A long evening and night. Carli had been having a lot of stomach pain and is running more fever. It is difficult to know why as there are so many potential causes, but most likely it is the infection. This morning, she finally sleeps.

It is miserable listening to your daughter in pain and not being able to do anything for her. You pray, but you have prayed so much.

In times like this, one thought helps me through, “and this too shall pass.” It feels like forever, but it is not. We will get past this. This is just for a moment.

Then the question arises, “What does getting past this look like?”

My dad is slowly getting stronger. Another checkup last Tuesday, and his numbers are slowly improving. Seeing my dad’s improvement encourages me in our struggle with Carli. No exaggeration, great person of faith that I am, I really thought this last visit to see him would likely be the last. My dad and his doctor had the same sentiments. It is nice to be wrong.

What I thought was going to be a time of sorrow was a time of joy.

Final reflections on Job:

They actually had many good things to say, (Job’s friends that is). They were wrong in assuming that the problem was with Job, but it was an honest mistake. Job’s suffering did not make sense. The events that happened to Job did not match their concept of a loving, merciful, righteous God. And so they attempted to defend God by giving a logical explanation to the situation. Not so different from many sermons I have heard and books I have read.

The only difference today is that instead of his righteousness being questioned, Job’s friends would be questioning his faith.

But their attempt was an act of futility. Trying to answer for God usually is.

The fact is, only God, can speak for God.

This is going to sound tough, so please hear it in love. Someone in pain or who has suffered loss does not want or need quotes, even biblical one, thrown at them. They don’t need a theological discourse on God’s mysterious ways.

Now you may be thinking, “Isn’t that what preaching and reading the Bible is all about? To teach us about God and his ways?”

No. The Word certainly teaches us God’s ways and preachers try, but that is not the final purpose. The Bible, and I think good preaching, is a testimony of what God has done, (and sometime what he is going to do), not merely to teach us about him, but to lead us to him.

Job did not need to hear about God. At the time Job understood about God better than any man alive. Job did not need to hear about God. He needed to hear from God.

If you have had loss and sorrow, you probably understand exactly. Though you may be crying out “why,” a treatise on God and his ways is the last thing you need. Your needs are very basic. Unless the answer is a cure or some form of deliverance, you don’t need answers from the people around you. Just to knowing they are there and they love you is sufficient.

Otherwise what you need is to hear from God directly. Even then, the need is not so much for answers. The need is for encounter.

in my own need for Carli, I expect answers, but not from books, preachers, or even from those I love. Even at their best, all they can give are well intentioned guesses. No, I need and expect to hear from God himself. Nothing else can satisfy. And if he is the living God, (and I know he is), why should it?

I suspect, that like Job, I will not find the answers too complicated. God’s presence alone will likely be enough to make all things clear.

Kevin

Then Job answered the LORD and said: "I know that You can do everything, And that no purpose of Yours can be withheld from You. You asked, ‘Who is this who hides counsel without knowledge?’ Therefore I have uttered what I did not understand, Things too wonderful for me, which I did not know. Listen, please, and let me speak; You said, ‘I will question you, and you shall answer Me.’

I have heard of You by the hearing of the ear, But now my eye sees You.

Job 42:1-5

 
5/16/10

Carli has slept about all day. I am not surprised. She has been running a fever up to 104 and has an infection in her PIC line. I knew there was some type of infection by the smell, a sickly sweet smell, when I entered the room. This has made it a quiet day for both of us.

With the Mississippi trip and then coming back to a week running a training I have not had much real time with her. I am looking forward to a quieter week and time together this week.

I spoke to my dad tonight. Thought he is still losing weight (134 last check), he is sounding stronger and says he is eating better. He stated he is not ready to dance with the stars yet. I told him next year would be fine, and I wouldn’t be surprised at all.

Last Tuesday’s blood test results were good. His numbers are staying up.

Amazing. How grateful I am that God is motivated by his love for us and not so much by our confidence in what He will or will not do.

In tonight’s note, I am also including a note I wrote while in Mississippi. I have difficulty accessing the internet when there, which is why I delayed posting it.

I have a few more reflections on Job, but I am tired tonight, so I will share more of my thoughts later.

Kevin

5/7/10

Carli called me at 3:30am last night. When I heard the phone and saw the number (her mother) fear grabbed my heart. I didn’t answer in time, but quickly returned her call. It was with tremendous relief when I heard Carli’s voice. She was/still is oblivious to the impact of making a call in the dark hours of the night.

Her days and nights are mixed up again and she has been in a lot of stomach pain, so unable to sleep anyway. She wanted to know if I was back in Tampa and was upset to learn I will be another couple of days. I asked her if she missed me. She said “No,” that she was upset with me.

I love this child. Looking at the hour, “I think you miss me a little.”

She was still upset with me when we hung up. Carli doesn’t get why I couldn’t just take her with me. Yes, I think she misses me a bit.

I am having a good visit with my dad. The day before I was flying into Mississippi to see him, he had gone to the doctor to get his weekly blood work and had a surprise for all of us. His blood numbers actually improved. We don’t know for sure what it means, but it is possible that his Graph-vs-host disease may be the culprit consuming his platelets and dropping his blood numbers. His blasts are not yet showing cancer cells. We will have a better idea next Tuesday when goes for blood work again.

Since I last saw him a few weeks ago, he has lost even more weight. He also has a couple of nasty bruises. He has fallen twice since my last visit, and now has to regularly use a walker. Yet, he is eating again, and for a dying man he looks darn good.

You would think after my experience with Carli I would have more confidence in what God may do. Yet He still surprises me.

If you’re interested, more reflections on Job.

Then his wife said to him, "Do you still hold fast to your integrity? Curse God and die!" But he said to her, "You speak as one of the foolish women speaks. Shall we indeed accept good from God, and shall we not accept adversity?" In all this Job did not sin with his lips.

Job 2:9-10

Jobs poor wife. Out of her whole life this is what gets into the Word of God about her. We don’t even know her name, but she is forever remembered as Job’s Nagging Wife.

Ok, these are not the most positive words, and yeah, Job has suffered unimaginable loss and suffering, But he is not the only one suffering. Yes, he lost his children; seven sons and three daughters. But he is not the only one who lost children.

And she is not necessarily trying to knock Job down. I don’t think she was. No, I think these are the words of woman who just lost everything important and has no way to make sense of it. I think these are the words of a dear woman who loved her husband, knew he was a good man, and was angry for him.

I am equally convinced Job dearly loved her back. It is interesting that when this book was written, it was common for a wealthy man to have at least a couple of wives and for the very wealthy to also have concubines. Yet Job tied his righteousness in part to his integrity and faithfulness to this woman.

(Job 31:9-11).

They loved each other enough they would together push through the pain of their mutual loss and have ten more children. Three of these would be daughters, and if Jobs treatment of his daughters is any indication of his love for his wife, then he loved her very much. He will leave behind an inheritance for his daughters equal to that of his sons. This was unheard of in this period of time.

No, I think we have had the wrong picture of Jobs wife. There is more to this than a nagging wife.

Kevin

4/25/10

There has not been much to report. Some bleeding today, but overall it has been quiet. Nights are still rough, Carli has a lot of stomach pain. I’m not sure how her days have been going during the week, but for this weekend she mainly slept. Tonight we played some cards worked on some stretching exercises. She had me open the curtains so she could watch the lightning storm outside.

She cried the other night. Stated she wants to walk. She wants to walk on the beach and swim.

“Very doable” I told her. That is a goal we can reach.

We have not seen much of the nurses from the regular floor. Apparently they have been too busy. I am not sure how they supposed to adjust to Carli when we get there. Carli is basically stable but still high needs. I am concerned how quickly they will be able to respond to Carli’s needs. We have been spoiled by the wonderful nurses on PICU.

Speaking to my dad he is sounding a lot stronger. His graph-vs-host disease has been down-graded to mild. So we might be out of the woods on this one.

Now, if I could just get out of the forest.

Kevin

Carli with some of her wonderful nurses. We would be lost without these ladies and thier care.



My beautiful girl.
 
(The next two updates were written while on my trip to Mississippi. I had trouble getting ready access to the internet).

4/12/10

I’m sitting in an airport in Houston with over a three hour layover. (Who would have thought that you have to go to Texas to get to Mississippi from Florida. On the way back I will be stopping off in Chicago first).  Anyway, my dad is not doing well. He is having a stronger reaction to the stem cells than was expected. I spoke to him yesterday and this morning. He stated he felt stronger, but he sure doesn’t sound good.

