital this past time (July right after his birthday) with an FEV1 of 28%. Heartbreaking. He was disappointed that his function got so low. He was trying to get in before they got so low, hoping that he would be able to stay more on top of things in hopes of coming up higher at the end of his course of IV antibiotics. Unfortunately, his cough started getting so bad he couldn't keep much food down. He dropped a lot of the weight he had been working so hard at gaining. He said he could not handle another two weeks in the hospital in isolation. He did one week inpatient and came home and did another week at home. He is a fighter. I was overwhelmed by my new job and didn't help him at all. I know Missy is a big help and I so appreciate others that pitch in. Thank you all. Thankfully, when Mike returned to have his port flushed and do PFTs his FEV1 had come up to 50%. While living daily on only 50% of the lung function we are all used to, Mike is always so thankful to be out of transplant range. There is a big difference between that 28 and the 50%. That is for another blog post. We continue to appreciate all your prayers of support and words of encouragement. Mike is dancing again. He has been doing protein shakes and using his feed tube and has gained back some weight. He looks good. He has a couple of great opportunities with dancing coming up and I'm hoping to find some balance so I can see him dance. God willing. And if you ever get the chance to see Mike and Missy dance, take it. It is awesome. They dance as one and it takes my breath away. I am going to try and video tape it soon. Frank and Julie you have done an awesome job! Missy and Mike - keep up the hard work!

My new job is great and hard and overwhelming and fun and . . . The learning curve is difficult. Partially because I am a bit of a perfectionist and I want to know it all now and be as productive as possible. The other part is because it is a new position so there isn't someone there to "train" me. I am trying to find out where I can best help and support my boss. I'm learning as much as possible and applying my experience. I have to say I have a wonderful boss who is very supportive and complimentary. We seem to really connect and work well as a team. I am also blessed to work with some incredibly talented people. It truly amazes me. Most companies I've worked for have at least a couple people who can kind of be annoying because they don't care, or they just lack skills or drive. I still haven't met anyone like that where I work. I am in awe of the talent I get to work with on a daily basis. I'm learning a ton from all these people. What a blessing for me.


In July this beautiful couple got married. Congratulations to Gary and Chelsea. It was just a beautiful day, a beautiful ceremony and a memorable day of family and fun. Gary and Mike were in the same class in grade school. During the video when I saw pictures of Mike and Gary together as kids I got choked up. I looked over at my sister and could see by the look on her face the emotion that only another mother could sense. So happy for your child and his accomplishments - all tangled up with the emotion of closing a chapter in your life while another one opens. Gary will always be special as I got to see him grow up more closely than I have gotten to with other nieces and nephews. I remember the computer lab I monitored while Gary and his friends practiced typing. Seems like yesterday. May God bless your life together Gary and Chelsea!



The end of July a friend of mine came to visit from Dallas. We haven't seen each other in years. It was difficult to try and plan time together given all the things that can come up that can't be controlled in my life right now. But Jean and I decided to just go for it. We set a date and she got airline tickets. It was funny because sure enough, as soon as the flights were booked I was offered my job. Mike was in the hospital when she came but we planned for this too and Jean flew into Madison. I picked her up at the airport and we headed right to the hospital to see Mike. I had been at work all morning and then at the airport. Jean had just been stuck on an airplane for a few hours so we needed to gown up to be sure Mike was safe from germs. I didn't want to take any chances. But we still had fun and grabbed a quick picture. Of course there wasn't a nurse around but we got a goofy picture. Thanks, Jean and Mike for putting up with my photo fetish. Jean and I left the hospital and walked up and down State Street. Jean bought me dinner and then we ran to the grocery store and she bought some excellent wine and beer and we came home. We just hung out and had such a wonderful time. It has taught me that I need to take time to refuel. I am so thankful to have friends like Jean who help me slow down and smell the roses (or the incredible red wine ;)). On Saturday I allowed myself to be pampered. (Thank you to Angie and her family for the gift certificates - they were finally put to good use!) We had massages and I got a pedicure and Jean got a manicure. We laughed and caught up and reminisced. It was awesome. On Sunday she helped me figure out my benefits for my new job. That was so kind of her to help because I was overwhelmed with it all at the time. The advice she gave to Paul and I is so appreciated. Thank you so much for all you did Jean. Love, love, love you girl! I can't wait until you come again!

