Fly To Jesus

The service sending Zoe home was everything I'd hoped. So many people showing love and care and wonderful music.

During "Shout To The Lord," Jen stood up and asked those around her to, and then everyone did. She told me later she did it because she was so proud of Zoe. So proud of her.

It was a joyful, tearful triumph in the resurrection. We have this hope because we believe everything God's promised us is true.

After the service, I had to kinda walk it off like I had just run a marathon. I was walking around and spending time with each table, and my family learned that my father - too frail to make the memorial - had taken a bad turn. The family headed up. At 8:45 CST, we learned that my Dad had gone home.

There's not much in my life that wasn't influenced by my Dad. I'd be a better person if I could be more like him. He taught me how to tie a tie, to stir batter, to open a book, to pick out fruit, to sign my name.

In each one of these lessons, it wasn't simply a "how-to": it was a thorough step-by-step and reasoning. For my signature, Dad called me into his office and said he'd been looking at my signature on my confirmation papers. It was sloppy. And he was thinking of some options that might be neater and more unique. He showed me some different ways he had thought of signing my name. He was right. I've signed my way that way ever since.

To pick out fruit: You look under fruit, inspecting each one. Often the ones on the top are concealing a flaw. Find the biggest, most beautiful one. "That's for mom," he'd say. Putting her first was the point.

An elite athlete, a world-class artist (his art as a TEEN won national competition), a thoughtful teacher. All were amazing facets of his character. But all paled to his love and devotion to serving the Lord. It was the way he befriended, then witnessed to the breadstore lady. The manager at Cub Foods. The mechanic who the congregation had left behind because of his sin, that's the one Dad went to. It was the way he patiently guided sheep.

It was the way he drew his cartoon-simple images for confirmation. The means of Grace were a funnel. Jesus, in one parable, was an island. God was always depicted by a huge heart.

And now he's home, returned the the heart, the source of all love, reunited with his facilities and all beyond that Heaven crowns, and a laughing, hyper, always-praising girl named Zoe who can't stop talking for all the time the world held her silent.

I'm jealous. I can't wait to see you both.

The Now And The Not Yet

It struck me driving up to Kohl's Department Store yesterday. It was Saturday at 2 pm and there was a really light snow falling. I pulled up behind the store - back by the dumpsters - and saw...

...cars. And people parking their cars and hustling in. I guess it was the contrarian in me that drove around to the front to see if there was any spaces, and there weren't. At all. Between the snow that has fallen and this, the last Saturday before Christmas, the lot was full.

And inside the store was full. I found some 80% off gifts, but when I saw the line for checking out, I just put my stuff down and left.

And that's in West Bend, which, by last count, is suffering from an almost-historic high unemployment rate of 12 percent.

It was the end of a week where we've been putting together a video for the Dohmen Foundation. Watching the footage from Sudan and Haiti - of the abject poverty, of the huge eyes of children who have seen more than any of us would want them to see - absolutely broke my heart. Goodhearted people like the BloodWater Mission, Dohmen Foundation, IMA World Health, MAP International, Vitamin Angels, are trying their hardest to fight a tide of poverty and sickness and pain.

And as I pulled into the parking lot, I was in tears. Not about the five year old Haitian girl infested with intestinal worms, and not because I had to wait in line with others suffering under this economy. But because perhaps the most vibrant life force I've known, the best athlete I've ever seen, the most demanding and exceptional artist, easily the finest worker in the God's field could no longer lift his cup to his mouth. My Dad was being placed under hospice care.

If anyone can describe to me a circumstance as terrible as watching someone who prided himself on the food he consumed, who worked out with fervor reserved for the elite, to be decimated by this world....keep it to yourself. I've had enough of this place.

This morning has me running low on hope, low on peace. Low on faithfulness.

The problem is I'm so mired in this world as if it's anything but a torn and broken place. And I've spent no time thinking about Heaven. And yet, that's where I'm supposed to be focused. And Dad spent His whole life trying to get me and everyone else to focus our gaze there.