No, this was not a good time for this trip. But you do what you need to do.

Carli was not pleased when I told her I was going to be gone for a few days. She cried that wants to go also. This kid takes my heart.

A couple of updates regarding Carli – the fungus is not Mucor. They didn’t think it was, but it is nice to have it confirmed. Not sure the name of this new one, but it does not seem to carry the same serious concerns.

We have been pushing Carli more to sit up, (well, Edith has). A couple of nurses from the regular unit have started assisting with her care to become familiar with Carli’s needs and ways to help her have a smooth transition to the regular floor. We are going to miss these wonderful nurses on PICU, but these new nurses seem very sweet as well.

Carli has had more stomach pain and still has some bleeding, but overall appears to stronger over all.

As I sit here typing up this update, there is a woman in the row of seats behind me having a phone conversation with someone. Her voice and expressions sound just like my late grandmother (my dads mom) and a great aunt, both who have been with the lord for many years now. It makes me smile just listening to her.

Kevin

“For by grace you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast. For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand that we should walk in them.”

Eph.2:8-10

4/14/10

It was misleading to see my dad in the morning. I don’t know if he is just a morning person or if seeing me was an energy boost, but about 1:30 the crash came. Within 15 minutes I could see the change I had been told about. We were at the doctor’s office already and they gave him fluids, which gave a brief boost, however, he was out of it for the most part the rest of day.

In case you don’t know, my father has also been fighting Leukemia and has been give stem cells from my aunt, now for the second time. The first time he did fine. This time he had contracted Graph-versus-host disease. This is not uncommon, but with his previous battles, age and exhaustion it had hit him hard.

It is hard to see him like this.

I go back home tonight. Will arrive around midnight. I feel very unsettled.

Kevin

For who is God, except the LORD? And who is a rock, except our God? God is my strength and power, And He makes my way perfect. He makes my feet like the feet of deer, And sets me on my high places. He teaches my hands to make war, So that my arms can bend a bow of bronze.

You have also given me the shield of Your salvation; Your gentleness has made me great. You enlarged my path under me; So my feet did not slip.

2 Samuel 22:32-37

 

4/5/10

We were at a sunrise service. The first one I have been to in many years. The first since being in my childhood home church in North Carolina. Like those of years past, this service was held outside. Also like those of years past, we were running late.

I stepped out of the car to be immediately enveloped in “Because He Lives.” Instantly I was taken home again. My heart melted, and yes I cried. As the songs went from one old hymnal to another I tried to sing, but I really couldn’t. This was cleansing some of the deep places. The places that had grown hard that I had not even realized had toughened.

As I sat there, absorbed in the worship, I thought of the previous weekend. The memorial service for my friend’s daughter. And it struck me. I mean really struck me. It was the message and promise of today’s service that gave any meaning or hope to last week’s service. Meaning, promise and hope to all of our loses. That made grief bearable.

Because if this thing is real…this Jesus thing…God’s grace…sin’s atoned for on a cross…His resurrection…the promise that one day we too will be resurrected…

If this thing is real…well, then in Paul’s words- "O Death, where is your sting? O Hades, where is your victory?" Because even in death, if this is real, then we have hope. In the words of one of these beautiful hymns I now attempted to sing, a “blessed hope.”

Without this hope…goodness… I hate to even think about it. Would there be an end to our grief? How could there?

I will share something with you. I don’t think my dad will mind.

My parents divorced when I was three. As I grew older I grew increasingly bitter and angry. I only saw my dad maybe once a year (he lived out of state), and when I hit high school and later college I saw him even less. It seemed to me that just as I was “out of sight” I was also “out of mind.” I loved my dad, but I felt that an important part of my live was stolen and lost forever. For some reason, when Cassie and Carli were born, this loss began to effect and bother me even more. I began to unjustly see it as the root to about every dysfunction in my character.

And then God healed me. God truly healed me. In a Sunday morning service, God spoke to me and my wounds were healed.

A few years later I was in Mississippi, visiting with my dad. We were just riding around, reflecting, talking, when I realized my dad had some hurts himself. He felt like he had failed me as a father. He felt the loss of my childhood which he did not experience.

I was able to share with him from a healed heart. In paraphrase, this is basically what I said.

“Dad, I have no regrets. I did years ago. I felt like something was stolen from me. And I mourned its loss. And if this life is all there is, then it is indeed a loss. A terrible irreplaceable loss that cannot be repaid or undone. And if either one of us did not know Jesus, then it would probably still have a hold over me.

But Dad, this life is not all there is. And since you are a child of God, and since I am a child of God, I have this hope, this promise…nothing is lost in God. I have this hope that you and I are going to have all of eternity to make up for any lost time.”

I thought of this again as the sun arose and I worshiped. Nothing is lost in God.

Carli had a rough emotional Saturday, but with Easter Sunday she seemed stronger and at peace. One of the cultures have comeback positive for a fungus. We are waiting to find out the type. The culture was taken from the area of her nephrostomy tube and normally wouldn’t be so concerning, but with Carli’s history of Mucor, every positive culture is suspect. I will let you know what we find out.

The bleeding seems to be starting to slow down some.

Kevin

Behold, I tell you a mystery: We shall not all sleep, but we shall all be changed—in a moment, in the twinkling of an eye, at the last trumpet. For the trumpet will sound, and the dead will be raised incorruptible, and we shall be changed. For this corruptible must put on incorruption, and this mortal must put on immortality. So when this corruptible has put on incorruption, and this mortal has put on immortality, then shall be brought to pass the saying that is written: "Death is swallowed up in victory. O Death, where is your sting? O Hades, where is your victory?"

The sting of death is sin, and the strength of sin is the law. But thanks be to God, who gives us the victory through our Lord Jesus Christ.

1 Cor.15:51-57

1/29/2010

We were watching a movie and in one scene the family it was about was playing in the surf of a beautiful beach. Carli began to cry. I asked her what was wrong and she started moaning, “I want to walk! I want to swim!” Working herself up, upset with her circumstances, angry, depressed, it took a while before she settled down to a soft cry.

Finally I thought she was as a point where we could talk. “Carli, this is good. I am glad you are upset. I am glad you are angry. Don’t dare become satisfied with laying in this bed. You need to get angrier still. Getting angry means you still have fight in you.”

I don’t think my words comforted her, but they are true none-the-less. Defeat and acceptance are the death drums of hope.

Carli does not see it, but despite fistula’s, (we are now told she has some twenty-five), she is actually getting stronger.

Yes, she still bleeds, but the episodes are getting further apart.

Like this night, she is often an emotional mess. But since Christmas Eve, Carli has been awake and with us almost every day. Before she was almost always asleep.

She is not up and dancing. She still cannot even sit up past a 45 degree angle, yet despite this, Carli is getting stronger.

I hold my breath in wonder at what God is doing.

While I am thinking about it. Some have written about a desire to give blood. Please do so. I am told all you have to do is tell them you want to give in Carli’s name. Even if it doesn’t go directly to Carli, it helps. The PICU has been filled with these beautiful children from Haiti, and there is a fair chance your blood will go to help them.  

Kevin

"Then these righteous ones will reply, ‘Lord, when did we ever see you hungry and feed you? Or thirsty and give you something to drink? Or a stranger and show you hospitality? Or naked and give you clothing? When did we ever see you sick or in prison, and visit you?’

And the King will tell them, ‘I assure you, when you did it to one of the least of these my brothers and sisters, you were doing it to me!’

Matthew 25:37-40

1/19/10

"But to what shall I liken this generation? It is like children sitting in the marketplaces and calling to their companions, and saying: ‘We played the flute for you, And you did not dance; We mourned to you, And you did not lament.’

"For John came neither eating nor drinking, and they say, ‘He has a demon.’ The Son of Man came eating and drinking, and they say, ‘Look, a glutton and a winebibber, a friend of tax collectors and sinners!’ But wisdom is justified by her children."

Matthew 11:16-19

Another very good day yesterday. A little sad with my mother, sister, and oldest daughter traveling back to North Carolina, but a good day with Carli. She stated at one point today “I’m bored.”

My smile probably did not encourage her as I responded with great joy, “baby, that is exactly what an 18 year old in bed all day should be feeling.” We watched movies and Twilight Zone about all day. (She was given seasons 1, 3, and 5 from her grandmother and aunt. I had forgotten how good the series was.