The beginning of August was hectic with Mom working full time. David needed his fourth eye surgery and I was torn. Again, God provided. My friend Gail came over and spent the night and she and Paul left with David at 5 O'clock in the morning and headed to the hospital in Sheboygan. I went into work. This was such a difficult decision. David came out of surgery kicking and screaming like he did the last three times. Gail's help was immense. She and Paul worked together to keep David from rubbing his eyes and settled him down. After being drugged and taking a long nap they were able to bring him home around lunch time. Gail is a saint for giving her love to my child in this way. God has blessed me with such awesome friends. David was bright eyed and untraumatized by the experience by the time I got home from work. While I wish I could say his eyes are perfect now they are still better than they were. We are praying he won't need any additional surgeries and that too is a blessing. Thank you for all the help Gail! Love, love, love you!

August means the beginning of school for us. This also meant another transition. Paul went back to work and the boys are all off in school now. Here are some pics of the yearly tradition in our house.

Richie is a big "upper grader" now. He started 5th grade with Mrs. Albrecht.

Gage is 7 now and in 1st Grade with Mrs. Lauber. I also got a picture of Gage, with his Mom (my daughter Katie) on the first day.



And yes, my baby started Kindergarten. His teacher is Mrs. Wilsman. God bless her!

For those of you new to my blog, Katie is my oldest and her son Gage goes to the same school as his uncles. It keeps life interesting. Gage and David get to see each other at recess and Richard gets to help by getting milk for the Kindergarten class when it is his turn. Below I snapped a picture of Richie, hubby Paul (right) and Mr. Woldt the principal. Jon and Paul were classmates in college. He also taught Katie and Mike years ago. It is a small world.



The blessings we have been given are immeasurable. God has seen us through so much and continues to provide for us on a daily basis. We are thankful. These past few months have been particularly hard for me as I have started my new job and so much has gone on. So many people have been there for me. A couple of friends of mine, Leslie and Pam, brought over dinner one night. I was almost to the breaking point as Mike was getting ready to be admitted to the hospital and things were so hectic at work. What a blessing to come home and find a kitchen full of food and goodies. Thank you ladies! You are the best!

The demands on my time are greater than they have ever been. I have a lot of work to do. But I am having fun. I have the most awesome friends and some of you I have neglected lately. I thank you for your understanding during this trying time. I hope to be able to connect soon. Peace and love to all of you! Your support means so much.

-

To an old acquaintance, Joyce, please know I am praying for you as you again battle cancer. God give you peace, strength, and healing.

-

And in closing, if you have a moment please watch the following clip. And please consider being an organ donor. THANK YOU!

http://www.mlive.com/news/grand-rapids/index.ssf/2010/08/sparta_mom_awaiting_lung_trans.html

Blessings to you!

Am I going to die from CF?