The missing solace for me is Heaven. It's a lesson I should have learned looking at that footage this week. Kids living in squalor, undernourished. Living in huts with no clean water...and yet, singing, beautifully, loudly, dancing for their Savior. A gathering of village people holding hands in a circle praying "...in Jesus' name." What possible reason did these children and adults have to believe? To sing? To have joy or hope? They were not receiving joy from their surroundings or current condition.

"Since, then, you have been raised with Christ, set your hearts on things above, where Christ is seated at the right hand of God. Set your minds on things above, not on earthly things." - Colossians 3:1-2

Heaven. When I hug him there, I won't be afraid I'll break him. Where he'll be back to singing loudly, whistling. Heaven, where the artist meets the Artist. Heaven to tell stories of grace, and they'll laugh, and he'll laugh telling them. Heaven, where he'll see the thousands whose lives were changed by God's work through him. Heaven, where he'll experience completion beyond any moment he's had here.

I know what I want. But what I want, I have, and will have again. Just not today.

Another Round

Bat's fighting hard. Weight gain has dropped off and he's struggling to keep food down since Sunday. Please, God, continue to give him days.

Go Bat, Goooooo

Bat has his bad days and his good days. Just recently, he followed up a bad day with a markedly good day. Christa asked him what happened. He told her he had changed his underwear. I think clean underwear therapy is a direction medicine should look into.

...and then there's great days. Yesterday, Bat's doctor said he is cleared to drive. Gentle reader, I know you've heard me explaining Bat's terrible, terrible condition and his "Final Approach": the Pilot has spoken. Landing has been delayed.

Don't Call It A Comeback

Talked to Bat on the phone the other day and...I'll call him and get a recording up here soon. He's doing really well. Put on three pounds. He's joking around and back to being one of the smartest guys in the room.

Kirin says he has his off days. I bet. I might have off weeks. But it's wonderful to hear a voice you never thought you'd hear telling you he loves you. Not a bad October Surprise.

vessel

Maybe we should all stop trying to predict what God is going to do with our life.

Pray - UPDATED 11:20 AM CST

Zoe was admitted to Children's this morning to try and find out what can be done about her terrible sats when she sleeps. Could be tonsils and adenoids removed, could be a tiny tiny cpap mask...could be even more dramatic measures.

Doctors will be scoping Zoe to find out the level of her obstruction and make decisions about a course of action. She for sure will be at Children's overnight.

some better news: HEY HEY HEY....IT'S FAT ZOE! 12 lbs 2 ounces. that's up 7 ounces since last weigh-in.

Sounds like scope won't take place until either tomorrow or Friday.

Dad has lost five pounds since last week.

These are two good people. I've been contemplating what life would be like without either, without one. It's just stifling.

The sun rose today, and both are with us. So, pray.

AE & Zoe Update

Saw my dad this weekend. He had a rough time of things...dealing with nausea, just having trouble performing simple digestive tasks. The big goal is that he eats, gains weight, so that perhaps this newer treatment can be used. All of that is pushed aside if he struggles like he did this weekend.

Pray for Bat. His whole life he's been fighting, and it's hard now sometimes for him to figure who or what to fight against. Maybe everyone. He's a tough guy, and he needs prayers and a hand of gentleness on his soul.

Jen and Zoe went in for Zoe's sleep study, and the initial word is not good. It's likely she'll be admitted tomorrow morning so that the doctors can decide how to deal with Zoe's terrible pulse/ox and co numbers while sleeping.

Imagine This

A letter sent out last Friday:

Dearest Family and Friends,

Today, Friday, August 28, Bat had his first appointment with his Green Bay oncologist, Dr. Winkler, since his discharge from Mayo Clinic. Overall, Dr. Winkler is pleased with Bat's improvement. His liver function test (bilirubin) has improved and is now in the normal range. The liver enzymes remain elevated, but they have been for quite some time, and are expected to remain so. This is no surprise and to be expected. The protein in his blood has improved, but is still slightly low. This also indicates improved liver function as well as definitely better nutrition.

