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 am humbled and honored! And Little Chute

Praise God, Praise God, Praise God. I have so much to be thankful for. God's mercies are new every morning. I received and accepted a job today. At an awesome company - J.F. Ahern. Just a wonderful opportunity and a blessing for our family. They have excellent benefits and have been a top choice for places to work in this area for the last several years. I am just in awe of how God has blessed us. While so many companies have cut back they are growing. They are fire and mechanical contractors at the top of their industry. I am almost speechless.

Among other blessings received - Piper got her lungs. I wrote about her in a previous post and God has blessed her with a new chance at life with the gift of donor lungs. This young woman near death was spared because of someone's selfless act to become an organ donor. My prayers are with the anonymous donor and family. Through their tragedy they found it in their hearts to bless Piper. God bless them. Again, I am almost speechless. And Piper is not taking this gift lightly. She is working extremely hard to use this gift to its fullest. She should be out of the hospital soon. Check out the link to her website (click on her name above) to read more about it. She is already posting on her blog.

And yet another blessing, neighbors. But not just any neighbors, neighbors from Little Chute. Facebook is such an incredible blessing when you can connect with people who at one point in your life were such a blessing but then with time and space you drift apart. When I think of the parable of the good Samaritan I am reminded of my neighbors in Little Chute. This small community embodies the true Biblical sense of neighbors. I can remember it like it happened yesterday the days leading up to Mike's diagnosis with Cystic Fibrosis. Katie was less than 13 months old when Mike was born and I had my hands full. Countless hours were spent walking the floors with this screaming baby who was literally starving to death in my arms. When he was finally admitted to the hospital, his father Mike, Sr. and I were exhausted. We needed people to watch Katie so we could be with Mike. Everyone pitched in. Family, friends - we were covered. And then a few days later we heard the words Cystic Fibrosis. I quickly looked it up - we were devastated. Mike was slipping away. Doctors told us we needed to get him to the hospital in Madison (2.5 hours away) first thing in the morning. "Be packed and ready to stay for at least two weeks!" I remember my mom staying in the hospital with Mike so I could go home and pack. I got home and looked at the HUGE pile of clothes on the basement floor next to my washing machine. Pack for 2 weeks? I would need to get Katie ready too. I was so far behind. All those sleepless nights - I was exhausted and I only had a few hours. I was emotionally drained wondering if my son really had this fatal disease.

The doorbell rang. It was my neighbors asking what they could do to help. They had heard Mike was critically ill. My neighbors, Megan, Kay, Julie and others I can't remember, picked up my dirty laundry and took it home and brought it back in less than a couple of hours - folded and ready to be packed. That is love - cleaning someone else's dirty laundry! Yes, that still brings tears to my eyes. They did that for me and my family. I have just recently found Kay on facebook. Big hugs and blessings to you. Below are Katie and Mike with their first friends from next door. God is so good. He gives us just what we need, when we need it and I am in awe tonight of his continued blessings in my life. So excuse me for gushing and thanks for listening/reading.

And to our old friends and new friends welcome - it is good to see you!

Blessings!

Stacey, Katie and Mike -Katie, Stacey, Adam and Mike

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?!?"

Successful - Uneventful Surgery

Praise God! So thankful to go through a surgery with no complications and actually better results than we had anticipated.

No these aren't the surgeons - just the three little guys visiting Mike the other day. Thought this picture was too cute to pass up!

Dr. O was able to fix Mike's port. They also switched his feeding tube to a smaller Mic-Key. It isn't as flush as Mike would like but he is not complaining. He is sore but we are both so thankful they didn't have to place a tube down his throat. They were able to do the procedure with just a mask and it was pretty quick. All good news.

Mike is planning to come home on Wednesday. Thanks for the prayers and support. Blessings!

The 5th Anniversary . . .

Of the day Dr. Massick saved this little boys life.

That is how Paul usually refers to David's birthday. And rightly so. Actually, it still sometimes amazes me that he is here. Divine intervention for sure. We are thankful.