I was folding clothes and putting them away in Mike’s dresser drawers. It was just an ordinary day. Mike was in no particular distress. He was 7 years old. I will never forget this day. Mike was sitting on his bed fidgeting with something in his hands and he said, “Mom, am I going to die from CF?” I felt the familiar stab of pain in my chest, my head scrambled to find the words… I had thought about this before….even anticipated it to some degree….but not now, not yet, my son wasn’t really thinking that this fatal disease could actually kill him was he?? Or was he? Not missing a beat I continued to place clothes in his drawer and appear to be unscathed by his question. “Well, I don’t know Mike,” I began to reply, “none of us really knows how or when we’re going to die. There are lots of ways people die. Some people die from cancer, some people die in car accidents and some people die from CF. What do you think, Mike?” By now I had stopped what I was doing and was sitting next to him on the bed. “Well," Mike began apprehensively, "I don’ know but sometimes I just think that I’m gonna, choke and choke and choke like this (made these horrible gasping sounds) until I just can’t breathe anymore and then I die.” I put my arm around him and hugged him not sure of what I was going to say next and he continued, “I just don’t want to die. . . because I’m afraid I’ll miss you. I don’t want to be by myself, without you.” “Oh, Mike,” I said confidently, “You won’t be by yourself, you will be with Jesus. He will be with you every second and forever.” Getting more stressed Mike said, “But mom, I will miss YOU!” And somehow in that split second God gave me words that I had never thought of before, “Oh, honey, I’ll be with you. I’ll be right there. You see, there is no time in heaven. So I will be right there with you because I believe in Jesus, so I’m going to heaven too!” A sense of peace began to replace the stress on his face. “The Bible tells us that 1000 years are like a second in heaven because there is no time. And mom isn’t going to live to be 1000 so I will be there in less than a second.” Then he gave me a big smile. I don’t remember anymore of the conversation after that point. I only remember the peace that Mike had from that point on. He was stressed about leaving mom and others he loved behind and this very Biblically correct answer - that I can only thank God for - gave him the peace he needed. Someone he loved and that loved him very much, Jesus, would take him to heaven and everyone he loved would be there with him. Divine intervention.

I have been saddened these past few days at the news that Conner Jones, after 7 years of battling CF, passed away on my birthday, just two days ago. It seems that kids should not have to think about death. Their little hearts and minds should not be burdened with sickness and disease. The pain of children dying would be unbearable if we did not have faith. It is because we know that heaven awaits us that we look forward to eternity with loved ones. Conner’s mom, Sarah, taught him about Jesus. What a wonderful mother and father Conner has. My prayers go out to this family. Breathe easy little Conner, laugh and play at Jesus’ feet. Peace, peace, peace to Conner’s family.

To all of you in the trenches fund raising and helping to find a cure for this disease, we thank you. We are blessed by you. We will continue to fight so someday no one else will lose a child to CF . . . so no one will have to have this conversation with their child about dying with CF . . . We need a cure. Thank you for your support… no other words.

The Update - Life for us with CF

Like most diseases Cystic Fibrosis does not manifest itself the same in any two cases. Not only does CF have many varied gene mutations but even those with the same two gene mutations will show with seemingly different severities. There is no way to predict CF progression. But progress it will as there still is no cure or control. For some of our friends and family CF is still a mystery. Without over simplifying, our bodies produce thin slippery mucus that coats and protects our organs. In CF the body produces thick sticky mucus that clogs the lungs and digestive tracts and creates a breeding ground for nasty germs. This disease literally slowly starves and suffocates its victims. It is because of the germs that grow in Mike's lungs that he needs repeated "tune-ups" (IV antibiotics). Mike is never without infection in his lungs. The IVs just minimize the level of germs and then they progressively get worse until the next "tune-up" yep, kind of like an oil change - thus the term. As time and progression continues the need for IV antibiotics gets more frequent. While we are all still hoping, praying and raising money for a cure, the damage done inside the lungs from repeated infections is irreversible.

Mike has been hospitalized more times than we could possibly count spending years of his life in the hospital. When you use antibiotics that much the germs that you are trying to kill can mutate and become resistant to the antibiotics. There is research that also shows that sometimes without repeated IV use the germs can still mutate and become resistant - like I said each case is different. We don't know how Mike's have gotten to where they are (really not important at this point) but they are very resistant. Mike grows some germs that are resistant to all drugs currently available. They do seem to respond to a mix of a couple antibiotics right now, thankfully. As damage to the lungs increase pieces of his lungs no longer function.