Dr. Winkler examined Bat's legs, and he felt that the amount of swelling that is present is acceptable. The swelling is due to a combination of factors, which include compromised liver blood flow due to the the tumor, the aortic stenosis, and the still mildly reduced blood protein levels. He did not feel that the swelling was of any major concern unless it would dramatically increase, in which case a mild water pill (diuretic) would be helpful as needed. Continued walking and exercise will also help minimize the swelling.

Bat was having very mild pain today, but he had not taken any Oxycontin in 3 days. Dr. Winkler explained that the twice daily use of the 12 hour release pain medication (oxycontin) was necessary for satisfactory long term pain control. He stressed that Bat was on a very low dose of oxycontin. Dr. Winkler instructed Bat to resume taking the oxycontin on a regular basis, and to use the oxycodone only on an as needed basis if he had episodes of increased pain.

He examined Bat's gout-afflicted toe, and felt that it was responding nicely to the medication. Hopefully it will continue to improve, but if he has another flare up, then Bat should contact Dr. Winkler for another prescription.

Bat has been taking lactulose to reduce the amount of ammonia in the bloodstream, as well as to prevent constipation, with its accompanying nausea and/or vomiting. This has been working well, but with the improvements in liver function, Dr. Winkler wishes Bat to continue on the lactulose for only one more week. If needed, it can always be restarted in the future.

All of this, of course, was good news, but the best news was yet to come. Dr. Winkler feels that if Bat's general condition continues to improve, there is a fairly new drug which could be tried to slow the tumor growth. Unlike most conventional chemotherapy, this drug is given as a pill, and the side effects are usually quite mild, with diarrhea being the most common side effect. He does plan on discussing this option with Dr. Pitot, and hopefully it may be started in 2-3 weeks. Bat has a follow up appointment with Dr. Winkler in 2 weeks.

The question was raised whether a trip would be possible in the near future, and Dr. Winkler again felt that if Bat continued to gain strength, and to exercise, that traveling would be a very likely possiblilty following his next visit in 2 weeks.

All in all, a very upbeat and positive visit to the doctor. At this point, it certainly seems that Dr. Winkler is anticipating that Bat will have quality time in the future. We can only pray and hope that he is correct.

Once again, thanks for all your prayers and good wishes.

Gary and Fran

Roller Coasters and Toasting

Big Friday came and is being celebrated in every corner of the Bat Universe.

Big Friday saw Josh, after being diagnosed with coronary artery vasospasm, receive his orders - take around five meds, no more caffiene, better diet - and was released.

Big Friday saw Zoe riding in style in her new stroller - worth more than either of the cars in our driveway - that lets her ride in comfort, support...and lets her see. Thank you, Humana Healthcare.

But the biggest of Fridays goes to....

Bat, who went to see Dr. Winkler, his long-time oncologist. Dr. Winkler was not present while Bat spent his time at the Hospital That Will Not Be Named. Honestly guys...we all thought this was the visit where Dr. Winkler used terms like "being brave" and "hanging on."

Instead, Dr. Winkler said he kept looking and looking for some drug that might help. As in, not help Dad die with dignity, but as in, help him live.

Imagine that.

And he found something. He thinks he found something.

While Doc Winkler was acting like a doctor, Bat was acting like...well, Bat. The physical therapist told him to get up every hour and move, and so he moved. Around the kitchen island. Down the driveway. Working out with a piece of equipment from Val Centanni down South.

And eating. Three pretty squares, and some snacks.

So, Dr. Winkler has announced that the Sutent will begin in the next few weeks.

Look, all of this medical stuff is a roller coaster. We're up, and it very likely could go down again. But you know what you do at the top of those big hills? You point heavenward just like we did at the deepest valley.

So we Bats raise our hands in praise of a God who saw fit to give us a Big Friday.