Sometimes folks will comment on how difficult it must be to be in the hospital all the time.  I will admit that there are things I would like more freedom to do, (I have given up exercise along with a few other things this last year), but I don’t have regrets. I honestly enjoy being here with Carli. I enjoy when she is awake and we watch movies, play video games, or laugh and talk. I enjoy when she is asleep sitting quietly reading or working on my laptop by her side. So don’t feel sorry for me, at least not for this. The other things will still be there tomorrow.

Still getting a lot feedback from Carli’s story in the paper. Thank you again for your encouraging notes and e-mails. Don’t worry that we are hurt or destroyed by the negative responses on some on the TBO site.

It is fascinating to me that people who confess they don’t believe in God will then try to instruct me in what I, as a Christian, am suppose to believe. Theology from an atheist. Hmmm, now that is a concept.

Can you imagine where I would be if I followed their “advice”? One suggested that since I believe in heaven and a better life after this, that I should have already let Carli go there. Another stated that if we truly had faith in God we would stop everything and see what our “wonderful” God was going to do.

Imagine if I had listened to their nonsense. It is convenient for them now that they think my daughter is a burden to tell me to let go and trust God, but let’s say that I did this. But not now. Let’s say I did it in the beginning of all this. Let’s say that when we first saw the Doctor and got the original diagnosis of leukemia, Edith and I had declared, “We are people of faith! We don’t need treatments for  our daughter and we are not going to give them to her!”

Can you imagine what would have happened then? I have been a social worker for most of my adult life and I can tell you exactly what would have happened. And then imagine if she had contracted the fungus while we had refused to give her treatments… We would still be in the news today, but you would be reading about our court case as Edith and I would be headed to prison on charges of child abuse and possibly murder. This is not an exaggeration. This is exactly what would happen.

And the same people who mock my faith now would be mocking me then.

But still be we are called fools even though by their own standards we have not acted foolishly.

Oh how generous the statements they have given out of their love and concern over my sanity and the well being of my daughter.

It was asked a few times and in a few ways how I could believe in a God who, if he is real, is a cruel tyrant for doing this to my daughter. 

I do believe God is in control. And though I don’t agree with the assertion that God ‘caused’ this, if God is truly in control, then he certainly “permitted” it. Any answer I would try to give you regarding why God permits what he does, is at most my best guess. If you have read my previous entries, you will see I have wrestled with this subject again and again. I don’t know why, and God has not felt a need to explain all his decisions to me.

But I can tell you why I believe in him and in his word. It is not a matter of “the Bible says it. I believe it. And that settles it.” (though I certainly do believe in the Bible.) My faith is built on encounter and experience.

What does that mean? It means that I don’t believe in God because the Bible tells me to. No, I believe in the Bible because I have encountered the God of the Bible. I believe in prayer because I have experienced undeniable answers to prayer.

That knowledge and experience has not given me a corner in the market of understanding all his ways or purpose. He is too great for my comprehension. I am less an ant trying to take in the height, width, and depth of a Mount Everest. I may not be able to comprehend even a fraction, but for me there is no denying that I am in the presence of a mountain.

 I have rambled again.

One last word for the atheist who would advise me in my Christian faith. A closing scripture.

“Satan, get thee behind me.”

Kevin


1/17/10

Another good day. Carli is watching the Golden globes with family and friends and yelling at her brother. I think yesterday charged her spirits.

It is now about 9:30pm and I put off reading the online comment until now. Wow and again wow. A lot of encouraging comments for which we are grateful, but so much anger as well.  Anger that Medicaid is paying for our daughters care was a common theme, second only to those angry that we are foolish enough to believe in a God who must be incredibly cruel if he does exist.

I could respond on the TBO site, but why? To try and win someone over? It is not likely to happen. If they think helping my daughter is a waste of Medicaid dollars and blood products some other child needs, I am probably not going to be able to change their hearts and minds. It will take finding themselves in a situation where they need Medicaid and blood products to do that.

The same with the subject of God. People simply are not won by argument. If they are won, it is by encounter. Sometimes by an encounter with people in whom God indwells. Other times by encounter with God himself.

But I do have a few thoughts I will share with you.

As far as Medicaid dollars, well, our situation is what it is. Sorry we didn’t time this better. Not that any insurance would have been enough to cover this.

In regards to the need for blood product; yes, my daughter uses a lot. Every time you give blood, you are helping someone like my daughter. As far as I am concerned, giving blood is one of the best investments ever made. You are heroes to me. But I have to say that as far as I know, no child has died because my daughter took the last pint.

At one time Leukemia was an incurable disease. I lost a grandmother and a great-aunt to leukemia. But now, despite the odds, my father had defeated leukemia for the third time, and the survival rate for ALL is 98%. The knowledge for today’s successes was built on the attempts and failures of the past.

When we were told Carli had Mucor, we were basically told is was incurable and she would not live. Today, they took her off the medication Micafungin. Curable or not, they think the Mucor is gone.

You might be interested to know, one of Carli’s Infectious disease Doctor’s came back from a conference where Dr. Walsh (probably the leading expert on infectious disease in America), was the speaker, and he spoke about Carli’s case in depth in discussing effective treatment and what they are learning.

So though I would never wish to have gone through this, there has been value in our experience in that it offers hope and possibilities for future cases. (it is the aftermath of the disease and the surgeries that we are now dealing with.)

I have written a lot already, maybe too much. But if you have the patience, tomorrow I’ll be back and post a few thoughts about our craziness for believing in a God who must be cruel for causing this.

Thanks for your listening ear,

Kevin

And we know that all things work together for good to those who love God, to those who are the called according to His purpose.

Romans 8:28

1/16/10

A great day. A truly great day. Carli looked beautiful for her 18^th birthday.  I wish you could have seen her smile. There were some photos taken, but she wouldn’t let us take too many. She doesn’t realize how beautiful she is. She sees herself as fat and swollen. She does not realize that when she smiles she is radiant.

It was a great turnout for her party. Thank you everyone who made it. You made it a success. There were many wonderful surprises. Old friends, new friends, and family. Those wonderful nurses came on their day off, help Carli with her makeup and getting dressed, Carli smiling from ear to ear.

On a stretcher Carli was rolled into the room where we were having party, and crowd of friends and family singing “Happy Birthday.” This was Carli’s night. And she clearly enjoyed herself. She stayed for three hours or so before she decided she needed some rest.

I finally read the TBO article. If you are interested in is on TBO.com, just type in the keyword “Carli.” I am very thankful for Michelle Bearden’s article. I feel like she did a beautiful job.

What I found most interesting were the responses. Most were positive, which we truly appreciate, but some were just angry. My first thought was, “What in the world did I do to you?”

Some people act like we have stolen blood from their children. I have to tell you, it used to bother me as a man that I couldn’t take care of my own daughters medical bills. After a lifetime of labor and work, this happened at the one time I didn’t have any insurance.  But then my government gave some 700 billion dollars to a banking industry that unrepentantly stole from us all, and I quit worrying about it.

Considering the financial mess or nation has been in for the last two years, I am now just grateful I have a job.

But what really jumped out were the comments by those who were just angry at our faith in Jesus, and our steadfast hope for a miracle. Why in the world does something I say matter so much to someone who has never met me? Why do they care and find so much offense with what I believe?

If this helps me stay sane to cope with an unbearable situation, and I am not breaking any laws or hurting anyone, then why does anyone care?

I have not told anyone they have to believe the same thing. This may sound a bit callous, but  I really don’t care what they believe. If they believe in Jesus, fine. If they don’t, fine. It is not my problem. They will have to work it out with God themselves. They can believe in evolution, Buda, or even the great pumpkin, it really doesn’t hurt or offend me.

But if I say I believe in Jesus, man that strikes a chord.

Brit Hume recently stated in an interview that the two most explosive words in the English language are Jesus Christ.

He is right. There is something about the Jesus that demands a response. He doesn’t leave any middle ground. You may want to say, well I believe he was a good man, maybe a prophet, but I don’t believe he is the Son of God or the only way to God. Jesus didn’t leave that option.

In his own words, "I am the way, the truth, and the life. No one comes to the Father except through Me.”  John 14:6

His words, not mine.

And that is probably why the name of Jesus causes such a reaction. He blatantly challenges all other beliefs. Not just the beliefs in other gods, but also our beliefs in ourselves.

To speak the name of Jesus is not just to speak of faith. It is a reminder that there also may be an accountability. We are not gods unto ourselves.

But this reaction is certainly nothing new. This is the way it has been for some two thousand years.

I don’t know if you have given this any thought, but Jesus was not killed for his miracles or works or even his teachings.

