Sunny Day (Sunday) Golf

It's been a busy month since I last updated with blog.  I'll try to give a partial update on September.  

The children were back in school and getting into multiple activities.  Miranda joined cross country and has practices or meets 4 days a week, and Anthony is in the Drama club, stage crew and the first play.  The three boys are in Boy Scouts, Tom is in best buddies, and Nathan has to get up the earliest of all the children in the morning.  All four children are involved in religious education.  Three of the children take piano lessons.  All of the children have lots of school work, and multiple field trips are pending and etc. etc. etc.  

On Thursday, September 8, 2011, Carl finished a 24 hour infusion of a new (for Carl) drug - Trabectedin, (brand name Yondelis).  This was his 17th course of chemotherapy.  He stayed overnight at Froedtert to get this infusion, and came home Thursday.  On Friday September 9, 2011 Carl was back at Froedtert to get a Nuelasta shot.   

Carl at the Golf outing

Carl basically slept most of the days that followed, until Sunday.  On Sunday, Sept. 11, 2011, the whole family loaded into the car to go to the Ironwood Golf Course, where we attended a golf event put on by some of Carl's coworkers from Arandell.   

Anthony Golfing

The weather on Sunday was perfect.  Beautiful blue skies, green grass and trees, and a warm day really made for a wonderful day on the golf course.  We were watching the golfers and snacking, when Anthony spotted three of my brothers golfing.  He went over to join them, and soon Carl and I and the other three children followed.   

Tom Golfing

We 'helped' my brothers finish golfing their last four holes.  My four children and I had never golfed even one hole of golf, so the entire family had an adventure while Carl watched from the golf cart.  We had a great time, and none of the golf carts broke... 

Thank you Scott, Stacie, Elle and Stef, for setting up this event.  It was a great day for our family.  Thank you also to the other 30-40 golfers and friends who joined us.  I hope all had as nice of a day as we did. 

Carl and some of the golfers

The money raised from the Carl Grisa Open was raised for and will be used to fund the children's college education.

[By the way, Carl's work (Arandell) held another very successful fund raiser for Carl at the start of summer.  I don't want anyone who helped with that one to feel that I am not grateful for that event.  I hope to post photos and blog about that event soon.  It is so easy to get behind on a blog.] 
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Golfing Benefit for Carl

On Sunday, Sept. 11, 2011, Carl's co-workers are hosting a golf event to benefit Carl.  Golfing from 1:00 PM to 4:00++, Dinner to follow.  This notice may be a bit last minute, (my bad) but if you are interested you can still register.  (As late as noon on Saturday, even with a foursome). On the positive side of signing up this late, the weather forecast is good.  This might be a nice spontaneous Sunday adventure.

The location: 

The Ironwood Golf Course, 

W270 N6166 Moraine Drive, 

Sussex, WI, 53089.

Here are some details:
 

$45/person includes 9 Holes of Golf, Cart and Dinner

Over $1,000 in raffle and hole prizes, including

• 50/50 Raffle
• 2 tickets to attend the Pebble Beach National Pro‐Am tournament 

To reserve your spot please call….
Scott Conway (262-309-5964)

or (Thursday or Friday only) 

Stacie Pike (262-255-4400 ext. 280)
Elle Little (262-255-4400 ext. 152) 

Stef Raasch (262-255-4400 ext. 297)


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School starts and so does Chemotherapy

The children are back in school, and Carl is back to getting chemotherapy.   
The children started school September 1, 2011, and have had four days of school so far.  Tom is a High School Junior (11th grade), Anthony is a High School Sophmore (10th grade), Nathan is in 8th grade, and Miranda is in 7th grade. 

Carl started an overnight 24 hour infusion on Wednesday, September 7, 2011, and that chemotherapy infusion is ending today, Thursday, September 8, 2011.  It is a new chemotherapy drug for Carl - an experimental drug with some weird name.  (I'll find out the name later)  

I would love lots of prayers that this new chemotherapy drug works wonders - the stupid cancer cells have been growing again.  Please put Carl on your church's prayers list as well.