And, we Bats raise a glass:
to rollercoasters, Sutent, hope, Heaven, Dr. Winkler and Rocky Balboa.

[scrippet]

Ext. NY SIDEWALK - NIGHT

ROCKY

The world ain’t all sunshine and rainbows.
Life will beat you to your knees and keep you there permanently if you let it. You, me or nobody is gonna hit as hard as life.
But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward. How much can you take and keep moving forward? That’s how winning is done!

[/scrippet]

Final Approach

My Dad was an air traffic controller in the Air Force. I'm not sure if the position made him observant, or him being observant made him an air traffic controller, but Dad would look out the windows of the car and notice things.

Notice caterpillars crawling across the road. Hawks soaring high above. An old farmer hunched - almost slumped over the wheel of a tractor.

When we lived in New Orleans, I rode with Dad about as much as I could. To the store or fishing or just about anywhere. When we drove by the airport on the way to New Orleans East, Dad would point out which planes were on the tarmac and describe the processes he'd go through to guide a plane on to the ground.

"We're on final approach," Dad would say, as if he was speaking into the microphone. Those words meant something to both the pilot and the tower. Gear down. Flaps. Bearings. Horizon. Radar.

Dad used it with me a bunch. He told me at the end of my senior year in high school that I was on final approach. Sometimes he'd describe the tail end of a long vacation trek as final approach.

So...I think he'd like me telling you he's on final approach.

The stent was removed and it wasn't the magic fix. His physician knelt next to his bed and stared into his eyes, held his hand, and told Dad he wished he could do more.

Final approach and it turns out my last walk with him - down the walk to a fishing boat this summer - might be my last without a walker, maybe my last outside. Final approach and the thing he worked so hard to refine and stay tuned - his body - is failing him. Fighting him.

I didn't see it coming, not this fast, not this way. And it turns out the final preparations weren't physical at all. It is a legacy of faith and a heart for ministry - he witnessed to his nurse just yesterday - it's strength in something more than a calcified heart valve or a tumor-ridden liver.

This world will break your heart. If it hasn't, it will. This world will break your heart and I hope that you're as prepared for final approach as my Dad is.

AE Update

As of yesterday:

Yesterday, Mon. August 10, Bat was transferred to Mayo Clinic at the request of the family, in order to have Bat evaluated by his long term primary oncologist, Dr. Pitot. A

fter a somewhat bumpy 5 hour ambulance ride, Bat arrived safely and was admitted in the early evening. This morning additional lab tests were obtained, and the oncology doctors reviewed Bat's records from his recent hospitalization in Green Bay.

This afternoon, Dr. Pitot reviewed all the records, tests, and he examined Bat. After consulting with another staff oncologist, Dr. Pitot had a lengthy conference with family and friends who were present.

Dr. Pitot feels that Bat's liver is very diseased, and is not functioning as well as it should. There is a very small possibility that the previously placed stent in the liver has become partially or completely blocked, and that this may be causing some of the decrease in liver function.

In order to evaluate this, the gastroenterology doctors will endoscopically examine the stent in order to determine if it needs to be removed or replaced. This will probably take place on Wed or Thurs, although no definite time was scheduled as of Tues night.

It is certainly possible that slowly increasing amounts of tumor are causing decreased ability for the liver to function. Because of the decreased liver function, further attempts at embolization, or use of chemotherapy, are not possible at this time.

Bat's nutritional status remains poor, but because of the aortic stenosis, IV nutritional therapy is not recommended because of the load it would place on the heart. There is also concern that the liver would not be able to process IV nutrition, and this could actually make the situation worse. For the present time, attempts will be made to increase his oral nutrition, including the use of appetite stimulating medication.

Tonight, Bat's condition remains stable, and the focus of therapy is to keep him comfortable with his pain relatively well controlled.

As usual the care he is receiving here at Mayo is exceptional. We thank God for his continued good care, and thank you all for your prayers and support.

