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 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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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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December Update.

November was kind of a pain in the neck for Carl. This is a pun, because November is the first time Carl was having significant pain in his neck since, maybe, February 2010. The Doctor's reviewing his PET scan decided that the Irinotecan / Vinchristine chemotherapy was not working. So, on Monday December 6, 2010 Carl was once again checked into Froedtert Hospital for inpatient chemotherapy. This time he was given Ifosomide, a drug he has had before, and a new for him drug (something like Itopocide, I'll correct this when I get the name right). The Doctors also took this time to help get Carl's pain under control.

Carl was in Froedtert from Monday December 6, 2010 to Friday December 10, 2010, getting out after 8:00 PM in the evening. What's new at Froedtert? New Chemotherapy Pumps. Ooolala. (See photo below)


This is a kind of boring update.

Here is a photo of our family from the Thanksgiving weekend. Notice that Carl has some hair. The extra dog on the right is Rosie whom we watched for a couple of days. This is a fast snapshot, not a portrait, no one combed their hair, (Carl hasn't combed his hair for months), and I didn't take the photo. I can't believe I am adding this photo in, except this post is SO dry and boring. I do like Anthony's foot, I think it is cute.


There shouldn't be any chemo from now until past Christmas, and Carl should be feeling fine for the Holidays. Carl continues to work at his job pretty much full time when he is not at the Doctor's or getting chemotherapy.

Vacation, Fathers Day, and Chemo

Carl's outpatient chemotherapy on May 24 and June 1, 2010 left him feeling the worst he felt post chemo. His leg was in such sad shape that the chemotherapy scheduled for June 14, 2010 and June 21, 2010 was canceled - his leg needs time to heal. He couldn't bend his knee or exercise. Fortunately, as June progressed, Carl leg improved, and he get lots of rest. Carl went to work the week of June 14, and on Thursday, June 17, he went to Church for the first time in a while. Miranda's VBS (Vacation Bible School) sang at the service.



Friday, June 18, 2010, Carl's hair was falling out so fast that he asked me to quickly shave it before work. It was about an inch long, and now it is gone again. However, because the chemotherapy was canceled, we were able to visit a friend up North at her house on a lake near Crivitz - a mini vacation.


Saturday and Sunday, June 19-20, 2010, We were up North! It was beautiful and very restive. Carl slept a lot. Carl had a nice Father's Day.

Sunday night we had a father's day party with friends. Here is the whole family on Father's day.


Wednesday, June 23, 2010, Carl was finally able to bend his leg enough to exercise on a stationary bike at the YMCA. (We recently got a membership).

Thursday, June 24, 2010, Carl met with the Dr.; his leg had healed enough and he got a dose of Chemotherapy. The main drugs Carl got were Gemzar (also known as Gemcitabine) - and Taxotere, (generic name - Docetaxel). He last got this drug combination on June 1, and felt very unwell after it. We are hoping this time his reaction will be more tolerable. The oncologist reduced the dosage of Taxotere.


Friday, June 25, 2010 Carl went to work and got his Neulasta shot around 6:00 PM. This is the shortest time we have had to wait for the Newlasta shot, I guess we should bring all four children more often.

(Carl is hamming it up for the photo below - I promise... The nurse was wonderful.

Saturday, June 26, 2010: This was the Day that Mequon has their 4th of July celebration - (The Fun before the Forth, they call it.) Carl felt OK for the parade and park visit, and went to sleep early while I went to the fireworks with two of the children.


Sunday, June 27, 2010: Carl got up after a lot of sleep and made it to church - It's very peaceful and easier to do when the four children are sleeping in. Then Carl came home and took a nice long nap, woke up for several hours around dinner time, and felt well enough to eat. His leg feels much better, (he can bend it!). The current chmoetherapy makes him feel light headed and tired, but so far he is doing better then last time, (knock on wood). Tomorrow should be the worst day, if past trends are any indication.

Chemotherapy Round No. 4 done

Carl completed his 4th round of chemotherapy (third round of inpatient Chemotherapy) on Friday, March 5, 2010. He was in the Froedtert Hospital continuously from Monday, March 1, 2010 through Friday.