This brings us to where we are today. Mike is currently living on about half of his lung capacity if I understand everything correctly. And the half that still works gets infections and goes down sometimes as low as only 26% before coming back to his now baseline of around 45-50%. Obviously, when so little of his lungs are working his heart has to work extra hard to get oxygen to his body. His organs are strained from the lung infection and harsh antibiotics. The doctors are always searching for the balance that causes him the least distress. Oxygen at night helps him get better sleep and night feedings through a g-tube helps replace the calories that are lost fighting infection and trying to breathe with reduced lung capacity. Right now Mike seems to need antibiotics about every 6-8 weeks. When he gets out of the hospital he has a couple of pretty good weeks before the infection starts to gain momentum. An oral antibiotic will usually stop the progression for a few weeks and when that is finished it is just a few more weeks until his lung function drops to a point where he needs IVs once again. The cycle repeats.

The most important things to know:
Mike isn't doing anything wrong.
This is CF progression in Mike - not all CF patients.
The doctors are on top of things and trying what works.
This could go on for a very long time.

So why do we feel that now was a good time to share this information? A few reasons but mostly because we know how much you all love Mike. This large extended family is hard to keep up with and we know you all have lots of questions and are concerned. We just thought it would be easier to put it all out in one spot so everyone will have the same info.

While we are hopeful that Mike will have many more years with the lungs he currently has, there is no way to predict an outcome. We have talked about transplant. This could be many years away or it could be just a few months or a few years away. It just depends on the damage these infections do to his lungs. Again, simplified, the general rule right now is that when the infections get to the point where the damage to the lungs cause his lungs to no longer get above 30% he would be listed for a transplant - meaning that his life expectancy with this set of lungs would be around two years from that point. CF patients with lung transplants are living for years and the life expectancy is improving all the time. All good, promising stuff.

Mike is living his life. Not recklessly but realistically. There will be times when he chooses to do things that may seem to others to be detrimental to his health. Only Mike will be able to decide when it is time to be hospitalized and take a break and when it is time to push things.

It is hard to plan. It helps when our family and friends are understanding. It helps when everyone understands that Mike needs to take all the meds and do all the treatments. It helps when people understand that sometimes for us, things just happen at the last minute. We don't expect that others can always accommodate us, we just want you to understand we are trying. Mike wants everyone to understand that he cannot predict when he will need to be hospitalized. As CF progresses in him it is harder and harder for him to "plan" future functions. While he can sometimes wait a few days or a week to be admitted, there are other times when the infection gets bad and things seem to go downhill quickly. He tries hard not to let people down but he can't always do that. He has spent every holiday in the hospital at some point. Yes, even Christmas and his birthday. Didn't plan for that.

As Mike's infections get more frequent his immune system is getting weaker. He is at greater risk for infections of all kinds. A simple cold or sinus infection to you can mean another course of IV antibiotics (usually 14 days) for him and the risk of further damage. This doesn't mean Mike will exist in a bubble but it will help us if you let him/us know if you are sick. Hand sanitizer and masks etc., can do a lot. We respectfully ask that if you have been invited to our home or have invited us to your home and someone turns up sick that you would just let us know so we can take the appropriate precautions and make decisions from there. Depending on where Mike is in his cycle he may or may not need to change his plans.

One of the harder things for me as his mom is when people ask me how Mike is doing. I don't always know what to say. I may say, "Things are hard." Sometimes to that response I will hear people bewildered say, "Well, I just saw Mike out last week??" Without explaining all that has just been typed above how do I respond? Do I just tell people he is fine? Not only would I feel like I was lying I would also feel like I was denying his pain and struggle. So i don't say too much. But yes, Mike is out and about when he feels well. A week or even a few days later the infection can flare and he finds it hard to climb the stairs to his room. He may not be coughing much (or is able to suppress it) today and a few days from now he may not be able to control it and he coughs until he almost collapses. This is CF. This is our reality. It is more difficult at times than at others. And if you have read this far we thank you for trying to understand. We thank you for your love and support!

Mike is living with CF. Things will get harder as CF progresses. Mike is living each day to the fullest with what he has been given that day. He is strong and brave, frustrated and human. Mike understands that his times are in God's hand and he is confident in God's plan for him. Could Mike pop back up and have a miraculous recovery - with God all things are possible but given the level of damage and resistance, it isn't too likely that that is part of God's plan. We are so thankful for these weeks when Mike is able to dance and workout and be out and about with all of you . . . We have faith in Romans 8:28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose.

