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Monday, October 31, 2011

Incredible Support

Carl has been going through a lot, obviously.  One thing I have not really gone into on this blog is the incredible amount of help and support we have received from many sources.

Our church family, friends, relatives, Carl's coworkers, and even complete strangers have helped our family in many ways throughout 2010 and 2011.

Carl and his Pricing Analyst Co-workers.
People have helped our family by watching our children, transporting our children,transporting Carl, praying for Carl and our family, bringing us meals, visiting Carl at home and in the hospital, giving us treats and gift cards, helping us with yard work and home repair, fixing our cars, and more.

I want to say a big Thank You for all the support. 

I remember a story about Saint Patrick - were one of the most powerful ways of saying Thank You was to say "Thanks be to God";
so I say "Thanks be to God" to all of you.

In September 2011, Carl's co-workers held a golf tournament fund raiser, which I blogged about here.  I never wrote about another large fund raiser picnic that Carl's co-workers organized and held on June 3, 2011, and so today I wanted to rectify that.  Both events had many things in common, but both days stand out as days of exceptionally nice weather;   "God Blessed" Days.
Chris, Carl and Scott, the Pricing Analysts
(Pricing Analyst is Carl's Job title)

It was very odd to be half of the focus of the fund raiser like the Arandell folk held.  I remember trying to gear up to not cry at the picnic.  I never thought that I might someday be the recipient of such goodwill, assistance, charity?  It was an unfamiliar situation.  I don't know if I was too unemotional, if I was shaky, if I seemed too party like.  Suddenly you are at the center of attention, where people are giving generously of their time and money and support.  The Arrandell event was even more emotional - many of the people there were strangers to me, but good friends of Carl.  I had heard stories about some of these people over the years.  I wanted to make a good impression, and convey gratitude, remember people's names, and not cry.   

Usually I take pictures at an event, happy to enjoy things from behind a camera lens.  It didn't seem right to snap a lot of photos at a fund raiser for our family, so I only took a handful of shots at the end of the picnic.
I'm going to tell my children Carl flies kites at work.
Here are Carl and his co-workers, flying kites.

Chris, Carl and Scott, the Pricing Analysts
This photo makes me laugh. It reminds me of taking pictures of my children.  People goofing off and only one person is looking at the camera.

The money raised at the fund raiser picnic really helped my family financially and with medical bills.  The money raised at the golf outing was raised for my children's college education.  For both fund raisers, I want to say, "Thank You, and Thanks be to God".

I want to say Thank You as well to the people who spent a ton of time organizing both events.  I don't have a photo of you - but I really want to say THANK YOU for all the effort both events required.  I have volunteered for many things over the years and know how a small project grows and doesn't always fit seamlessly into a schedule the way you hoped it would.  Thanks again, and Thank you to everyone who has been helping my family, in any way, big or small.

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Saturday, October 22, 2011

End of September update

After the 17th dose of chemotherapy, (infusion Sept 7-8, 2011) Carl had a rough time regaining his equilibrium and energy.  He didn't go to work for nearly two weeks after the infusion.  This chemotherapy round was probably the hardest for Carl.  It does not help that Carl's left leg has become unable to bear weight.  Carl walks with a walker or crutches at all times now.

On Monday September 12, 2011, Carl's dad and mom came for a visit from Michigan.

Carl, Carl's dad Frank, and Carl's sister Heidi

We had a family pizza party and we took a group photo.

We also took a quick family photo, shown below.  Left to right, Miranda (12 years old), Anthony (15 years old), Nathan (13 years old) and Tom (17 years old).  Carl and I are in the front.

Later in the same week Carl's brother Greg came to town for a visit, on the way to visit Carl's Dad.  

On Monday, September 26, 2011, Carl started his 18th course of Chemotherapy with a 24 hour infusion of Trabectedin, (also called Yondelis).  Again, he stayed overnight at Froedtert to get this infusion, and came home Tuesday.  On Wednesday September 28, 2011 Carl got a Nuelasta shot.   

Carl was determined that this course would not knock him out like round 17 had, and he was able to recover better.  He actually felt like working, and building models, etc.

Carl got some interest in cooking back, here is his first attempt  at a French baguette.  Carl's hair does not seem to be falling out with the latest chemotherapy drugs. 

Carl Grisa
Carl making French Baguettes

In the back of the photo above you can see a odd gadget on the counter.  The photo at the left is a close up.  The item is Carl's favorite cooking gadget, the "Thermo-Pen".  It's probably his favorite cooking toy (of many). 

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Wednesday, September 14, 2011

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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Thursday, September 8, 2011

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.

Carl Grisa Golf Open

The location: 
The Ironwood Golf Course, 
W270 N6166 Moraine Drive, 
Sussex, WI, 53089.

Carl Grisa Golf Open

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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Wednesday, August 24, 2011

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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Wednesday, August 3, 2011

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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