 Jesus was killed for who he claimed to be.

Be blessed,

Kevin

But Jesus kept silent. And the high priest answered and said to Him, "I put You under oath by the living God: Tell us if You are the Christ, the Son of God!"

Jesus said to him, "It is as you said. Nevertheless, I say to you, hereafter you will see the Son of Man sitting at the right hand of the Power, and coming on the clouds of heaven."

Then the high priest tore his clothes, saying, "He has spoken blasphemy! What further need do we have of witnesses? Look, now you have heard His blasphemy! What do you think?" They answered and said, "He is deserving of death."

Matthew 26:63-66

1/15/10

Quite a bit of bleeding the last few days. It is not “frank” bright red, but it has been fairly consistent. Some stomach pain the last couple of nights, but Carli has not really been complaining of pain today. She seems to have a bit of a golden sheen today, but her counts are not looking bad.

 Big days. Carli’s story will be on TV – NBC news channel 8 (actually on channel 7 here in Tampa if you are on Brighthouse). Look for it at 5:30pm and again Sunday morning at 9am. Her story will also be on the online version today of the Tampa Tribune. On Sunday she will in the Tampa Tribune again – this time On The Front Page!

Wow is right!

I want to thank Michelle Bearden again for her time and interest in Carli. I never expected all this when she first e-mailed that she would like to meet and hear about Carli.

I know that this story will draw up a lot of interest and a lot of people will be checking this site for the first time.  If our experience from last year has taught me anything, it has taught me to expect one thing – many people are going to be asking “what do we want?” You might be one of them.

Well, you are right. I do want something from you. But only one thing. I want you to pray for my daughter.

It is a miracle that she is even alive. But she needs more than that. She needs to be healed.  My daughter needs a miracle.

That’s it. That all I need. It is not a big thing with God.

This scripture has been on my heart lately. I have probably shared it before and  you may already be  familiar with the text. Many people misunderstand the text and get hung up on Jesus word “oh you of little faith,” and they miss the point.

The issue was not their ability to control the storm. Nowhere in the scripture will read of the disciples have the “faith” to control the weather. The issue was the person of Jesus. Was he who he claimed to be? Was (is) he truly the messiah, the Son of God, God incarnate? Because if he was who he said he was, then Jesus was already in control… He only told the storm to be still for the disciples peace of mind.

Just food for thought. Some people will comment Edith or myself about our great faith. The truth is that our faith is not really any greater than anyone else’s. The only difference is where we place our Faith. Our faith is in Jesus. That he is who he says he is. That he has even this storm under control.

If you let him, he will get you through your storms as well.

Kevin

And a great windstorm arose, and the waves beat into the boat, so that it was already filling. But He was in the stern, asleep on a pillow. And they awoke Him and said to Him, "Teacher, do You not care that we are perishing?"

Then He arose and rebuked the wind, and said to the sea, "Peace, be still!" And the wind ceased and there was a great calm. But He said to them, "Why are you so fearful? How is it that you have no faith?"

And they feared exceedingly, and said to one another, "Who can this be, that even the wind and the sea obey Him!"

Mark 4:37-41

1/12/10

Big week, Carli is turning 18 this Saturday. This is your official invitation. And we would love to see you. Tampa General is opening up the children’s play room on the fifth floor and it looks like Carli (whole bed), will be wheeled in.  Edith is asking that you please arrive at 4:30pm. There will be a photographer from the newspaper who will want to take a large group photo of us singing Happy Birthday. This picture, along with an article about Carli will be in the Faith and Values section of the Tampa Tribune on Sunday.

Carli’s story will also be on the news, I think Friday night at 5:30 and again on Sunday for about a minute or two. We have spent a while with Michelle Bearden who is writing and producing the story. Very sweet person.

I told you, big week.

Carli has been doing well. Some bleeding over the weekend, but nothing too heart stressing.

A really good day yesterday. Carli has a new homebound teacher. She seemed to connect with her right away. Despite our previous attempt to help Carli with school, Edith and I were not very effective, and up to this point, Carli really did not seem to have the strength for much of anything. Lately we are actually seeing a little more “Carli Awake.” Which is very nice.

I have to tell you, my family got a big laugh from my last entry when I stated I had more patience. I just wish they would stop laughing.

We are really honored with the interest In Carli and her story. Humbling. And I am not just talking about Michelle’s interest; I am talking about your interest. Edith and I were asked what one thing we would share with another family faced with the tragic illness of a loved one or child. We both had the same answer. Don’t try to stand alone. Get help. Get people praying for you.

We did not realize the serious of our situation when this first started. We were very confident and soon making our plans for when this was past us. When Carli had her major surgery, and we learned about Mucor, we quickly realized these waters were over our head and there was no land in sight. This thing was bigger than us. Bigger than my prayer life. Bigger than my faith.

I did what I always do when I am in trouble. I began calling my family. Well, my mom first, then my family. And after I had called everyone I could think of, I got on my e-mail and e-mailed everyone on my address book, Christian or not, and asked them to do one thing. Pray.

And people have. Still are.

The purpose of this web site for Carli was not just for us to pour out our hearts, it was to let family and friends know what was going on with Carli and how to pray for her.

Did it work? Well, judge for yourself. For the purpose of the article I was asked to give a timeline of surgeries and everything Carli has been through. I couldn’t do it. She has been through too much. But here is a rough list of what she has lived through this last 17 months.

July 16, 2008 - Saturday. Carli is increasingly sick. We enter St. Joseph’s emergency room and we are initially told we have a very sick girl.

July 22 – Tuesday. Carli is diagnosed with ALL. We are concerned, but confident, because ALL has a 98% cure rate.

The fall, Carli was in bathroom and had a terrible fall. When I rush in she is on the floor having violent seizures. Up to this point, this is one of the scariest things I have ever seen. She has not had seizures previous to this that we know of. We do not know if this was a reaction to the chemo, a pre-existing condition, or from hitting her head on the counter.

Carli’s bowels perforate. The Oncologist is upset, crying and tells us that our daughter will likely not live. This is Carli’s first major surgery. Our daughter comes out of this a mess. They are not sure about the condition of Carli’s right Kidney. They are not sure if the connection from kidney to bladder was cut or eaten through by the mucor, but they cannot make the connection.

Carli’s bowels are again leaking into her abdomen. We have a meeting with the medical team. Basically we are told for the first time that Carli will die. We are told that they believe Carli this thing Carli has is Mucor and that it really is not treatable.

A drain is run from her right kidney to alleviate urine and infection.

There are medications they will use, but this fungus is very resistant to medications. The only real answer is to cut it out. They have had experience with only one other case of Mucor. They kept cutting away till there was not much left, and the gentleman still died.

We go in for surgery again. It appears to be successful. Two surgeons worked together.

Carli almost bleeds to death. The mucor eats a hole into her external iliac artery. She pours blood from every opening; nose, ears, and wound. She is violently vomiting blood. She is rushed to Radiology and a blockage is placed higher up in the artery cutting off the blood flow. It is hoped Carli’s other veins and arteries will pick up the load. The doctors come to understand they really have not beat the mucor.

We are told that it is a miracle Carli lived. But she is likely to lose her leg. We are later told she will likely lose her foot. Finally we are told she will probably lose a toe. (At this point her leg is fairly good, but it does surprise nurses who don’t know her and who try to get a blood pressure reading on this leg).

Carli’s organs appear to be shutting down. We have another full meeting of the medical team, I guess so they can explain this as a group and so we will begin to make preparations.

Carli’s condition deteriorates. She is having a lot of trouble breathing. Given many breathing treatments.

The PICU Doctor meets with Edith and I. He wants to make sure we understand Carli’s condition. Spells it out very clearly that Carli is dying. Shows us on film the progress of the Mucor into Carli’s organs. It is making it’s way up where it will finally rest her lungs. Her organs will all shut down and she will die. We are asked for the first time if we want to try to make her comfortable and let her die peacefully.

That night Carli is struggling to breath. We are told again she is dying by another doctor. I am told that in this doctors professional opinion if she is placed on a respirator, she will die on it.

Carli is placed on the respirator and I think I have lost my daughter.

Carli not only does not die, she begins to make a remarkable recovery.

Carli has surgery again. More intestine is cut out. They attempt to repair holes in her stomach. Her gall bladder is removed. We learn later it is full of mucor.

Carli appears to be getting stronger and stronger. We can get her out and about in a wheel chair. She is even able to go see her sister graduate from High school.