God is in control and he is helping us do the best we can! I will continue to update the blog with the ups and downs (not quite this lengthy ;)). From the bottom of my heart thank you for your support and understanding, for your encouragement and love!
Blessings!
P.S. If you have any questions don't be afraid to ask :)

I got to see him dance tonight!

This dance thing . . . actually started with my mom and dad. They were great dancers. People actually paid them to dance in their taverns - get people going and all. They were really good. I say were because they don't dance much anymore.

My dad taught us to dance when we were little. Does anyone remember when the bar up the street would have street dances? Barricade off the block and fire up a band. It was so much fun. Weddings always had a band back in the day too. I can remember doing the polka with Uncle Jim and you would count how many times your feet actually hit the dance floor, as he swung you around, lol.

Then came disco and I wasn't much into that so I sat like a little wall flower. But then Arthur Murray came on the scene and started teaching ballroom dancing again. Swing, fox trots, hustles, it was fab. Won my first dance contest on my 18th birthday. A few years later after dancing for 60 hours in a dance marathon, I got kind of burned out. Hung up the shoes so to speak but I had many lessons under my belt.

I would teach Katie and Mike how to dance at weddings when they were little. They didn't show much interest. But then Mike got into high school and proms came. I taught he and his friend some swing steps and the rest is history. Mike loves to dance. I love to watch him. He has enjoyed learning to dance and going to competitions. Julie has taught him so much. Now he dances at Frank's studio also. He gives lessons. Check it out some time!

Here is a pic of him dancing tonight with Julie. Outside, down at Buttermilk park. I was far away and it was getting dark but my heart took a picture. He is living my dream - dancing. I loved to dance. I think I will have to pick this up again.

It is hard to believe when you look at this picture that he is dancing with 50% lung capacity.

Hard to believe he needs oxygen at night.

Hard to believe he has to work so hard to be able to do this.

Hard to believe that a few weeks from now he won't be able to do this. . . and then by God's grace he will dance again.

Hard to believe.

I'm still working on the post to let you all know where Mike is at and how he is doing. It is coming, it is just hard.

When I blog about Mike to keep you all posted as to how he is doing, I will put his news at the top of my posts so that those of you who love him don't have to dig through all the other stuff to get an update. How does that sound? Good. I thought that might be better.

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In other news. . .

This VERY special young man turned "7" last week. Happy birthday to my grandson GAGE! His mom got him a new bike!

We celebrated with donuts and candles early in the morning!

He is so precious.

And in funny sayings last week - this one tops the list:

Driving in the car to the store . . .

Richard: Mom, do churches have humor?

Mom: Well, ahhmmmm, . . . I don't know . . . I mean I think so, well I don't think there is anything wrong with humor I guess, why?

Richard, very straight faced with no emotion in his voice . . .

"Well, that sign back there on the Methodist church said,

Text while driving if you want to meet Jesus.

I guess that was a joke, huh?!?"

May is CF Awareness Month

If you are reading my blog you are probably a relative or close friend and you are very familiar with Cystic Fibrosis. You have read all about this disease and understand how devastating it can be. In May we take a moment and refocus our efforts once again on getting the word out about CF. Why? Because CF awareness saves lives. It's that simple. There are two fundamental ways this happens.

1. Early Detection - By telling others about the symptoms of CF like chronic lung infections, poor weight gain etc., someone may pick up on a diagnosis earlier than if they had had no idea. This has already happened in our family. Early detection is key to living healthier and longer in CF. When others learn about CF lives can be saved.

2. Helping to find a cure - When people know and understand that CF is a - still always fatal disease - they want to help us find a cure. Most states already have tests for infants to tell if a child has CF. This early detection along with life saving drugs and better enzymes to help with digestion have increased the life expectancy to 37 years. But every day CF patients are still dying waiting for a cure. Spreading CF awareness to aid in helping fund research saves lives.

So won't you please help us spread the word about CF? Decide right now to talk to someone new about CF. You can even tell them about your nephew, cousin, friend Mike and how this affects him and so many others. Then tell more people.

