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Jonas's Updates
Monday, August 15
Posted 8 hours agoJonas was admitted to Children's Mercy last night with a 102° fever and extreme lethargy. After having bloodwork drawn he was determined to be neutrapenic and was almost immediately given a blood transfusion. He is restng comfortably and is being given antibiotics for an infection around his gtube (the tube on his stomach where he gets his formula feeding). Apparently, all the germs in your gut like to get out of control when your battle systems go down.
It looks like Texas wil be put on hold until after this next round of chemo.
We are in a holding pattern for now.Send a message
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[Unable to display image]About Jonas
Jonas has been suffering from intense facial and headache pain
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St. John's Group Email Monday, August 15, 2011
Many of our Daily Devotion readers are acquainted with the name, Mick Onnen, president of the International Lutheran Laymen's League and that organization's public persona, Lutheran Hour Ministries. Since his presidency, Mick has sent out a weekly prayer list to our organization's leaders. Recently that list was accompanied by the devotion, which follows. Presented with only the smallest of changes, I share it because of its value and because I wanted you to know the kind of leaders our organization has.
Pastor Ken Klaus
Last week, my extended family vacationed in the Colorado Rockies and we enjoyed a new experience.
We older ones in the crowd rafted a stretch of the Colorado River which was somewhat swollen from the heavy snowmelt.
It was a bit turbulent. Even so, for a man who originates from a state appropriately named "Flat Waters" by the Native Americans (Nebraska), it was fun and exhilarating.
Our kids, on the other hand, rafted the swollen and very challenging Clear Creek, west of Denver. It is a stream with fast-moving white water, treacherous rocks and whirlpools. I offered a lot of prayers that day -- not for our group -- but for the kids.
Although guides are present on the rafts trips, swollen rivers can be unpredictable and dangerous. I was glad when we got the call that the kids had finished the ride and were on their way home.
It wasn't until they arrived at our cabin that we learned my daughter-in-law had twice been thrown out of the raft ... along with the guide. (They told me the guide had only been dunked one time in the last five years). By God's grace, they had been plucked out of the water before a dangerous whirlpool engulfed them or they were smacked against a rock.
My son's comment after the ride was "Now I can say that I've done it, but I don't have a desire to do it again."
For that comment I said another prayer of thanks!
Thinking upon the adventure, I've concluded mountain streams can pack a lot of power as they tumble and roar down the mountainside. Those who have experienced the force of floodwaters can attest to the strength of water.
But as powerful as is a mighty river, the LORD on high is mightier.
It is a comfort to know that at all times, even when the waters surround and engulf us (or the problems of the world weigh heavy upon us), the LORD is in control for He is mightier than all the force of the sea. Truly, "... God is our refuge and strength, an ever-present help in trouble" (Psalm 46:1b).
For that, I say a little prayer of thanks.
THE PRAYER: Dear Lord, I give thanks for Your power and strength. For bringing us through dangerous waters, for using that power in the Person of Your Son to defeat sin, death, and devil and win my salvation, I praise Your Name. In Jesus' Name I praise You. Amen.
_____________________________________________________________________________________________________________
YESTERDAY'S QUIZ: How long was Zedekiah king? 11 years (Is Doug Herzog ever going to be dethroned?
Sun- Bible study 8am; worship 9am; Bible study 10:30; voters meeting 11:30
________________________________________________________________________________________________
NEWS:
The ninth annual T-3 Men's Retreat is set for Friday-Sunday, September 23-25, 2011. This promises to be another great experience for the men of St John's and other Lutheran congregations in the St. Charles area. In fact, men from all over the metro area have joined this special time in the past. Men 18 years of age or older are eligible and they need not be Lutheran to attend. The retreat will be held at Mark Twain State Park at the Si Coburn Group Camp. This is a beautiful setting for a weekend of adventure and growth. The theme of this year's retreat is "Respectable Sins" and the study times during the retreat will be spent exploring the areas of our lives where we have come to accept less than God might want from us.
The retreat will feature great food and a lot of activities A scramble golf tournament, fishing tournament, trap and skeet shooting competition, and euchre tournament all take place on Saturday morning. If none of these interest you, you may choose to spend time reading, hiking , biking, site seeing, or napping. Prizes are awarded to tournament winners at dinner on Saturday evening. Campfires on Friday and Saturday nights provide the opportunity to get to know others better under the stars. Music is a big part of the camp experience and you will enjoy hearing and singing familiar songs with the 100+ men who typically attend. The culminating worship service on Sunday morning is a special time of praising God for all His gifts to us and a great way to prepare us to return to our homes and lives.