Carli’s body has done a strange thing. She still has holes in her stomach, but everything is collecting in a cavity in the right side and basically comes our another fistula to the outside. The tissues in this area have toughened and it appears to be self contained. There is a lot of concern that this cavity is full of mucor, but no one wants to touch it. We are concerned that if we do not cut this out and all the mucor, Carli will die.

A specialist at TGH agrees to take Carli’s case. He is very confident. We are talking about Carli’s expected recovery. She may finally be able to get rid of the drains.

The day of the surgery. The doctor finds he is in over his head. Carli’s stomach is a mess. Her intestines, which were working up to this time, no longer work. Carli cannot even be closed. She has an open wound over which they place a wound vac.

They try to run a scope both up and down to try to find out why Carli’s intestines are blocked, and to find an opening somewhere. They cannot.

The bleeding starts. We have been dealing with internal bleeding ever since.

We have a meeting with the doctors. There is nothing they can do but wait and see. They are talking about sending her home. Edith and I really do not realize what they are talking about is a hospice type of situation. They are expecting her to die.

We meet with the PICU doctor. He catches on that we are on the same with the surgeon and the other doctors. He states clearly that Carli is dying.

When I next speak to the surgeon I repeat this conversation and ask if this is true. He confirms what the PICU doctor stated.

The bleeding continues off and on. Carli is taking a ton of blood products. Her Platelets are forever dropping. We really do not know if they did get all the Mucor.

We have another meeting with the surgeon and a nurse. They basically wanted us to consider to stop giving Carli blood products and again asked to let her die peacefully. This bleeding is a worsening condition. We are told to prepare Carli and ourselves.

After several months, we are again told Carli is about to bleed to death. We are told “This is a new chapter, folks.” Indicating the end is here.

Carli’s liver and kidneys appear to be giving out.

That is a rough guesstimation. I don’t think everything is in order but it is fairly close. Still, not everything is covered. Here is some of what is not included:

Chemo treatments.

The process of Carli losing her hair.

The multiple times she was placed on a respirator while at St. Josephs hospital.

The many fevers up to 104 and being rushed to PICU.

OR every Tuesday and Friday for wound changes.

MRI’s, CAT scans, x-rays, and multiple other test.

Our sessions in the hyperbaric chambers over at St. Joes. (The doctors over here were not very impressed with hyperbarics as a treatment, but when the day we started hyperbaric treatment was the day Carli’s severe fevers stopped. She was getting stronger and more energetic.

The late nights cleaning Carli and a blood soaked bed.

Despite all of this, and more than a year after some of the worst nights of our life, I have to say it: We are still here.

Kevin

Let us hold fast the confession of our hope without wavering, for He who promised is faithful. And let us consider one another in order to stir up love and good works, not forsaking the assembling of ourselves together, as is the manner of some, but exhorting one another, and so much the more as you see the Day approaching.

Hebrew 10:23-25

1/8/10

Just in the last couple of weeks. There was one poor child whose bones were more breakable than glass. I don’t know how the child survived birth. They could not even put a blood pressure cup on for the likelihood that they would shatter the pour Childs arm or leg.

Another child I have yet to see due to bandages covering the burns that must cover his body. His young father sits with him quietly.

A child was brought in up the hall from us who was rushed to surgery the other night to remove a piece of the Childs skull to relieve some of the brain swelling. The dad said he fell down the stairs. The doctor and child protective service seem to disagree. The child can’t be more than two or three, lying there alone with rods and pins holding him still.

Since this has happened with Carli, I cry more. Not a Boo Hoo. And not always tears of sorrow. Many times tears of joy. Silly nothings on TV or on a movie will hit me. Sometimes just giving Carli a kiss. Or holding my youngest. Or watching my son succeed, or welcoming Cassie home on those now rare breaks. When watching my kids play cards.

And I laugh. At myself a lot. At my children whose smarts amaze me.

I have more patience now. Well, not always. I don’t have any patience for meanness. But I have patience for the big things. I have learned I can sit quietly by Carli’s bed all day, every day.

I don’t have to be entertained nor feel that I have to entertain.

I love better. I love more.

I cherish moments.

Carli has been steady. More bleeding the last couple of days, but nothing major. When awake she lately complains more of stomach pain, body aches, and headaches.

I thought that tonight I would share the lyrics to another song. We have a playlist of songs we often play in Carli’s room, especially when we are praying (which is a lot). Most of the songs are worship songs but not all. I have included an old song by Phil Keaggy. “I Will Be There”

I will be there when you cry,
I will be there when you need me,
I will be there when you fall,
I will be there all the time.

There's a road stretching out
And it leads to your desired haven.
Don't look back and don't you fear
Cause I'll be there.

I will be there when you cry,
I will be there when you need me,
I will be there when you fall,
I will be there all the time.

When you feel like giving up
And you fall on your knees in desperation
There's a strength beyond compare
Cause I'll be there.

You can believe it's true, cause I'll be there
I'll never leave or desert you
Through trials and temptations, oh I will be there,
I'll be there through the darkness, just call me.

Your every heartbeat, well I give to you
And every breath you breath I give to you
And when you're weary and you can't go on
Just look up anywhere
Cause I'll be there. I'll be there.

I will be there, I will be there
Every time you need me.
When you fall, when you fall, and I'll pick you up.

On that road stretching out
And it leads to your desired haven
Don't look back and don't you fear
Cause I'll be there.

I've been on this road a long long time ago,
And I lead you now to your desired haven.
Don't look back, but do draw near
Cause I'll be here, yes I'll be here,
You know I'll be here.

Kevin

12/27/09

A beautiful Christmas. Most of my family from North Carolina came to be with us for Christmas. It was a good time together. Carli has actually been a awake and mentally with us for the most part. A week ago I wasn’t really sure she was going to be here. Edith stated the doctors and nurses were expecting Carli may pass away along with another child on the unit. The other child did.

On Christmas eve, my family gathered in Carli’s room to have communion. It was common when Edith and I lived in NC to have communion at church on Christmas Eve. This was the first time we have ever had communion with only our family, ( I did have it alone with Carli on a Sunday morning a few months back). I don’t think I have ever had a communion that simply felt so holy.

So how is Carli? I hope you understand that when I answer that question, my answer is relative to the moment and to Carli. For example, today Carli is doing relatively well. Heart rate is looking good, oxygen looks strong, blood pressure is low but steady and higher than other days. Blood in her urine. Not complaining much of pain. She had her wounds changed today without too much bleeding. We’ll probably watch a movie tonight depending on what Edith rents.  

But here is the bigger picture. Though it does not look like she has hepatitis, Carli’s liver is dying. The last CT scan showed spots and lesions of dead or infected tissue. It is wearing out and despite all the blood products, is not getting enough oxygen or blood circulation. Her kidneys are also wearing out.  Nothing is healing. She now has multiply fistula’s in her stomach and intestines. Her tissue is riddled and weak. She bleeds daily, just at different levels and to different extents.

Is the Mucor still alive? We don’t think so, but it doesn’t have to be to kill her. Why? Think of it this way; imagine your house is consumed by termites. You call in the termite specialist and he is able to kill all of the termites and drive them out of your house. Well, the termites are gone, but now the wood that makes up the frame your house is brittle, dry rotted and decayed. You cannot touch it without it falling apart in your hands. That gives you some idea of Carli’s situation.

Carli is dying a little every day. And unless God does something, this will be the last Christmas we celebrate together.

I don’t say this to say that God won’t, I am simply stating the facts that presently are.

So what do we do? Simple – we fast and pray.

I want to give a special thanks for all the cards, letters, e-mails, and support you have given our family. I can’t tell you how often even a brief a note has brightened our day. You have blessed us again and again. You have been very generous to us and again we thank you.

I want to also give a special thanks to visitors. It is unexplainable how people I have never met other than through notes and e-mails feel like old friends when we finally meet in person.

By the way, my car is now running. A good friend, brother in Christ, (and fishing guru), sent his uncle over to help and fixed it right up.

Kevin

But you, when you fast, anoint your head and wash your face, so that you do not appear to men to be fasting, but to your Father who is in the secret place; and your Father who sees in secret will reward you openly.

Matthew 6:17-18

12/20/09

Into our new chapter.

“Lord, you have never failed me.”

This is my mantra.

“You will not fail me.”

This is my declaration of hope. I say it again, not to remind God, but remind and encourage myself.

“Though I have failed time and again, and fear had gripped my heart, you have always been here. Your love has been consistent and true.  You have never failed me in my time of need.