Big, Big Day

After a difficult transport that caused a good amount of discomfort, Bat will undergo many tests today at Mayo. They've been upfront with him and asked him if he has his things in order, if he's made arrangements, about a DNR. It's SOP for people at his stage of life, but it's also a legitimate indication of the stark moment he's at.

The test will help Mayo determine if there's anything that can be done, and what can be done.

Dad had a restless night filled with prayer. He's asked God for more time. God will answer this prayer soon.

Return To Mayo

Yesterday I was summoned by my sister Kirin to the hospital. She had been told that AE's organs were failing. We hustled up there.

Turns out that only some of the professionals at the hospital that will not be named believed that the organs were failing. Others had no opinion on that question at all. Others didn't answer the question.

When Kirin asked about a specific course of action for Dad, she was told that absolutely, under no circumstances, does the hospital who will not be named undergo that specific course of action, because of Medicaid.

Yesterday, a nephrologist - who will not be named either - spoke to our family with care, honesty, and professionalism. He gave us a frank assessment of Dad's condition ("that's the ugliest liver I think I've ever seen"), including some recommendations. One was to get dad to Mayo.

He recommended and ordered that very course of action which we were refused the day before. It was implemented. It resulted in a marked change in Dad's alertness and vitals.

Were it not for Kirin's vigilance, with Renee's help, who knows what would have happened at the hospital which will not be named. Also playing a huge sacrificial part in their lives and summer are Kirin's two kids, Alanna and Caleb, who have been waiting while mom pours out her heart and mind and spirit in loving service to Bat.

We don't know if Mayo Clinic is going to have any better assurances for Dad and his days here. At some point today, he'll be transported across the state to Rochester and Mayo and doctors who have been working with Bat for years.

Our hope is to get a care plan backed by professionalism, a little hope, honesty and transparency. And that Dad and his ugly liver that could get out of the hospital which will remain not named.

As a tribute, I've included Kool Kat Kirin's voice message to herself.

First Person

Went home today and visited Bat and Christa. Dad was gone doing a service at Brown County Mental Health Center and then stayed after to call on some of the people there.

Heidi, Kirin, Renee and Jim, Erin, Martina were all there, kids in tow.

Dad came in and listened and talked. One comment he said emphatically was that by the time information is getting to the second and third person, it seems like we're discussing the size of his casket. And sometimes, this blog is the second and third person.

For example, on Thursday, two sisters called me to tell me Dad was hospitalized. None told me that he was admitted so that he could be hydrated and then released.

I told mom and dad that short of giving them the blog username and password - a meaningless bunch of information since they'd need weeks to "get" what to do on blogger - they should get on Facebook.

So we went back over Facebook and what they'll need to update. I even reviewed that the computer is a laptop (thanks Jimmy and Jan) and they can actually move it off that desk.

So...social media solving problems? We'll see. But Facebook is updated today. First person.

AE Update

Bat was admitted to St. Vincent's hospital yesterday after experiencing over a week of weakness and nausea. Andreas and Jill had just been up to see Dad and had reported his struggles.

I spoke via email to Bat and Christa's friends, Fran and Dr. Gary Miller, and asked them frankly what next steps were. Unfortunately, I have some experience with a potentially terminal person in the very-much-alive-all-through-the-night Zoe.

I told Fran there are two paths.

1. tell me that there is nothing more to do.

or

2. Then tell us what the symptoms of those treatments are so we can react when we observe symptoms that do not agree
-then recommend a nutritionist for dad
-give mom explicit instructions on what to do over time.

Fran said that they were going with number 2. "Your dad isn't ready to throw in the towel by any means, nor is your mother."

I know all of us kids are trying to wrap our brains and our faith around this uncomfortably painful and real situation. I see my sisters' laments on Facebook. I've written posts here that I haven't posted, mostly because they sound like eulogies and selfish pain. This isn't the time for either.

