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

Ethan And Aidan And The Scorpion

Hey everyone, please look out for scorpions in and around your bedroom. They're very dangerous. Scorpions are - wait, I'll just let Ethan and Aidan tell you.

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]

Oh My Soul

The Call performed by Josh

Found out today that my brother-in-law Josh is battling some true problems with his heart. He's in the hospital now, and the experts say he's experienced at least two heart attacks. Josh is 22. He's the guy I talked about here, who opened for Robbie when Robbie Seay sang for Zoe last year.

I don't know about anything. If any of you had your money on "Greg" in "person most likely to have a heart attack," turns out you were wrong. And that's with the two or three hours of sleep and the kids and the kid and the exes and the divorces and the agency pressures. Nope. Wasn't me.

If you had "Greg" in the "person most likely to break into tears spontaneously," then you can probably collect. We're all so fragile. We're all so strong. Zoe's lying in her car seat next to me, oblivious to liver cancers, heart attacks and financial strife. I'm thinking the way Zoe sees it, she's got very few problems in her life, except her mom and dad won't stay awake with her. And she can't figure out why. Zoe of the condition incompatible with life. Fragile Strong Zoe.

My father, the one with the ugliest liver at least one doctor has seen, called on the spiritually hungry at Brown County Mental Health Center this Sunday. He talked to me on the phone tonight, because I don't know what I'd do if I couldn't talk to my dad at times like these. "You can't bear this," he warned, "this isn't for you to bear." Fragile Strong Bat.

Fragile? Not sure. Strong...yes. But slightly frazzled. That's Jen. Packing lunches and trying to match socks while she gets her three hours of sleep and operates as the rock-type at the hospital for the Popes.

And then there's Josh. Kellen was telling me tonight that Josh held Selah as a baby, has been friends - a brother, even - longer than his little brothers.

Robbie sang this at Zoe's concert last year. It is, as far as I know...the only recording of Robbie singing this song. Thank you Robbie.



When clouds veil sun
And disaster comes
Oh, my soul
Oh, my soul
When waters rise
And hope takes flight
Oh, my soul
Oh, my soul
Oh, my soul

Ever faithful
Ever true
You I know
You never let go
You never let go
You never let go
You never let go

When clouds brought rain
And disaster came
Oh, my soul
Oh, my soul
When waters rose
And hope had flown
Oh, my soul
Oh, my soul
Oh, my soul

Oh, my soul
Overflows
Oh, what love, oh, what love
Oh, my soul
Fills hope
Perfect love that never lets go

Oh, what love, oh, what love
Oh, what love, oh, what love
In joy and pain
In sun and rain
You?re the same
Oh, You never let go

Death Panels And The Extra Chromosome

I'm tired of people spouting off that Sarah Palin is employing hyperbole and political vitriol when she uses a term like "death panel." This one is from renowned health care expert Roger Ebert. Yeah. The guy who gave "Curly Sue" three stars.

"Of course the term is inspired by a lie. There are no conceivable plans to form "death panels" or anything like them. The Obama plan, which has some bipartisan support, doesn't seek or desire to get involved in any decisions about who should live and who should die."

Of course.

Jen and I have experienced medical professionals who find our pursuit of care for our daughter to be selfish and not in Zoe's best interest. "She'll always be like that," the pediatrician told Jen. I dare someone to explain how this attitude won't simply be more organized under a single-payer system.

Oh, Greg with his Red State scare tactics and pro-Palin rhetoric. If I'm engaging in factless assertions, then explain this article from the UK. "...Carol said she had the impression that Dimavicius(of the NHS Down Syndrome screening programme) was distinctly unsettled by the figures which showed that an increasing number of women were resisting the pressure to abort babies diagnosed with Down's."

Isolated incident? What about this?

No, Greg and Ms. Palin. There will be no death panels. We're not barbarians like the Brits.

Do you expect me to wait and let someone test this on my daughter just so I can be proven right or wrong?

Batiansila

Batiansila
by Selah

I am a Batiansila and I am very proud.
I love my family.
My family is like a fire no one can stop us from heading toured the goal.
We are big but that is good more people to love and more to praise God.
We all do believe we all do praise we all do sing for him.
no one can stop us from preaching teaching learning telling sharing the love of him.

I AM A BATIANSILA AND I AM PROUD

"A Catastrophic Genetic Disorder"

I don't know why.

I guess I'm figuring God puts much less importance on how people die or how long they're here. It would be very God-like to be more interested in the impact that life made, no matter how many years it was given here.

Or minutes.

The Stulls had 32 minutes with their daughter, Kylie, before she went home.

32 minutes would be about how long Zoe played "airplane" with me last night. Her mama calls her "Pickles."

And yet both have a "catastrophic genetic disorder."

God has chosen Pickles for something else. I am grateful for his mercy.

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.

Zoe and the Airplane

Zoe is 16 and a half months old now, and still shy of 12 pounds. While her body is resisting growing, her brain is unquenchably seeking more.

Tonight while we watched a movie, Zoe begged to be lifted by her chest and tummy like an airplane and then carried around. All the better to learn about height and movement, to see more than her carseat or her swing can allow.

And when Daddy's tired arms put her down, she didn't just cry. She wailed like she was experiencing pain. She wants to go up. So up she went again and again and again.

Anyone who reads any of the old entries of this blog can see how I was quietly keeping myself clear of nights like tonight, when I don't know if I can imagine a life without Zoe. She's a hyperactive, insistent pain in the butt. Like her dad. And she wants what she wants. Like her dad. And maybe she's got a little bit of brawler in her, too, like her dad. And her mom.

Now she's snoring, waiting to again damage my night and much of my morning with her insane sleeping schedule. But I'm beyond glad she's here. I'm expecting her to be.

Brave

Everybody Wants To Go To Heaven (but no one wants to die)
as performed by David Crowder* Band

Everybody wants to go to heaven
But nobody wants to die
Lord, I want to go to heaven
But I don`t want to die
Though I long for the day when I have new birth
Still I love livin` here on earth
Everybody wants to go to heaven
But nobody wants to die

Once upon a time
There lived a man
And his name was Hezekiah
He walked with God both day and night
But he didn`t want to die
He cried, "O Lord, please let me live
Death is close, I know."
Lord smiled down on Hezekiah
Gave him 15 years to go

Jesus lived here on this earth
He knew his Father`s plan
He knew that He must give His life
To save the souls of man
When Judas had betrayed Him
A father heard Him cry
He was brave until His death
But He didn`t want to die

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.

The Least of These

Why God gave me Zoe - because I never would have cried watching this video.

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.