I guess I shouldn't be surprised that some cells are growing, since Carl has had only one other chemotherapy course in 2011, but I admit that the new cells are discouraging.    

By the way, Carl started out this chemotherapy course weighing 136 lbs.  

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Weighty issues

As I mentioned in the previous post, on July 11, 2011 to July 14, 2011, Carl had his 16th course of Chemotherapy.  It was the hardest course of chemotherapy Carl had had to date.  


Carl's weight had been holding stable within a 10-15 pound range for the duration of his cancer since 2009.  He may have been at 160-165 pounds in 2009, and during chemotherapy he might drop up to 10 pounds, which he would then usually gain back most of the weight before the next round of chemo.  The surgeries (in 2011) really knocked Carl down, but he would gain most of the weight back.  But here is a recent history of weight.  All of the weights here were taken at the Doctors office on the Doctor's scales.


On May 16, 2011, Carl weighed 154 pounds.
On May 18, 2011, Carl weighed 153 pounds.
On May 23, 2011, Carl weighed 149 pounds.
On May 27, 2011, Carl weighed 146 pounds.
On June 9, 2011, Carl weighed 148 pounds.
On June 16, 2011, Carl weighed 158 pounds.
       JUNE 18, 2011 - Neck surgery
On July 7, 2011, Carl weighed 141 pounds.
On July 14, 2011, Carl weighed 142 pounds.
       JULY 11, 2011 to July 14, 2011 inpatient Chemotherapy 
On July 28, 2011, Carl weighed 131 pounds.  
       This is the lightest Carl was been since high school.  

On August 2, 2011, Carl weighed 137 pounds.

The July 2011 Chemotherapy Course really left Carl with little appetite and strength.  Of all the cancer months, this is the time Carl spent the most time in bed.  The next chemotherapy course was postponed, and then postponed again.  Carl has regained his appetite, a bit, and his energy, somewhat, and he is now back to work when he doesn't have doctor appointments.  Now it seems he may have chemotherapy on August 29, 2011.

In the meanwhile, Carl leg has been hurting more.  This has not helped things.  Carl uses crutches and/or the walker all the time.  An MRI on July 16, 2011 gave us the information for a procedure that might help (a cyto ablation followed by an injection of epoxy directly into the bone), but we only met the the doctor to talk about the MRI on Aug 2, 2011.  I wish now we had not allowed the 6 week delay, but Carl was really dragging and we dropped the ball.  We set up a procedure for August 26, 2011, the earliest time available with all the doctors vacations and what not.  Now the leg has gotten worse, and so we wait again, to find out more.  

At least the summer weather has been great for all this waiting around that Carl and I seem to be doing.  I hope your summer has been going well. 

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Chemotherapy Course Summary

Carl asked me recently how many chemotherapy "rounds" or "courses" he has been through. I didn't know, so I thought I would summarize them.  Websters dictionary defines a "course" of chemotherapy as a "series of doses or medications administered over a designated period".  Carl's doses of chemotherapy are three week blocks time.  He gets the chemo drugs to start the chemotherapy course, and the rest of the "course" is built in recovery time before he can get the drugs again. 

Dec 28, 2009 to Jan 1, 2010 Chemotherapy Course No. 1,
Main drug was Ifosomide, with concurrent radiation to the neck.

Jan 18, 2010 to Jan 22, 2010 Chemotherapy Course No. 2 - five days inpatient (meaning he stays at the hospital the whole time, overnight as well.)
Main drugs were Ifosomide and Adryomycin.

Feb 8, 2010 to Feb 12, 2010 Chemotherapy Course No. 3 - five days inpatient
Main drugs were Ifosomide and Adryomycin.

[ Feb 22, 2010 Pet Scan and MRI's. ]

Mar 1, 2010 to Mar 4, 2010 Chemotherapy Course No. 4 - five days inpatient
Main drugs were Ifosomide and Adryomycin.

April 19, 2010 Chemotherapy Course No. 5 
dose of ? on day 1 and day 8 with concurrent
[ April 20, to May 7, 2010] Weekday radiation treatments to the leg.