And Lord…I need you now.”

Edith called me this morning while I was in church watching Cayla in the Christmas presentation. They are running test on Carli. She likely has a form of hepatitis in her liver. They are concerned kidneys and liver may be failing. She is retaining a lot of fluid which is making her breathing more difficult. They could not hear her pulse so used a type of Doppler to get a reading. Circulation everywhere is poor. Of course she is bleeding.

And last night my car breaks down and is now parked next to a motorcycle that has not run in over a year. Thankfully Cassie (who was using it last night) was able to get it home. Though I don’t know how. The belt was off and a piece that had broken off was sitting on top of the engine.

I have to assume it was just the angles of God.

Hearing the fear in Edith’s voice shook me, but I realized as I watched these wonderful children act out and sing the Christmas story that I was not deeply afraid (a little maybe), angry or even frustrated.

As I puzzled over my emotions I came to another realization. “Kevin, you might really be crazy. You still think God is going to heal your child.” And yes, I answered myself back, “Well, as of this moment on the 20^th day of December, 2009, the Lord has never failed me. Anyway, isn’t Christmas all about miracles. Surely God has one more Christmas miracle for me.

Lord, you have never failed me.”

Kevin

I was thinking about this text this morning before speaking to Edith. Read the whole chapter if you get a chance. There is powerful message is this simple story. Jesus goes in search of this man. The man does not even know who Jesus was, had no faith or expectation, and after thirty-eight years had not reason for hope. Yet Jesus knew him. He was never forgotten by God, despite the way things may have appeared. I am reminded of a man I read about this week in the news, who after some thirty-five years wrongfully imprisoned, was set free this week. There are still Christmas miracles.   

Now a certain man was there who had an infirmity thirty-eight years. When Jesus saw him lying there, and knew that he already had been in that condition a long time, He said to him, "Do you want to be made well?"

The sick man answered Him, "Sir, I have no man to put me into the pool when the water is stirred up; but while I am coming, another steps down before me."

Jesus said to him, "Rise, take up your bed and walk."

And immediately the man was made well, took up his bed, and walked. And that day was the Sabbath.

John 5:5-9

12/16/09

The surgeon tells me we are in a new chapter. By that he means the final one. We are at the place where a vein or an artery is going to blow.  This in spite of the fact that Carli has actually been looking stronger this week. She bleed some early Sunday morning, but it was brought under control fairly quickly.

She went into OR for her wound care change, coughed or something, and the blood began to pour. The surgeon finally came out to talk to us, stating that after over putting in over a hundred sutures he could get this under control and would not keep doing this. I am not sure exactly what that means.

“I will not be doing this again tomorrow!” I am not sure what that means either. If she starts bleeding he is not going to try to stop it? Is there some other option to her wound care? Are we suppose to say, sure, no problem, we’ll just let her bleed?

And where did this new burst of anger and frustration come from? Carli wasn’t bleeding when she went to OR.

This was like another punch in the gut. It knocked the wind out of me. It dazed me. But I have had the wind knocked out of me a lot, and surprisingly this did not send me back into the dark place I was a week ago.

Both Edith and I stayed with Carli last night. I was planning to stay here all day today. Yet, again, the bleeding has really slowed down. And for a dying kid, Carli sure is very cranky this morning.

I think I will go to work.

Kevin

I am no Jacob, but here is a scripture that is on my heart a lot.

Then Jacob was left alone; and a Man wrestled with him until the breaking of day.

Now when He saw that He did not prevail against him, He touched the socket of his hip; and the socket of Jacob’s hip was out of joint as He wrestled with him. And He said, "Let Me go, for the day breaks." But he said, "I will not let You go unless You bless me!"

So He said to him, "What is your name?" He said, "Jacob." And He said, "Your name shall no longer be called Jacob, but Israel; for you have struggled with God and with men, and have prevailed."

Genesis 32:24-28

12/11/09

I am doing better now. I’m not sure why but I am. I couldn’t tell you why some weeks I feel more lost than others or why some weeks (well, days) I’m not scared of anything and my confidence soars. I wonder sometimes if I am losing my mind.

I think Carli is wondering the same thing about herself. She stated the other night she did not want to live. She was bleeding, and blood was leaking, pooling in her bed. The nurses where in changing her bed for at least the third time. After she said it for the third time, I told her that was enough. I do not blame her, but I cannot keep hearing it.

It may surprise you, but I don’t get angry or blame God that this has happened to my daughter. I count these things the cost of living in a fallen world. And I don’t cry “why me? Why not someone else?” first I certainly don’t think we are better or more deserving than anyone else, and second, I really can’t think of anyone I could hate enough to wish this upon them. Maybe a Hitler, but I imagine he is facing a lot more “heat” than this.

My frustration is not that we got into this, but that we have not been pulled out of it.

It is challenging me more than I can tell you. It challenges my confidence in the love and goodness of God. It challenges my confidence in prayer.  It has caused me to question what I can expect in this relationship with God. I see many of my doctrinal beliefs in a very different light.

I question myself and the fact that despite my tantrums I cannot even help myself from again running to God. To this last question I don’t have to ask for long. I know why I run to God over and over again. Because as dysfunctional or crazy as I might be, up to this point, God has never failed me.

I have failed him many times. Yet He has never failed me.

This is the worst challenge we have ever been through, but it is not the first.

So, I take a deep breath, look up to heaven, and say “Ok Lord, let’s do this again.” And once more I start pacing the floors and pray.

Kevin

"and command them, saying, ‘Take for yourselves twelve stones from here, out of the midst of the Jordan, from the place where the priests’ feet stood firm. You shall carry them over with you and leave them in the lodging place where you lodge tonight.’" Then Joshua called the twelve men whom he had appointed from the children of Israel, one man from every tribe; and Joshua said to them: "Cross over before the ark of the LORD your God into the midst of the Jordan, and each one of you take up a stone on his shoulder, according to the number of the tribes of the children of Israel, that this may be a sign among you when your children ask in time to come, saying, ‘What do these stones mean to you?’

"Then you shall answer them that the waters of the Jordan were cut off before the ark of the covenant of the LORD; when it crossed over the Jordan, the waters of the Jordan were cut off. And these stones shall be for a memorial to the children of Israel forever."

Joshua 4:3-7

12/7/09

We are scared to move her. Scared to lift her and slid her back up in her bed. Scared to turn her on her side so she can be washed. Scared to even lift her upper body and shoulders to fluff her pillow. Scared that every move she makes is going to make her bleed.

And it does. She bleeds even now.

My heart aches when I pray, an honest dull aching pain. Why am I even praying? God’s silence crushes me.

Where is my faith? It would be easier if I didn’t believe. I would not feel betrayed and abandoned. But I have seen too much not to believe. I have experienced too much to fool myself.

And I wonder, “Lord, are you bent on destroying me? Are you determined to destroy my faith?”  My confidence is broken.

I am told by many God is doing something great. Surely he is. Surely he must. Otherwise I might make the mistake of thinking his silence is cruel.

Kevin

As the deer pants for streams of water, so I long for you, O God. I thirst for God, the living God. When can I come and stand before him? Day and night, I have only tears for food, while my enemies continually taunt me, saying, "Where is this God of yours?"

My heart is breaking as I remember how it used to be: I walked among the crowds of worshipers, leading a great procession to the house of God, singing for joy and giving thanks—it was the sound of a great celebration! Why am I discouraged? Why so sad? I will put my hope in God! I will praise him again—my Savior and my God! Now I am deeply discouraged, but I will remember your kindness—from Mount Hermon, the source of the Jordan, from the land of Mount Mizar.  I hear the tumult of the raging seas as your waves and surging tides sweep over me. Through each day the LORD pours his unfailing love upon me, and through each night I sing his songs, praying to God who gives me life.

 "O God my rock," I cry, "Why have you forsaken me? Why must I wander in darkness, oppressed by my enemies?"  Their taunts pierce me like a fatal wound. They scoff, "Where is this God of yours?" Why am I discouraged? Why so sad? I will put my hope in God! I will praise him again—my Savior and my God!

Psalm 42

12/3/09

Long night last night. Heart rate really high, blood pressure really low. Bleeding still hasn’t really stopped but did finally slow down this evening after Carli was given a medicine called “factor seven.” For a brief while Carli woke up and was talkative. Talked to her grandmother on the phone, and tried to hit Christian when he attempted to steal a kiss. Presently she is out again.