Research has come so far. I can still remember when it didn't seem like we would ever find the gene for CF. Now we not only have that but there are many new treatments to help fight the infections as well as promising new breakthroughs that will actually get to the root of the problem with the CF gene. If you have been blessed and are able please consider making a donation to the Cystic Fibrosis Foundation. Rest assured that your money will be well spent as only 10% of each dollar goes to administration costs. Yes, that is correct 90% goes directly into research for finding a cure. I have a button just to the left that will take you to the CFF website. On the right side there is an orange button where you can securely make a donation. Or simply click here.

There is one other way you can help. Please consider being an organ donor. I also have a button to the left that will take you to a website to give you more information. Many CF patients are waiting for a second chance at life through double lung transplants. Talk to your families and let them know your wish and then sign your driver's license letting them know of your selfless, life saving decision.

Thank you for your support. Whether financially, volunteering, becoming an organ donor or telling others about CF - it all helps and we thank you!

I know I'm a little late to the May CF Awareness party but any month is a great month to think about CF awareness. THANK YOU!

I don't know what the future holds but I know who holds the future . . .
Blessings!

Dear Mike,
I miss you.
I miss seeing your cute smirk when David says something funny.
I miss seeing you in your Suzuki jacket getting ready for a ride.
I miss your dirty dishes in the sink.
I miss you coming in the door or walking down the stairs 5 minutes after David goes down for a nap.
I want to see you dance.
Thanks for being so brave.
Thanks for always being kind and respectful to me, doctors and others.
Thanks for putting up with me as I'm trying to figure this all out.
Thanks for continuing to fight.
Thanks for living life to its fullest.
Thanks for trusting God.
I respect your decisions.
I love you - get better soon.
Love,
Mom
P.S. CF sucks!
I wish you had a room so I could send this to you in a card.

No room in the Inn

So Mike is all checked in - in a holding pattern ;). They don't have a room on his floor just yet but his port was accessed successfully and he already had his first round of antibiotics before I left. Cipro and Meropenem (sp?).

He lost 5 pounds but that should come back as the infection in his lungs clears up some. His resting heart rate was in the 80s and his oxygen sats were at 94 on room air and no temp. All good stuff. His Fev1 was 32%.

Thankful for another day of peace. Time for bed :)

P.S. Richie had his first baseball game last night - they won!

My guy is 50!!!

David's hands were backwards for the camera but we had a pic to document the big day. And how did this wonderful man and father want to celebrate this momentous occasion? A favorite dinner? A baseball game? Time alone? No - he wanted his boys to have fun. He is such a gem.

We went to the Mine Shaft and had a huge pizza - Paul, Richie, Ben (nephew), David, Gage and yours truly. The boys had a blast. The "birthday" special included 25 tokens for each of them. Then we went to Cabellas to look around. David and I had never been there so it was fun. Each boy got 4 tokens upon arrival which they immediately deposited into the rifle range. David actually hit a few targets ;).

I love this man. He is so patient, loving and dedicated to this family. He always thinks of all of us before himself. Such a treasure. I love that he takes his role as spiritual leader in our home seriously. We are so blessed.

And how did his birthday begin? Waking up to the phone at 2:30 a.m. It was Mike - he was in severe pain. After spending a few hours in the ER in Fondy on Monday, Mike was still in pain and it was getting worse. Did Paul say, "No, wait it is my birthday?" or "Oh, no not again?" Absolutely not. He completely understood when I got in the car and headed directly to Madison.

After more testing it was determined that Mike had pleurisy. Some major pain medicine helped him hold up. CF and pleurisy - not a good combination. Thankfully the pain meds helped him endure the vest in hopes that his lungs will not get worse. Thank God that there are pain medicines now that are safe for CF patients to use.

All in all a memorable day! We ended the night with a little trip to Culver's for some birthday ice cream - Paul with his birthday coupon ready, of course!