What will happen today, as will happen tomorrow, is God will hold my Dad to His breast and breathe life into him. And whether he's here among us, in pain, or in Heaven, not in pain, is up to God. And if I trust God, God will decide what is best and right for Bat. And Zoe. And me.

So, today, we fight. Bat, Zoe, and me.

Pray For Bat

Bat's in the fight of his life. He's having trouble gaining weight and he's just fighting all day.

Friends of mine, lift up this man of God in prayer. This world is a better place because he's with us today.

AE UPDATE

Phase 1 - AE feels nautious, which is GOOD. The worse he feels, the more this procedure is working. The doctor found three vessels that have a possibility of being blocked. So he's going to going to block one vessel at a time. One was blocked. AE is on his back...

and maybe they'll try doing Phase 2, the second vessel.

Battle Begins

AE is getting a massage to relax him before he undergoes round one of the painful, sickening healing called embolization. ,

Christa and Kirin are there at Mayo, along with the Millers...all waiting for the procedure to begin.

All I can pray is that AE does what he taught me: fight. Set your jaw and draw your line and fight.

He fights and we pray. Pray hard.

AE's Cancer Update

From an email sent to a huge list of people, so I feel okay sharing with you all:



Dear Loved Ones,

As most of you are aware, Bat had a follow-up appointment at Mayo Clinic on Monday, June 22nd. In the morning, there were the usual blood tests followed by an MRI scan. Late in the afternoon, Bat and Christa saw Dr. Pitot, who reviewed the tests and MRI scan. The blood tests were generally good and revealed no appreciable changes. The MRI scan was compared to the MRI scan taken at Mayo Clinic 6 months ago, and the MRI scan taken at St. Vincent Hospital in Green Bay approximately 5 weeks ago. The scan showed no change from 1 month ago, but there has been definite progression of the tumor in the liver compared to 6 months ago.

At this point, it appears that the monthly injections Bat has been receiving are no longer sufficiently effective at slowing the tumor growth. Dr. Pitot feels that Bat is definitely a candidate for further treatment, and has explained 2 possible treatment options.

The first option would be to re-embolize the liver in an attempt to cut off the blood supply to the tumor and thereby temporarily stop or slow it's growth. It would require 2 or possibly 3 trips to Mayo Clinic, each spaced about a month apart, and would require hospitalization for 2 to 4 days, maybe slightly longer, at each session. Bat had this done 7 years ago and had good results. Dr. Pitot did emphasize that repeat embolizations are usually not as effective as the first embolizations, but he felt it was definitely worth considering. He believed that the risk of serious complications, such as liver or renal failure, to be maybe 5 to 10 percent, which he thought to be acceptable in view of the serious nature of Bat's disease.

The second therapeutic option would be to start chemotherapy, which could be administered here in Green Bay by the local oncologist, Dr. Winkler, in collaboration with Dr. Pitot. This would require intravenous administration of probably 1 or 2 chemotherapeutic drugs on 5 successive days as an outpatient, followed by a 3 to 6 week rest period. The cycle would then be repeated for as long as the regimen was effective. Bat would probably experience the usual side effects such as nausea, vomiting, hair loss, loss of appetite, sores in the mouth, and diarrhea, and these would occur following every successive round of drug administration. Dr. Pitot believed that the risk of serious side effects requiring stopping chemotherapy completely would again be approximately 5 to 10 percent.

Dr. Pitot was unaware of any investigational drugs or therapeutic trials for which Bat would qualify.

Overall, Dr. Pitot believes that either therapeutic option would have the same probable effectiveness in controlling the growth of the tumor. Bat and Christa were urged to consider the options, and make a decision as quickly as possible.

After much prayer, and with God’s guidance, Bat and Christa have decided to proceed with re-embolization as soon as possible. Hopefully, they will have a date scheduled for the procedure by the end of tomorrow.

If anyone has a question about the medical and/or technical aspects of the above information, please feel free to email Gary Miller at: rocketmillers@new.rr.com..

Please pray for Bat .