The cost of the retreat is only $42 and this includes meals and a commemorative tee-shirt. Attendees have the option of staying in group cabins or tent camping on the grounds at no additional charge. You can even arrange to stay in a local motel near the camp at reduced rates if you like.
A brochure with all information and a registration form will be available soon in the narthex. You can also register online at www.t3mensretreat.org using PayPal. It is really easy and you can see pictures of the camp and facilities there, too.
This is the year for you to go to the T-3 (trap-tackle-tees) Retreat. Sign up, meet new friends, bring old friends, and join in the fun of growing your faith. For more information, contact Don Hugo at Zion –636 441-7425 ext 246 or home 636 441-9954.
20- Mauch
21- Panhorst
27-
28- Sweet
September
3- mckenzie
4- Panhorst
10-
11- Schaumberg
17-
18- Heitgerd
24- Mauch
25- mckenzie
October
1- mckenzie
2- Panhorst
8-
9- Winn
15-
16- Heitgerd
22- mckenzie
23- Schaumberg
29- mckenzie
30-
November
5- mckenzie
6-PEPER
12-
13-PEPER
19-
20-PEPER
23- (Thanksgiving Eve) mckenzie
24- (Thanksgiving Day)
26-
27-
For PAUL TOEDEBUSCH who will have a procedure tomorrow to take biopsies because of abnormal test results a couple weeks ago.
OUR CHURCH as we continue the CARE PROCESS.
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St. John's Group Email Prayer request for Paul Toedebusch
Mary Sue Toedebusch
Realtor Consultant
Century 21 Luetkenhaus
(636)359-0053 - Cell
(636) 980-2121 Office
St. John's Group Email update on Jonas (Don Nolte's grandson)
Peace to all!
Updates
I have to first mention that I'm sorry we didn't journal while we were there. I need a computer or laptop to make entries and we did not take one with us. We had access somewhere at the hotel, but we did not have time to juggle that. I have so much to record that it may take me more than one entry to get it all in!
All in all, it was a very good trip. Thanks again to our neighbors Karen and Bill Atkins who made our flights possible! Every detail about flying -ticketing, boarding, attendants, transporting, went without a hitch. Continental Airlines made flying with a Cancer patient very accomodating. We would highly recommend them. On the way down to Houson on Wednesday, Jonas experience a great deal of stomach upset and threw up at the airport, on the plane and in our taxi about five six times. Upon arriving at the hotel, we realized (with all the medical needs we had to pack) we had forgotten the feeding pump! Kind of crucial to feeding the guy at this point. His stomach was so upset, even painful, with nothing in it, that he was throwing up all the medicine we were giving him. He tried to eat, but couldn't keep anything down. Neither the hospital in Houston nor our medical contacts here in KC were helpful at all about getting us replacement pump! Nothing for loan, lease, or replacement. In fact, they all seemed oblivious about what company we could find to help us attend to that situation. I was beside myself. Joel an all over the hospital looking for the right department to handle our situation. Jonas was tired and weak and way past due for all his pain meds... and had thrown up all the ones he had had only hours before. The only recommendation our medical team at Children's Mercy could offer was to take him to the Emergency Room because, at this point, he was likely to be neutrapenic. I checked him and he had no fever, but we had no other options. We called Dr. Hughes's office to tell him that we were going to the ER there at MD Anderson and got some surprise news. Two nights a month, he works the chemo division of the ER and he was there at this very moment! So we packed up and went right over.
Before ever meeting the man, we had heard very little about him and knew mostly only what we had read. We knew that he had given lectures here at Children's Mercy several times and had met a nurse who had done some training under him in Texas. The only insight we had to him is that he was a scientific specialist and a teaching doctor, which as I understand, means he does his own experimenting and publishes in medical journals. We had also heard that he was great with kids and kind of on the chatty side. Well. Have you seen the movie Patch Adams? He actually kind of resembles Robin Williams and is that kind of a doctor...only not as goofy or unprofessional. He is the first doctor that talked DIRECTLY to Jonas. If we interupted, he would answer us by talking to Jonas. Don't get me wrong, he talked to us too, but we were used to being at a Children's Hospital where he was treated like a child. (Not that that is bad! We were and are very pleased with all our experience with Children's Mercy.) He calmed Jonas in a way I had not yet seen, and he is now Jonas' most favorite doctor. It didn't start out like that though.