Happy 50th Paul!! April 6, 1960

NOT LISTED!!!

but no red flags!!! Praise God. Mike was not put on the transplant list because it is "too soon." Mike's pfts have come up which is a huge blessing! Fev1 at 49%. The testing won't have to be repeated for 2 years so that is another blessing and everything was within their limits (except he needs to gain weight but the tube will help with that - he has already gained 6 pounds).

Mike was disappointed.
He was angry for a bit.
Then he came around.
There is always an up side.
It is hard.

I will never pretend to comprehend what it is like to live with this disease. A progressive, fatal disease. He is so strong.

I admire his courage.
I admire how he picks himself up and keeps going.
I admire how he makes the best of things.

When I left he was talking about the dances he is putting together for his cousin's wedding this summer. He is doing the choreography. He is busy planning for tomorrow. And he is tired. They bumped up his oxygen to 1.5 liters while he is sleeping. We hope that will help.

I am thankful for God's perfect plan and especially thankful when he lets us know what it is in a very precise way.

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

Blessings,
Gina

P.S. Thanks Terri for watching David so I could be with Mike today.
P.S.S. Gage lost a tooth a few days ago :) - very big stuff!!
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So thankful!

Mike blew 45% today! Praise God, Praise God, Praise God. I'll be back tomorrow with news from the transplant team. So confident in God's perfect plan!!

This is Mike with his IPV machine. I'm not even sure what it is (I'll be researching soon). His chest and stomach are just too tender from the surgery to be able to handle the vest or chest PT (pounding). This pushes pressure into his lungs to open up airways. What a huge blessing. If he had to skip treatments right now his health would take an even bigger hit. Research has come so far. His improvement in PFTs shows this is working (so is divine intervention!)

Thanks for all your support.

Blessings,

Gina

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Please consider giving . . .

the gift of life - sign up to be an organ donor!



Each day 19 people die waiting for a transplant. Sobering statistic if you are on a list waiting. If you haven't ever considered donating please consider it - thank you!



"But Gina someone else has to die. . ." I know this may sound strange but that doesn't cause me any anxiety. Someone already had to die to give us life . . . eternal life. Because we have a Savior who gave up his life so that we can live eternally with him, we already understand how someone could give life for someone else. Jesus did so much more for us. He lived the perfect life we couldn't live and died an innocent death in our place. We are so thankful. We have so much peace knowing that this same Jesus is totally in control of all things. It is God who numbers our days. Psalm 31:15 "My times are in your hands." There isn't a disease or a surgeon who will change God's perfect timing and plan.



But we can be a part of that timing by giving an organ to live on after God decides our time has come. I am an organ donor. I have been for years. I hope you will consider it too.



Mike is still in the hospital. He rested yesterday - no appointments or tests. We couldn't go visit him because Paul had a virus (3 days - yuck). Get lots of rest Mike! HUGS!!

Cystic Fibrosis is progressive and is still always fatal. We also know that God is in control and Mike's health could improve for a time. We take it to the Lord in prayer and await His answer and His will. We know his plan is always the best plan as we pray, Thy will be done. God willing, Mike will feel much better after this course of IV antibiotics.



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With infection and sickness adding risks to Mike's condition, I am contemplating whether or not to continue to be a Sunday School teacher. These kids are the best. They bless me!

There is nothing better than teaching children about Jesus!

I have lots of helpers! This may enable me to continue :)! They are such a blessing!

We have so much fun - who could resist these sweet faces!! Precious!!

My little David - he loves mom being his teacher!

I'll continue to pray about this! God willing I will be able to at least finish out this year! Thanks for stopping by - always great to hear from you. Thanks for saying hi Dana (one of Mike's godmothers) - long time no see!

Off to a birthday party with the boys!

Blessings,

Gina
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the good, the bad and the ugly

As Mike's pfts continued to decline because of his Cystic Fibrosis, his doctor advised a transplant evaluation. At his last clinic appt she said she would like to see him get his initial consult - what she termed the good, the bad and the ugly - within 2-4 weeks. We walked to the reception desk to make the appt but to our surprise the nurse that was to do the consult was free right then, we walked back to our room.

