Zoe Means Life At St. Paul's

8:30 came early Sunday morning. Zoe had finally fallen asleep at 7. I made some coffee and looked back in the room at the snoring mom and bean. Maybe I'll just get the boys ready and go with the big kids.

Then I heard Jen staggering out of the bedroom, her MOMBRAIN 2000 whirring into imperfect motion. She began giving orders about people's clothes and shoes and who should get some bottles...

We made it to church at 9:33, making the tail end of one of the pre-service anthems. Pastor Navurskis tapped me on the shoulder. "Can I talk to you a minute?," he asked, "the Spirit is moving me to ask you something..."

I followed him out and he asked me if I would bring Zoe up during the sermon. It was Life Sunday, he explained, and he had seen Zoe's big blues catch his eyes as he peeked into the sanctuary.

Of course. If I can tell anyone about Zoe and Trisomy 18 and Life...let me at 'em. We ended up sharing a bit of a story at the 9:30, the 10:45 and the 7 on Monday night.

1 Corinthians 2:9

9However, as it is written:
"No eye has seen,
no ear has heard,
no mind has conceived
what God has prepared for those who love him"

Waterlimon

[scrippet]
INT. PICK N' SAVE PRODUCE SECTION - DAY

GREG is pushing a CART with ETHAN scrunched in the back. AIDAN is seated in the kiddie seat in the front.

AIDAN
Dad, can we get some waterlimon?

ETHAN
MMMM Waterlimon!

GREG
I don't know boys. Maybe not this time.

AIDAN
(pathetically)
Ooooooh.

GREG
Maybe when we get food for July 4th. With the parade. Watermelon's aren't on sale yet.

AIDAN
I love Waterlimon. Have you had waterlimon?
(before GREG can respond)
You take water...

ETHAN
...and then you cut up the limons into pieces...

AIDAN
..and put them inna water. With sugar.
(smacks lips)
YUM YUM!

ETHAN
MMMMM!

GREG
Oooh. Lemonade?

AIDAN
No. Waterlimon.

GREG shakes his head, picks up two lemons and tosses them at ETHAN.

AIDAN
YUM YUM!

ETHAN
Yay!


FADE OUT

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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.

Thank You DCB

Been waiting for this song and I didn't know it. Listen.

How He Loves
by David Crowder Band

He is jealous for me,
Loves like a hurricane, I am a tree,
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are,
And how great Your affections are for me.

And oh, how He loves us so,
Oh how He loves us,
How He loves us all

Yeah, He loves us,
Whoa! how He loves us,
Whoa! how He loves.

We are His portion and He is our prize,
Drawn to redemption by the grace in His eyes,
If grace is an ocean, we’re all sinking.
So Heaven meets earth like a sloppy wet kiss,
And my heart turns violently inside of my chest,
I don’t have time to maintain these regrets,
When I think about, the way…

He loves us,
Whoa! how He loves us,
Oh how He loves.
Yeah, He loves us,
Whoa! how He loves us,
Whoa! how He loves.

Well, I thought about You the day Stephen died,
And You met me between my breaking.
I know that I still love You, God, despite the agony.
...They want to tell me You're cruel,
But if Stephen could sing, he'd say it's not true, cause...

Cause He loves us,
Whoa! how He loves us.
Whoa! how He loves us.
Whoa! how He loves.
Yeah, He loves us,

Smile

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 .

EEG Says...

Doctor Kovnar says he's thinking Zoe isn't experiencing seizures. Jen had noticed that her "episodes" happen only when she's asleep, and his review of the EEG doesn't seem to indicate seizures.

Things he did notice:

Zoe doesn't have too many stages of sleep. She really goes from drowsy to deep sleep.

Zoe may be affected by obstructive apnea.

Zoe may be affected by night terrors, which do accompany the lack of stages of sleep.

While her fontanel still exists, there is evidence of it bridging.