Carl and I think he is tolerating the chemotherapy very well, although Carl said Thursday and Friday were really bad. I tried to get him to define it, and he said that Thursday alone felt like 40 hours of having the flu. The bed is always moving and he thinks he was awake almost every 2 hours.

Here is a photo of Carl on Thursday. On Thursday, he can hardly open his eyes. It was a hugely busy week for the children and me, and only Miranda got a chance to visit Carl in the Hospital, and only on Thursday. (Visiting earlier in the week is preferred.) The other three children wanted to stay home. I'm not sure what to think about that, but Miranda and I had a nice visit.

The photo below shows what Carl and Miranda think of chemotherapy. But we don't hate the chemo, oh no. Hate the cancer, love the treatments. Or at least tolerate them. Technology and prayers will keep Carl alive.

So this is what the inpatient rounds of chemotherapy infusions are like (approximately- don't go using this as a recipe for in-home care) for treating Carl's sarcoma (Mon-Friday Jan 18-22, 2010; Mon-Friday Feb 8-12, 2010; Mon-Friday March 1-5, 2010).

Chemotherapy for Round 2, 3, and 4:

• Over 2 hours of time, Simultaneously
  • Saline solution, 1400 mg.
  • Ondansetron 16 mg - Anti Nausea medication
  • Dexamethasone 20 mg - Anti Nausea medication
• Over the next 22 hours of time
  • Mesna 700 mg - this protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.
  • Ifosfamide, 3800 mg in 500 ml of saline solution.
  • Adriomycin, 34 mg in 500 ml of saline solution. This is the heavy hitting drug, and the main difference from the outpatient chemotherapy.
    
• When those bags are empty, a saline flush of the IV ports, followed by heparin, and then Carl is disconnected so that he can take a shower. Once the shower is over, he is connected up again, and the next 22 hours infusion starts. This is done 4 times in all.
• After 4 days, Over the last 6 hours of time
  • Saline solution, 1400 mg.
  • Mesna 1400 mg - Mesna protects the kidneys linings from bleeding, which is a side effect from taking Ifosfamide.
• When those last bags are empty, a saline flush of the IV ports, followed by heparin, and then Carl is disconnected. And he can go home. Yeah. Tired.

Most days in the hospital, Carl took about seven oral drugs a day as well. More fun.

24 hours after the end of the in-patient chemotherapy, on either Saturday or Sunday, Carl has to go back to the Medical complex, this time the Cancer Center's 3rd floor Day hospital, for the Neulasta shot.

This is a picture of the Neulasta (also known as pegfilgrastin) injection. The instructions say "do not shake tube". So now I wonder, what happens if you shake the tube? Will it blow up? Or just not work? Whatever. Don't shake it. We want it to do whatever it is that it does.

(Dr. Seuss could say it better.)
[Neulasta promotes the white blood cell count, since the chemotherapy just wiped out all the white blood cells as a side effect, and white blood cells are kind of nice to have around.]

And finally, here is Carl walking out of the 3rd floor Cancer Center Day Hospital. Maybe someday I will tell you a funny story about this picture.

The Cancer Center is a beautiful facility that just opened in May 15, 2008. (I think the Cancer Center is officially called The Froedtert and Medical College of Wisconsin Clinical Cancer Center, [that's 10 words...] I've also seen it referred to as the MCW Clinical Cancer Center - much more catchy.) The titles leave me wondering: just what does the work "Clinical" add to the name, besides three syllables, I mean. A warm and fuzzy feeling? Whatever. Beautiful building, $95 million dollars of technology, and Carl can't wait to leave.

P.S. The MCW acronym is frequently referred to as M-COW. Very Wisconsin like, don't you think?

Chemotherapy Round 3 is over

Carl third Chemotherapy session went very well. He checked into Froedtert Hospital Monday, February 8, 2010, and came home Friday, February 12, 2010. As in Course 2, the first two days he felt pretty good. This time he started getting very tired on Wednesday, and was pretty "out of it" on Wednesday and Thursday. On Friday he felt fairly bad , and told me not to come and visit before I picked him up. (Carl describes it like feeling you are coming down with the flu, which I interpret as achy, tired, unwell, and not interested in food.)