So much information - I took notes

In order to be considered for a double lung transplant, patients have to go through a 4 day evaluation. This is normally done out patient. Patients are required to get a hotel as the tests will take all day. An inpatient stay could be considered. Tests are as follows:

Heart cath (measures pressures etc.)
X-ray (measurements)
CT of chest
X-ray sinuses
X-ray teeth
PFT's and ABG (levels and blood gases)
bone density (a concern with CF)
echo cardiogram
EKG
Lung profussion
labs (blood typing)
HIV
Sputum
Social worker
Shrink
Financial
Nutritionist
Dentist
Infectious disease
PH Probe

6 minute walk

I think that is most of them.

RISKS:
Some people come in for the transplant and never leave.
At 5 years post transplant 50% of patients have passed away.
19 people die each day waiting for a transplant
The average wait for a transplant is 23 months
No raw meats or eggs after
No salad bars or buffets etc.
Precaution around kids etc., prone to infections and viruses

You need to be strong coming in for the transplant. Rehab is important. Even though lungs will continue to deteriorate rehab is a must.

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Mike went home on two oral antibiotics and the thought was that if he decided to move forward he would do the tests during his next hospital stay. He continued on the oral medication for almost two weeks but didn't get much better so he was admitted to the hospital on March 10th.

What seemed to be a much needed routine "tune-up" with the start of the evaluation turned more serious right away. Mike's port was not able to be accessed. That was a blow. We were very fortunate to have had that port for 3 1/2 years. What a blessing.

The nutritionist was the first to visit and said Mike's BMI was at 17% and needs to be at 18.5% to be "listed." Mike weighed 123 lbs (he is 6 feet tall). We talked about a feeding tube. Having the tube would allow for night feedings to boost caloric intake. Mike's body is having to work very hard to fight the lung infections now and the sickness takes his once ferocious appetite away. He agreed to the tube.

On Friday he was sedated for the Heart Cath in the morning and then he waited to see if they had room for him in the OR. Thankfully he was taken down at 6 p.m. There were a few complications. It appears he has some stenosis of the veins and arteries. Once again they were unable to place the port on his right side. Thankfully they were able to place it above the other site on the left and it was working well. While trying to place it on the right the surgeon pulled back on the line and lost some of the teflon coating inside Mike. He told me Mike was stable and they would be writing a report and taking x-rays to see if it went to his lungs. All seems fine so far.

Because Mike is kind of tall and has a long rib cage the feeding tube placement wasn't quite where Mike and the surgeon wanted. It seems to be working fine so far and Mike is dealing with the disappointment.

As of today Mike is 90% through the evaluation and half way through this hospital stay :). He continues to heal.

We are so thankful for God's continued blessings. He is in control and we put our trust in Him. More info on test results to follow.
Blessings,
Gina

Mike playing with his new PSP given to him as a gift from Frank! Thank you Frank!! HUGS!

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Breathing with CF . . .

That is the name of the blog Mike would have if he were to do one. I think that would be nice. But he isn't up for it right now. But I will continue to blog about Cystic Fibrosis. I so appreciate all the information I receive by reading the blogs of others and while no two CF patients will be the same, it just seems to help to compare notes.

Here is an update:

Date - Fev1
4/1/04 - 5.6 - 99%
6/22/05 - 3.16 - 68%
12/18/06 - 2.44 - 53%
5/16/07 - 3.38 - 74%
9/28/07 - 1.62 - 36%
12/26/07 - 3.56 - 77%
5/7/08 - 3.77 - 82%
5/29/08 - 1.78 -39%
11/5/08 -2.37 -53%
5/4/09 -3.13 -70%
11/04/09 -2.36 - 52%
12/2/09 - 1.91 - 42%
1/19/10 -1.72 - 38%
1/25/10 -1.78 -39%

And at our center under 40% gets you started in transplant land. Mike is undergoing his transplant evaluation. He's a trooper. 90% of the testing is done. More to follow.

There are no words . . .

except. . .

God's grace is sufficient for me.

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