I heard an interesting comment on the radio. It was actually part of a message spoken on a Christian college campus many years back, that I guess they felt was relevant for today. Anyway, he makes this statement regarding healing that we should not expect healing as though God owes us anything, that everything we have is a gift from God.

Well, right, but wrong. No, God does not owe us anything. Yes, everything we have is a gift from God. But no expectations? I disagree completely. Of course we should have expectations. Expectations based not on debt, but on relationship.

How can we say we have a relationship with God not just a religion and then say we have no expectations in the relationship? In that case, you don’t have a relationship.  

Every true relationship has expectations. God certainly has expectations for you and me. He requires our obedience, love, commitment, and of course, trust. He tells us to come to him with the heart and trust of a child. Jesus tells us in the “Lords Prayer”  and many illustrations to relate to him as Father. I don’t know about your children, but mine have expectations.

Expectations that I will provide for them. Expectations that my love is unconditional. Expectations that I will protect them. And Expectation that if they are hurt or wounded that I will do what is within my power to heal and bind their wounds. Not because I owe them anything, but due to our relationship and my love for them.

Do you think God requires of us to expect less from him. I don’t think so. In fact, I think, (and yes, I am guessing here), I think God is honored by our expectation.

Having the expectation of him to  move on our behalf as a father is an expression of our faith that he is our father. Let that one soak in.

Tonight, like last night, and the nights before, I wait on my father, my heavenly father, to protect my daughter and to heal her. As an act of his love, because brings him honor, and because it is what I should expect from him.

Kevin

Pray like this: Our Father in heaven, may your name be honored…

Matthew 6:9

12/2/09
Bleeding again.

Kevin

 

11/30/09

All is now quiet. Family have headed back to North Carolina and Mississippi. I miss them already. It was a good Thanksgiving, though it felt subdued and a little sad. Last year on Thanksgiving we took Carli home for a few hours for the first time. This time we a long way from a trip home, if we are on the way at all.  My daughter Cayla’s school/PTA provided most of the dinner. My mom, pops, and my sisters cooked the meal. Pops fried the Turkey. It was wonderful, and my mouth waters still from thinking about it.

My dad and LaRue made it up Saturday night. What an amazing trip after his battles.

Cassie was here. And now I am dying to steal another hug.

But it is back to us.

Carli had some bleeding last night. Not some, but a lot. You would think that by now I would handle it better. I don’t. I still stay on edge. Fret, worry, very temper mental. I am not very gracious. Good chance I owe somebody an apology. If I said anything short or ugly or if I just wasn’t a very nice person, this is my apology.

Plus I claim insanity.

I remember a time when I thought I had everything figured out. Of course then I didn’t have a wife or kids. I know better now.

Carli has had what I consider a really good day today. Other than when she was bleeding, (and through much of that also), she basically slept through this last week. Today, the bleeding slowed down immensely and at about 5pm she again “woke up.” What I mean by that is not that her eyes were just open, but for a span of a few hours she was back with personality and hilarious crankiness.

Some of her beautiful friends came up and they talked about friends and watched a dvd.

A nice evening. I need it.

If there is anything good about this situation, I think it is the perspective it give you on life. And on love. I have always love my children. Many times I have commented that of all the callings in my life, the one I have know I had without ever a doubt was the calling to be their father. I enjoy being their dad. Always have. But as much as I have love them, sometimes when I am just thinking about them or talking to one of them, or even just watching them, my heart floods.

I am a blessed man.

Kevin

I was drawn to this in the morning. Actually to the whole chapter, but I will just put down these verses:

Save me, O God, for the floodwaters are up to my neck.  Deeper and deeper I sink into the mire; I can’t find a foothold to stand on. I am in deep water, and the floods overwhelm me.  I am exhausted from crying for help; my throat is parched and dry. My eyes are swollen with weeping, waiting for my God to help me.

Those who hate me without cause are more numerous than the hairs on my head. These enemies who seek to destroy me are doing so without cause. They attack me with lies, demanding that I give back what I didn’t steal.

O God, you know how foolish I am; my sins cannot be hidden from you. Don’t let those who trust in you stumble because of me, O Sovereign LORD Almighty. Don’t let me cause them to be humiliated, O God of Israel.

For I am mocked and shamed for your sake; humiliation is written all over my face. Even my own brothers pretend they don’t know me; they treat me like a stranger.

Passion for your house burns within me, so those who insult you are also insulting me.

When I weep and fast before the LORD, they scoff at me. When I dress in sackcloth to show sorrow, they make fun of me.  I am the favorite topic of town gossip, and all the drunkards sing about me. But I keep right on praying to you, LORD, hoping this is the time you will show me favor. In your unfailing love, O God, answer my prayer with your sure salvation.

Pull me out of the mud; don’t let me sink any deeper! Rescue me from those who hate me, and pull me from these deep waters. Don’t let the floods overwhelm me, or the deep waters swallow me, or the pit of death devour me. Answer my prayers, O LORD, for your unfailing love is wonderful. Turn and take care of me, for your mercy is so plentiful.  Don’t hide from your servant; answer me quickly, for I am in deep trouble!

Psalms 69:1-17                                                              

11/25/09

For the most part all has been quiet. Carli had a heavy episode of bleeding the night before last, but they seem to have it under control for now. Edith stated she was up late last night into the early morning hours. Otherwise she has been asleep solidly for the last two days.

My sister Stephanie came into town a couple of days ago with my niece. The rest of my family is coming down from NC and will be here sometime late tonight. Cassie will be here as well, on break from college. I am excited to see them. It feels like it has been forever.

My Dad and LaRue should be here sometime Saturday evening and will be with us on Sunday. They are already in Pensicola to share Thankgiving with some of LaRue’s family. The fact he is making this trip is a testimony to Gods greatness. Since 97 he has survived cancer four times. First prostate cancer, the other three times LMA. Just hearing my Dad’s voice is a reminder of Gods grace.

We need those reminders. At least I do.

When I was in prayer last night, praying again the same prayer, I thought about an experience many. Many years ago when I was in college earning my BA. My college was a lot smaller back then, and I had the same professor for many of my classes. Due to this, some of the reading requirements were basically the same, so I go this idea and began submitting the same reading reports to different classes. I would re-type them, but it was basically the same report on the same book. At first I thought it was funny, I was getting the same grade over and over. Surely he would say something to me. But he didn’t, and about my third or fourth class, I was simply disappointed. I suspected no one was even reading my work. I wasn’t certain though, so I thought I would test him. When I rewrote my next report, in the middle of it I added this sentence. “Are you even reading this?”

A week later it came back again with an “A.”

As I thought about that memory I prayed, “Lord, please tell me this prayer means something. That I am not just going through religious or superstitious motions. Lord, do you even hear me?”

No, I didn’t hear any angelic voices. Truth is that I didn’t hear anything. In fact, I soon sent to bed and did not even think about it until just a while ago when I spoke to my family, checking up on them to see how much longer till they arrive.

But this is okay.

Because tomorrow is Thanksgiving. And my family will be here. And at least one more time, I will be surrounded by the people who I love more than my own life.

We don’t always need commentary. Sometimes the circled “A” is more than enough.

I wish you a wonderful Thanksgiving. I pray that you are surrounded by laughter and the voices of everyone you love.

Kevin

"But you, when you pray, go into your room, and when you have shut your door, pray to your Father who is in the secret place; and your Father who sees in secret will reward you openly. And when you pray, do not use vain repetitions as the heathen do. For they think that they will be heard for their many words. Therefore do not be like them. For your Father knows the things you have need of before you ask Him.

Matthew 6:6-8

11/18/09

Last night I was in the process of writing about how quiet things had been with Carli. Explaining that she had some pain and blood in her urine, but otherwise the bleeding had really slowed down and she has been much more “with us” lately. Then the bleeding started. From there it was a long night. I have not seen Carli bleed this much in several weeks. Briefly her blood pressure bottomed out.

It didn’t make sense to me. I had made some decisions, well, come to some conclusions earlier and now that we were up to our elbows in blood, I was really starting to wonder if I had just really missed it with God.

The main conclusion was that despite what I wrote last week about not being able to go forward in ministry without this situation with Carli resolved, that actually the opposite was true. No, I don’t have it worked out yet what God is doing. But I know this, whatever happens next, I will serve and follow. And yes, I will worship and probably preach. If Carli is not healed I will have to process that the best I can. I don’t know what answers I will find. However I do know that when I told the Lord “I surrender all,” I truly meant, “I surrender all.”

And now it appeared that conclusion was being tested.

“Okay Lord, wherever this takes us, we’ll just have to deal with it.”