[ May 17, 2010 Pet Scan ]

May 24, 2010 Chemotherapy Course No. 6 - 
Day 1 and Day 8 dose of

Gemzar (also known as Gemcitabine) and
Taxotere, (generic name - Docetaxel)


June 24, 2010 Chemotherapy Course No. 7 - Day 1 and Day 8 dose of

Gemzar (also known as Gemcitabine) and
Taxotere, (generic name - Docetaxel)

July 12, 2010 Chemotherapy Course No. 8 - Day 1 and Day 8 dose of 
Gemzar (also known as Gemcitabine) and
Taxotere, (generic name - Docetaxel)

[ July 22, 2010 Pet Scan ]

Aug 9, 2010 to Aug 13, 2010 Chemotherapy Course No. 9 - five days inpatient
Main drugs were Ifosomide and Adryomycin.

Aug 31, 2010 to Sept 4, 2010 Chemotherapy Course No. 10 - five days inpatient
Main drugs were Ifosomide and Adryomycin.

Sept 24, 2010 to Sept 29, 2010 Chemotherapy Course No. 11 - five days inpatient
Main drugs were Ifosomide and Adryomycin.

[ Oct 4, 2010 Pet Scan ]

Oct 18, 2010 Chemotherapy Course No. 12 - Day 1 and Day 8 dose
Main drug was Irinotecan

Nov 11, 2010 Chemotherapy Course No. 13 - Day 1 and Day 8 dose
Main drugs were Irinotecan and Vinecristine

Dec 6, 2010 to Dec 10, 2010 Chemotherapy Course No. 14 - five days inpatient
Main drug was Ifosomide

Dec 27, 2010 to Dec 30, 2010 Chemotherapy Course No. 15 - five days inpatient
Main drug was Ifosomide

July 11, 2011 to July 14, 2011 Chemotherapy Course No. 16 - five days inpatient
Main drugs were Ifosomide and Etopocide

Lance Armstong only had to have 4 courses of Chemotherapy, according to Carl, who recently read Lance's book.
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Michigan Vacation 2011

We have visited Carl's Dad in Michigan every summer for years, often over the 4th of July weekend.  



Carl and the children, Michigan, July 2011

This year, we loaded the car and headed to Michigan on Thursday, June 30, 2011. 

We hadn't been sure we could fit the Michigan vacation in because of Carl's chemo and surgeries schedules; but fortunately, Carl had recovered enough from his neck surgery (on June 18, 2011) that we could go. 

View of Chicago from the road (I94)

Carl and I usually split the driving, but this time I drove the 350+ miles each way.


Fountain at the Chicago Botanic Gardens


We decided to stop more often so Carl could stretch his legs.  The first stop was the Chicago Botanic Garden, were we ate lunch.

Lunch at the Gardens

We stay at Carl's Dad's log cabin on Little Wolfe Lake when we travel to Michigan.  The cabin's address is in 'Grass Lake' Michigan, which is kind of confusing.  There are so many beautiful lakes in Michigan.  Grass Lake is in the middle of the Michigan, between Ann Arbor and Jackson. We almost always spend time in Livonia, Michigan as well, where Carl's Dad lives.  Livonia is a nice suburb of Detroit.  This was the first time that we didn't travel on into Livonia, but Carl was tired enough from the ride to Grass Lake. 



View of Cabin from the lake



Grass Lake Michigan is a great place to have awesome $1.50 ice creams.  The dollar gets you a LOT more ice cream at Grass Lake's "The Lovin Spoonful" ice cream parlor then at home.

Carl and company at the ice cream shop

(Carl is wearing a winter coat because he was having a hard time regulating his body temperature in air conditioned places.)


This year, Miranda, Nathan, Anthony and Tom built two cardboard boats for a Cardboard boat race on the 4th of July in Grass Lake. 

Cardboard boats.  Ours were the only ones not painted

Miranda, Nathan, Anthony and I raced them, Tom and Carl cheered the boaters on. 



Miranda placed 3rd in the one person boat race!

Surprisingly, our unpainted boat (above) held up almost as long as the painted boats.