The doctors send him home on Friday from inpatient chemo with a boatload of prescription medicines for nausea, pain, and more. (7 different prescriptions, I think, some crucial, some of optional, some of them to counteract side effects, etc.) On Saturday and Sunday Carl felt fairly bad whenever the prescriptions wore off, but otherwise rested and watched the Olympics with the children.

On Sunday morning I drove Carl back to Froedtert for a Neulasta shot. Neulasta is prescription drug, administered as an injection, that boosts white blood cells in the body. It is apparently very expensive. (Somewhere between $1000 to $7000, give or take a thousand, the nurse guessed.)

On Monday Carl rested and didn't go to work. He did leave the house to briefly go to Homestead High School to talk about Tom's High school schedule for Sophomore year.

It's Tuesday Feb 16, 2010. Carl went into work today. He let me drive him in, and agreed that this time around he will be taking it easier then last time, where he admits he might have overdone things a bit. We are back to a happy place where the anxiety is pushed off, at least for the time being, and we can pretend things are normal.

Thank you again, for all your support and prayers.

2nd Chemotherapy Round

Carl completed 4 nights and 5 days of inpatient chemotherapy, Monday, Jan 18th, 2010 to Friday, Jan 22, 2010. Prayers have helped. I hope chemotherapy goes this smoothly each time.

Monday Jan 18, 2010 : Carl and I left around 7:00 AM to go to the Medical Complex. The children were home from school and were supposed to be sleeping, so we left them at home. But three of the children woke up enough to say 'bye. A good friend came over at 8:00 AM to feed the children breakfast and hang with them, until enough of them were up and dressed and in condition for her to transport the kids to R's Fantasy House for Children.

As for Carl and I, maybe someday I will outline this mostly boring day, but right now I don't want you to fall asleep. After appointments for blood work, X-rays, Doctor R, a dietitian, and Doctor C, Carl was admitted to the Froedtert hospital 4NT wing. (We privately refer to 4NT as "The Spa"). (Froedtert is pronounced like the two words 'fray dirt', which is no reflection on the hospital, which is clean and staffed with wonderful people. We saw nothing frayed during Carl's stay.)

The Chemotherapy drip was started on Monday at around 2:30 PM, and was then left going continuously until Friday, around 8:00 PM. I eventually left to go rescue Saint R from my children. [Oops, I mean pick up my children from Robin's House.]

Tuesday Jan 19, 2010 : Carl was doing great with his Chemo, and was making use of the recumbent exercise bike in the spa's family center, which had a nice view.

Wednesday Jan 20, 2010 : Carl was doing well with his Chemo, but was tired often. Then three of the four Grisa children came to visit him from 7:30 PM to 9:00 PM on a school night...

Thursday Jan 21, 2010 : Carl pretty much slept for 20 hours. This may have been the result his children visiting, or his chemotherapy, we aren't actually sure.

Friday Jan 22, 2010 : Carl was very tired, but determined to leave as scheduled. He declined an offer of staying an extra day at the spa, pretty much because he just felt like going home. At 8:00 PM we were leaving the hospital, and the very cool nursing staff behind.

Saturday Jan 23, 2010 : Carl had to return to the hospital for a scheduled shot of Neulasta (also know as Pegfilgrastim - see how close those words are?). Had he been dehydrated or had his heart been racing, etc., they would have given him IV fluids, but fortunately it was a relatively quick in - quick out visit to Cancer Center's Day Hospital. Carl pretty much rested for the rest of the day.

Sunday Jan 24, 2010 : Carl go to stay in his own house for 24 hours. Friends visited, and some of the church came to him since he didn't get to church. I thought Carl would be tired, but he was in good spirits and up and moving around from about 2:00 PM to 7:00 PM.

Monday Jan 25, 2010 : Carl slept in, and was going stir crazy staying in the house by about 2:30 PM. I took him on a small field trip. We will see what the rest of the week brings...

He has no more Doctor appointments until February. (OK, I know that is technically only days away, but I'm kind of glad the next appointment is in an entirely different month...)

Thank You so much to all who have said prayers, sent notes, called, visited, and helped us. We have had help with rides, hanging with our children, meals and more. Dawn Fuchs from our church has offered to help coordinate meals and rides, and has been a real blessing to our family.