Here's what he didn't notice: Anything containing the words "incompatible with life."

I am blessed, and you are witnesses to this blessing. I am triumphant, and you are witnesses to it. My daughter turned 15 months old yesterday. And the doctor and you and I didn't even notice it.

Big Day: Pray

Zoe's in right now receiving an EEG. She had another "episode" that resembles a seizure a few weeks ago and the current opinion is it's related to apnea.

The doctor seeing Zoe is the same doctor who met with Selah, all those days ago. Back when Selah's health trials were the worst thing that had ever happened to me as a Dad.

I'm praying for good news there, hoping that God will give us insight into Zoe's health as we learn about her and her condition.

I'm also praying for Josh, Jen's brother, who is trying out for American Idol. My pretty close to objective assessment, having seen his gifts, is that he's a shoo-in for California.

I re-refer you to the devotion I found and mentioned in yesterday's post. My worst-handled duty as a Christian has been acting as an intercessor for those around me. Let's pray for others, watch with them, lift them up.

**Updates: Zoe was very upset with the whole EEG process, but is through. We'll talk to the doctor about results tomorrow.

Josh sang twice today and they lauded his great voice and look, and then told him he's not what they're after this year.

What Dads Do

Over the last day or two, I've been pondering what to write in this space. The more I thought of fathers, the more I thought of my Dad, people like my friend Ted. And our Father God.

But I wasn't sure what the quality is we all share. Pride, for sure. God sending down a dove and a loud voice when His son was baptized. I know this past basketball season I celebrated my son's play at the end of the game to the point that people thought it was a bit much. God, could you have just done the voice? Did you need to send the dove, too?

Maybe it's being a fool. That, I've done plenty. I know people have seen me at the aforementioned basketball games, jawing at refs and overall being a blithering fool. I know you can catch me most nights or days talking in voices, making up stories, singing songs that are foolish - but they're for my kids. It's what you do. Sometimes you're a monster, sometimes you're a tickle monster, sometimes you're a storyteller. Sometimes you're an opera singer. It's for the kids.

Trust me, God knows this too. Being a fool for His children. Showing love or mercy at all to a failure like me. Sending an idyllic morning and a snoring daughter who is incompatible with life my way on Father's Day is a foolish show of love for an undeserving child.

Then I read this devotion, which helped me focus on the true fathering trait. It's reckless care for those given for you. How'd you like to be Adam, first father, father of the first murderer? Do you think Adam lifted his son up in prayer recklessly? How'd you like to be God or my father, looking at my jagged life?

It's not our job to lay claim to the successes or failures of our children. It's our job to stretch ourselves out for them as shepherds and advocates, to get less sleep and to have no money, to weep for their losses and be fools for them in their success, to sometimes be the opera singer and sometimes the coach. Recklessly.

Sometimes, They're Wrong Part III

Mom and Dad took Grace off life support and held her tightly, one last time. They took the picture above. Then...

FAT CAMP

Bat and Zoe continue to work at gaining weight. Right now, Bat has taken an early lead, adding a pound. Zoe added 7 ounces in a month, up to 11 pounds, 11 ounces.

A Scene

[scrippet]

FADE IN ON

Int. AE Batiansila House - Late Afternoon.

Almost all 32 grandchildren and 9 of ten kids are in the house. DREW is asleep on a sofa. ALEXIS is snoozing on the floor. Every one of the kids is in the kitchen/breakfast room. MARTINA hands out little chocolate cups of licquor for a toast. A hush falls over the room.

RENEE
I'd like to toast Daddy, and just pray that God takes him - takes him and just -

(HEIDI turns to GREG. Did she just ask God to take him?)

-on wings of an eagle. And just lift him up with this retirement!

HEIDI
(to Greg)
When we pour the champagne, think you could say some other kind of toast?

GREG
I thought that one was really good. Think we could pray that God kind of puts a hold on taking him?

FADE OUT

[/scrippet]