And from about 6:30pm to 1:30am it was all about trying to stay ahead of the bleeding. Around 11pm one of the surgeon residents came up from where he had been working surgery in OR. I have to tell you about this guy. As you probably know by now, Carli goes into OR every Tuesday and Friday for her wounds to be cleaned and the dressing changed. As the residents switch every month, so does the quality of her wound care. (Not that it is ever “bad” but you know what I mean.) This particular resident surgeon absolutely does the best wound changes. When he does them, they simply don’t leak. I did not realize he was the one doing it until Edith pointed it out to me last night.

Anyway, he comes up, and assist’ with changing her dressings and replacing the drains in the right places. This does not stop the bleeding, but it does help control where the blood goes and helps us keep Carli clean and a bit less miserable.

He was done around 1 or 1:30. Edith and the nurses were finally able to get Carli clean and somewhat settled. I was sitting down in a bit of a dazed, when Edith came to me with a surprising request.

“He would like to pray with us for Carli.”

“Excuse me?” (I have had doctors say they were praying for us, and we have asked certain doctors if we could pray with them, but I have not had a doctor request to pray with us.)

“He wants to pray.”

“Okay. Well. Let’s do it.”

And so, around 1:30am this morning we gathered around Carli’s bed and prayed. As we prayed I smiled to myself “well Lord, isn’t that just like you. Thank you. It is nice knowing you were here the whole time.”

After we prayed he shared testimony of miracles he has seen in his own life and his family, and had these final words. “Never give up hope.”

I haven’t.

Kevin

Then I said, "I will not make mention of Him, Nor speak anymore in His name." But His word was in my heart like a burning fire Shut up in my bones; I was weary of holding it back, And I could not.

Jeremiah 20:9

11/13/09

I guess Carli just didn’t get the message.

It is strange how it happens about every time. When I see nothing and I am not even sure what I am hoping for anymore. Carli will then have a couple of just incredible days. Wednesday night we watched a DVD together (and she actually stayed awake through the whole thing). Thursday, we not only played some Mario, but we almost got through a chapter of school work. Today, despite going to OR for her wound change, we watched another couple of hours or TV, (Friday’s are Monk night). And when I got here this evening, she was insisting she wanted to walk on crutches.

No, she didn’t stand. She would have tried if we let her though. We compromised and assisted her in just sitting  up in her bed for a few minutes. I cannot tell you the last time Carli has set up straight. Really I can’t tell you the last time she has been laying in her bed at more than a thirty degree angle. It has been many months. I guess it has been since we have come to Tampa General.

She has complained of stomach pain, and she has been running some fever, but a lot less bleeding.

Many of you have asked me regarding giving blood in Carli’s name. I will speak to the nurses about this. I haven’t forgotten about you.

Kevin

And as Peter knocked at the door of the gate, a girl named Rhoda came to answer. When she recognized Peter’s voice, because of her gladness she did not open the gate, but ran in and announced that Peter stood before the gate.

Acts 12:13-14

11/10/09 

Another morning with a lot of bleeding and low blood pressure. Again they attempted to chase it in surgery. That and a little factor seven and the bleeding was finally somewhat under control.

We are not moving forward. And though we don’t seem to be going very far backward , when you consider the situation there is simply not very far to go.

She still has moments when she is talkative, and will watch a movie with me. But the moments are further and further apart.

Carli had a dream recently, and in it all her friends and family were lined up to say good-bye.

Not what I want to hear.

I don’t know what God is doing. I just don’t know where he is in this.

A good friend of mine came by yesterday. We were both very involved in the Royal Ranger program in the section six of the Hispanic District. We, “Dos Gringos” have played  a lot of guitar together in church, camping, church outings, and have led many “Spanglish” services. Right now Scott is involved with a church in Brandon and Penn Florida’s Ranger program. He recently led a group of young Royal Rangers in worship at a “Round Up” services. (Basically a local camping event as opposed to a statewide event).

Talking yesterday, I felt a fire, a longing, in my soul.

He spoke of us going out, preaching, playing guitar, worshiping.

But I can’t. Yes, I feel this fire inside. I love to preach. I love to worship. Yet, I have not spoken in over a year. The last time was a special event being held in Carli’s honor.

I can’t right now. Because for me there is only one message worth preaching. It has been the message of my heart since I first felt like I had something to say. It is the message that we can know God. That we can touch him.  That he not only hears prayer, he answers prayer. That God is not just some sweet philosophy to help us face death and pain, but he is alive and well, and through Jesus Christ he invites us to know him, to dwell in him, to actually breath the fragrance of his presence.

It is the message that the veil to the temple has been torn in two, God is in no box or little room, but he is here for all of us.

I have to believe and be able to preach with full conviction, that God is still the God of miracles. That he is still the God of encounter and deliverance.

If this is not true, then I have never accurately read the Word of God.

If this is not true, then I really don’t  know what is true anymore.

If this is not true, then what hope do I have.

For me, this hopeless situation of Carli’s is my “Fleece,” my litmus test.

Kevin

Now it came to pass, as He sat at the table with them, that He took bread, blessed and broke it, and gave it to them. Then their eyes were opened and they knew Him; and He vanished from their sight.

And they said to one another, "Did not our heart burn within us while He talked with us on the road, and while He opened the Scriptures to us?"

Luke 24:30-32

11/7/09

Just Carli and I today. She is quiet, sleeping mostly. Some bleeding but does not appear to be much. Her stomach looks a little distended which concerns me some. Could be blood building up inside.  Blood pressure is running low.

Still have not heard anything regarding how Carli lost her PIC line. IR says they didn’t do it, OR says they didn’t. Everybody says it must have happened when she was being moved, but no one knows anything, and no one documented anything, not even a “hey, we found this long bloody line on the floor. Looks like it might be important. I wonder who it belongs to.”

It is good to know that when my daughter goes to surgery, the professionals are watching out for her.

I guess I should have been more concerned on Tuesday when Carli was being taken down to IR. The signs were already there. While I was waiting in the hall way, the anesthesiologist came out to ask me some questions. His first question was “Has she had any surgeries?”

I was a bit taken back by this question, so I repeated it back to him to make sure I heard the question right, “Has she had any surgeries?”

“Yes.”

That question alone told me this man has not even looked at her chart. Not one page.  In fact, I am not sure he has even looked at her. How do you miss this mess that is now her stomach? Do you think this is an accident?

“Yes, she has had a couple of surgeries. Where do I begin?”

“How about the beginning?”

The problem of course is that Carli has had so many surgeries I have simply lost count. So much of her anatomy has been changed or is now gone, I don’t know where to start.

I began the list: “hole in her stomach, multiple fistulas, stitches everywhere, inside and out, on an almost weekly basis, intestine removed, gall bladder removed, screw placed in right thigh external iliac artery.” I gave up. I simply cannot list everything.

I knew we were in trouble when he asked the last question. “Has she had any problems with her kidneys?”

There it was. He didn’t even know why she was in IR. She was here to get her nephrostomy tube changed. (Another procedure done on a monthly basis.) The very fact that she has this tube tells you there is a problem with her kidneys.

This is the point where if this was the surgeon performing the actual procedure, you would stop all engines and ask to get off the boat.

I could not get into this with this man. The simplest answer was probably bet.

“Nothing new since her last nephrostomy change.”

With that he disappeared back into the room.

And I waited. And waited. I paced outside the door, and I waited some more. After more than an hour, I was very concerned. This is not generally a long procedure, yet I have not heard anything and it does not appear anyone is coming to talk to me.

I called back up to PICU and asked the nurse if she could see what was going on. She was surprised no one had spoken to me, and said she would check and see what was going on.

Finally, from another door down the hall someone came out to walk me to the OR waiting room. They had finished the procedure about an hour ago, and were waiting to take Carli up to OR for her wound change. OR was backed up due to complications on another case.

So I had been sitting outside Carli’s room for over an hour, she had just been waiting there, and no one could just stick their head out the door and let me know what was going on. Were they even watching her? Did they know that Carli has a habit of sudden bleeding, and you can quickly find  her laying in a pool of blood? 

In light of this, I am not surprised that no one from IR or OR can now tell me what happened to Carli and her PIC line. This was not a comedy of errors. It is a comedy of callousness. No one taking the time to just do the right thing. And it angers me.

Kevin

(I don’t have a scripture for today, but I am reminded of the story of Nabal in 1 Sam.25. and Nabal’s callous attitude to David’s simple request.)

 


11/4/09