After 5 miscarriages I said enough. We tried so hard to give Richard a sibling close in age. In fact Katie and I were pregnant and due just a few weeks apart. Everyone thought this was the next generation of Duane and Shellie. But then I miscarried and said enough. I felt that God had blessed me with a grandson and I was happy with that. Richard would have a nephew close in age instead of a brother. Truly a blessing but God had another plan.

I was more than just a little surprised to find myself pregnant at 44. It was a little scary going through the pregnancy. But all seemed fine going into the delivery. There I was with my friend Kamala as my doula and Paul there for support, certain that even though I was 20 days away from turning 45 I could get through natural childbirth one last time. But again God had another plan. Davids chord prolapsed and there we were uncertain of the outcome as I watched his heart rate drop dramatically. Dr. Massick moved quickly and doctors and nurses ran. A nurse pushed back on David's head to relieve the pressure that was choking the blood and oxygen from his chord. Minutes seemed to drag as I waited for his cry. There was a small complication and Dr. Massick pressed on. Finally, as Paul was walking into the room (thanks to Kamala) we heard his faint cry. They took him away and I told Paul to follow him. He would know what to do if anything went wrong. David was fine. He perked right up and they watched him for a while and said there didn't seem to be any problems. Divine intervention for sure. We still praise God for his blessings.

So for David it is another birthday. A special birthday turning 5! A birthday that means he will get to go to school next year with his nephew and brother. A birthday that he was sure meant LOTS of presents! He wasn't disappointed. Unless you count the fact that a couple of the bags contained clothes that he wasn't thrilled about. But he won't even remember that next year. He will just remember that he got lots of presents. Some of which we may use again next year when it comes time to anti up "lots" of presents ;). And in years to come when I look back at the video I don't know which will be more endearing, hearing him say, "What, you gotta be kidding me!" (when opening, to his dismay, the shirt and tie) or his proclamation, "This is a great birthday!" while waiting for the next present to be handed to him. He is such a character!

Thank you grandma Kristi, grandma Nettie and grandpa Bob, Uncle Mark and Uncle Jeremy for helping to make this a special day for David. Hard to believe the planning didn't start until late on Wed night when Mike called and said surgery wouldn't be until Monday. I couldn't have done this without all your help!

Blessings!

Three more sleeps MOM!

That is how I was greeted when I picked David up from 4K yesterday! And of course today I was reminded, "Two more sleeps, mom! Two more sleeps until my birthday!" Oh to be 4 years old and turning 5 - how special.

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Mike called me after supper tonight to let me know that he was finally told that his surgery will be on Monday. So now I can plan a birthday party for Friday. So now I CAN plan a birthday party for Friday. So NOW I can plan a birthday party for Friday. I can. I can do this!

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Chronic illness -- well, is chronic. There is no controlling it or planning for it - for the most part. It is part of what makes it difficult. In the past few weeks we have received two wedding invitations, several graduation party invitations, birthday party invitations etc., etc. We have a large family. What we didn't get was an invitation that stated that Mike's two week party in Madison would start on exactly May 26th and end on June 9th (God willing). How do you respond?

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I really hope that people know me well enough to know how much I love to be with people. I love to celebrate! I love to attend and bring something with me to contribute. But things are getting difficult. Part of my learning to deal with CF getting more difficult is to admit when I need help AND to let people know where we are at so they can understand what we are going through. So this is me telling those I love - it is hard for me to plan now. I will do the best I can to attend as much as possible - because we all want to. But that may mean that sometimes we will only be able to give a few days notice. I hope and pray that if that is ever a problem that you will be honest and let me know. Weddings are especially tough. I understand how much each plate at a dinner costs. To have us suddenly not show up would be a bummer. Sometimes I have opted to skip the dinner and just go to the reception to avoid this problem. Thank you for understanding.

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The other thing that I would respectfully ask is that if we have extended an invitation to us or accepted an invitation from us and someone in your family is sick that you would call and give me a heads up. Obviously, as Mike's CF has continued to progress this is a serious concern. Having three children in our home already puts us at extra risk. We need to be very careful. Thank you for understanding.

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Well it is off to bed - I'm going to be getting up early to plan this little man

a very special 5th birthday!!

Blessings!