When we arrived at the hospital, they checked him in and put him in a room. Dr. Hughes introduced himself and learned that we were behind on getting him his pain meds. One of them is a shot I have to give Jonas in his leg every evening. Upon hearing this, he put some numbing cream on Jonas' leg. (it takes about 20-30 minutes to work) After about 5 minutes, he said, "okay, let's just do this." Jonas about freaked out and shot daggers from his eyes at me, pleading me to stop him. I asked the doctor to wait, but he smiled and told Jonas, "Its really not that big of a deal" laughing it off. He had Jonas look at the ceiling and count backwards from 100 by 7's. When it was over, Jonas had toughened up. It set the tone for the whole ER visit.
From about 11pm we spent 5 hours there getting fluids and meds in him, and having blood drawn for labs. The two of them became quick friends talking about all matter of things from cancer to sports to science and other teen boy things moms aren't privy to. He talked to us about adding some other medications regimen that would help Jonas put some weight on. (We were back down to 87 pounds after this chemo. So he NEEDs it!) Around 4am we were sent back to our hospital room. He was also kind enough to push back our 8am office visit to 10:30. So we quickly caught up on sleep.
He was there the next morning, bright-eyed and bushy-tailed, freshly dressed and as jovial as ever. And after visiting the office, we were so very grateful for our time with him in the ER. Our office visit was useful and thourough, but also sandwiched in between all the other patients waiting in line to see him. Had we not spent the evening conversing with him, we would not have gotten to know him so well or been able to ask all the questions we wanted to ask.
He sent us with medical students to see a variety of doctors from eye specialist to head and neck surgeons. Our day was so full the never did get to sit down for a meal, but ate our meals in waiting rooms. To our suprise, Jonas drank Ensure instead of getting it through his feeding tube! From the early morning on, Jonas had new life in him. He volunteered, most of the time, to walk or push the wheelchair rather than riding in it. (Thank you to Susan Murphy who is letting us borrow her wheelchair. A perfect fit!) I could tell he was taking a new vested interest in his condition and was doing most of the talking with ALL his doctors now. That alone is giving him confidence, spunk and a more positive outlook on cancer and his treatment. We could not be happier!
The surgical team decided that although the opthamologist recognizes that there is enough information going into and coming out of his eye and might be reversed, the tumor has ahold of it in a very bad postion futher back on the optic nerve. It is not in place were they can safely operate to release it. We were hoping something could be done to give him his vision back sooner than later, but that is not to be. Jonas seemed to take that information in stride. They were very realistic with him that while they hope to get it back while killing the tumor, there is a real possibility that it may never come back. Even if it does, it may be completely destroyed by the radiation he will get. Not what he wanted to hear. For a kid that loves to play baseball and wants to learn how to fly a plane - that stinks! (If you have ever seen the movie Little Miss Sunshine - you know what kind of reaction I was ready for.) He sucked it up and stayed positive.
That night he had his first MRI with contrast since his cancer was first identified. They wanted to check images side-by-side with his original MRI to see if the tumor has shrunk. (shrank?, shrunk? has shranken? lol. I never could figure that one out = ) Anyway, we found out Friday morning that it HAS! Yay!!!
We visitied with the Proton Therapy specialists Friday morning who showed us the head to head comparison. The tumor has dimished in some areas. Not so much in others. They told us they had aleady confered with Dr. Hughes and want to begin Proton therapy asap. This post is getting really long so I will divulge what all that means tomorrow.
I will end with saying that we finished out trip with our first sit down meal of the entire stay at the hotel restaurant, which was pricey and not worth the expense. Lesson learned. We then hopped into a taxi and had a quick and very uneventful flight back home to Kansas City.
It was good to be home. Brette and Blaire left for a float trip with Amber Dahm and the James family on Friday morning so they weren't here to greet up. We hear they are having a lovely time and that Blaire has latched on to Jonas' baseball coach, Shawn James. How sweet. It's only fitting since Jonas thinks the world of him, too. = ) Lovin' that.
More soon...........
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I hope that you find some PEACE in every day.
Love Aunt Stephanie
About Jonas
for approximately two months. His...
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St. John's Group Email Prayer request: from Christine Winn
Christy
St. John's Group Email Thursday, August 11, 2011
If you ever want to see some fur fly, all you need to do is say, "Our state fair has the biggest state fair in the country."
But size isn't the only part of their state fair that people like to brag about.
They'll fight about who has the best state fair, who has the most fun state fair, who has the most educational state fair and, of course, there is always who has the most interesting, fattening, really bad-for-you food.
Let's see, Wisconsin has chocolate-covered bacon on a stick. Texas has fried beer. Massachusetts offers fried jelly beans, and North Carolina has a "koolickle." (You probably could guess, but I'll tell you anyway: a koolickle is a pickle soaked in Kool-Aid.)