The start of the 2 person Cardboard boat race

There was an extra two person boat that the organizers gave to Anthony and Miranda for the two person race.  Anthony and Miranda are loading in the pinkish boat above.  They  finished 1st in the two person race.
 

Nathan and Nick in the two person race

  

The Cardboard Boat Race winners



Other activities over vacation included boating, tubing, eating and relaxing. 



Carl's Dad, Carl, his Aunt and Mom



Nathan and Carl

We took the pantoon boat to a sand bar in the middle of Big Wolfe Lake, where boats hang out while people play in the water, and a DJ broadcasts fun music.  One thing we really missed was seeing all the cousins, the schedules didn't work as well this year.  Otherwise, we had a nice 4th of July vacation, and then headed home on the 5th of July.

A Covered Bridge Somewhere in Michigan

Carl used a walker most of the vacation, (he uses the walker on uneven surfaces and grass), so we had the walker tied to the top of the car.

We got home, and the next week (July 11-14, 2011) Carl had inpatient chemotherapy at Froedtert Hospital.  Well, at least we managed to fit the vacation in!

Click on any photo to see it larger.
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Rest and Recovery

I am writing this Sunday, June 26, 2011.  Carl was discharged from the hospital just over one week ago on Saturday, June 18, 2011, after a Wednesday June 15, 2011 neck surgery that removed the remaining visible tumor from his neck.  [Actually, before the surgery, no tumor was visible.  (It was on the inside, ha ha)  But once the neck surgeon cut him open...  The surgeon looked around and removed all the tumor in the neck that was visible to the surgeon, and visible to the imaging (CT/MRI/X-ray?) equipment  in the operating room.]  

Froedtert's Operating Room used for Angiograms

The photo above and below shows the operating room used for Carl's two Angiogram procedures on Monday June 13, 2011 and Tuesday June 14, 2011.  Above, the large white structure with the large curved arm is an imaging machine that rotates and slides forward and back to takes images before, during and after the procedure.  A second curved arm in the center of the above photo takes images from the top and bottom of the surgery table.  Carl's bald head is visible on the far right.  Carl is still in the transport bed, and will be transferred to the operating table shortly.

The photo below shows the same operating room from a different angle.  This is the view of the operating room from the monitoring station, a room next to the operating room that has glass windows viewing the operating room.  I believe this is where the machine technicians operate the imaging machine from.  Carl is still on the transport bed.  The curved arms of the imaging machine are visible at the far left.

Froedtert's Operating Room used for Angiograms

Carl has spent the last week resting and recovering at home.  He did get lots of rest, hours of it a day, but there were still four children running to and fro - so not all of the hours in the day were 'restful'.  I estimating that Carl slept more then 12 hours a day, and Carl didn't move around too much.  He has started being a bit more active this weekend, and was exercising a little bit on a reclining exercise bike I bought at a rummage sale.  He went in to his work only for a short visit to say hi on one day.  Of course he didn't stay at home all of the time, though.  Probably once a day we/he left the house for some reason or other.

Carl came home from the hospital this time with a walker.  So now Carl has had a cane; crutches; a foot orthotic; and now a walker.  Today was one of the first days since the surgery that he has been able to move a bit without using either the walker or the crutches.  We went to church for the first time in weeks (with the walker). 

Carl on June 18, 2011

The photo above is from the day Carl was released from the hospital, Saturday, June 18, 2011.  Miranda came with me to pick Carl up from Froedtert hospital, and since it was a Saturday, we stopped at the Wauwatosa Farmer's Market.  Should we have?  Probably not, but Carl wanted to.  We did buy a couple of plants from local farmers for Carl's "earth box" garden.  One of the things accomplished this week was that Carl and the children planted tomatoes and cilantro and basil in two "earth box" gardens.  I can tell that Carl has lost weight in this photo. 

One of the highlights of this weekend has been a family film-festival viewing of the Lord of the Ring trilogy - tomorrow night we hope to watch third movie in the series, "The Return of the King".  We have decided that Nathan would make a good Frodo, the ring-bearer.


Thank you once again for your prayers.  We continue to welcome them. 

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