To my way of thinking, this year the food to beat is the "Big Kahuna Donut Burger" being served up at the New York State Fair. For a little more than five dollars you can get a quarter-pound hamburger sandwiched between halves of a grilled, glazed donut.
Add a few extras like a little cheese, some bacon, lettuce, onion, relish and you've just gulped down 1,500 calories. That should provide enough energy to see the entire New York State Fair -- with Connecticut and Rhode Island thrown in for free.
Now we all know that such things aren't all that good for us, but sometimes we just can't help taking a big, juicy bite from the temptation which has been placed before us: sort of like Eve and Adam, sort of like all of their children.
There is no doubt about it: out there somewhere is a temptation with our name on it. Satan and the world have spent considerable time putting together the proper list of ingredients which -- when presented at the right time and in the right manner -- will tempt our spiritual palate and seduce us into sinning.
We are sinners. This means we need a Savior.
No, we don't need a Savior from the Big Kahuna Donut Burger; we need a Savior from sin, our sins, all of them.
It is to be that Savior which motivated God's Son to enter this world. He came to be our Savior because He was the only One who could do the job. Only He could resist temptation; only He could fulfill the Commandments; only He was big enough, powerful enough and holy enough to pick up our sins and pay their price upon the cross.
His third-day resurrection from the dead is our assurance that all who believe on Him as Savior will be forgiven, freed and given life eternal.
THE PRAYER: Dear Lord, for sending Your Son to be my Savior from sin, I give thanks. May I resist temptation and glorify His Name. It is in His Holy Name I pray. Amen. _____________________________________________________________________________________________________________
YESTERDAY'S QUIZ: Who was Shemaiah? A false prophet hired to discredit Nehemiah, and who opposed Jeremiah. 1 Chronicles, Jeremiah
DOUG HERZOG, SEVEN DAY CHAMPION
Sun- Bible study 8am; worship 9am; Bible study 10:30; Elders 11:30
________________________________________________________________________________________________
NEWS:
6- mckenzie
7- Sweet
13- Mauch
14- McDowell
20- Mauch
21- Panhorst
27-
28- Sweet
September
3- mckenzie
4- Panhorst
10-
11- Schaumberg
17-
18- Heitgerd
24- Mauch
25- mckenzie
October
1- mckenzie
2- Panhorst
8-
9- Winn
15-
16- Heitgerd
22- mckenzie
23- Schaumberg
29- mckenzie
30-
November
5- mckenzie
6-PEPER
12-
13-PEPER
19-
20-PEPER
23- (Thanksgiving Eve) mckenzie
24- (Thanksgiving Day)
26-
27-
____________________________________________________________________________________________________
The ninth annual T-3 Men's Retreat is set for Friday-Sunday, September 23-25, 2011. This promises to be another great experience for the men of St John's and other Lutheran congregations in the St. Charles area. In fact, men from all over the metro area have joined this special time in the past. Men 18 years of age or older are eligible and they need not be Lutheran to attend. The retreat will be held at Mark Twain State Park at the Si Coburn Group Camp. This is a beautiful setting for a weekend of adventure and growth. The theme of this year's retreat is "Respectable Sins" and the study times during the retreat will be spent exploring the areas of our lives where we have come to accept less than God might want from us.
The retreat will feature great food and a lot of activities A scramble golf tournament, fishing tournament, trap and skeet shooting competition, and euchre tournament all take place on Saturday morning. If none of these interest you, you may choose to spend time reading, hiking , biking, site seeing, or napping. Prizes are awarded to tournament winners at dinner on Saturday evening. Campfires on Friday and Saturday nights provide the opportunity to get to know others better under the stars. Music is a big part of the camp experience and you will enjoy hearing and singing familiar songs with the 100+ men who typically attend. The culminating worship service on Sunday morning is a special time of praising God for all His gifts to us and a great way to prepare us to return to our homes and lives.
The cost of the retreat is only $42 and this includes meals and a commemorative tee-shirt. Attendees have the option of staying in group cabins or tent camping on the grounds at no additional charge. You can even arrange to stay in a local motel near the camp at reduced rates if you like.
A brochure with all information and a registration form will be available soon in the narthex. You can also register online at www.t3mensretreat.org using PayPal. It is really easy and you can see pictures of the camp and facilities there, too.
This is the year for you to go to the T-3 (trap-tackle-tees) Retreat. Sign up, meet new friends, bring old friends, and join in the fun of growing your faith. For more information, contact Don Hugo at Zion –636 441-7425 ext 246 or home 636 441-9954.
For ANGIE SCOTT, who had her gall bladder and an obstruction in her bile duct removed yesterday.
OUR CHURCH as we continue the CARE PROCESS.
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