Appointment on Oct 26, 2010

I will post results of visit with Dr. Olga when we get home.

April 6, 2010 Lab Work to be done

On Tuesday April 6, Stefan will have his lab work done. Meaning his blood drawn and checked out if he needs a bone biopsy. He has been lucky and has not needed a biopsy for some time now.
Will post results after he comes home, till then.......

Bone Biopsy .... NOPE 8-26-08

Stefan's appointment today was a good one. His lab work showed that he did not need to have a bone biopsy done. The next scheduled date of a check-up will be at the begining of March. Till then Dr. Olga said, "Keep up the good work". His platelets are at 129. Normal would be 140 and up. So he is working toward that goal, slowly but surely.
He is tired a lot, yes, but that is because he DOES so much having fun. That trip across the southern US was a trip and a half. He made over 4200 miles with his buddies on the motorcycle trip. But such is life he had a ton of fun while doing it. Of course he does not do those kind of things every weekend. Till next time , TAKE CARE of yourselves and enjoy life.

Still Waiting for the review to be DONE

As of today April 9, 2008. I have not heard from THEM to unlock the blogger site.. COME SIT..... Please be patient, I am trying my hardest to do that, since I have so much to share with you all. Take care and stay in touch, by other means. Hey you know the numbers to dial.

ISSUES WITH COME SIT BY THE FIRE BLOG

Just so you don't start panicking...

Somehow, the Come Sit By The Fire blog got blocked by Blogger's anti-spam robots. We are working with Blogger to get the blog unblocked.

In the meantime, Daniella cannot post for 20 days (until April 24th).
As you can guess, she just doesn't know what she's going to do with herself, since she can't post anything for practically the whole month!

Rest assured, she will be taking plenty of pictures that she will post when the blog gets unblocked! Until then, I know she wanted to make a few upcoming birthday wishes:
We wish a very Happy 60th Birthday to Bruno on April 4th. Sto Lat!

We wish a very Happy Birthday to Jadzia, also on April 4th. Sto Lat!

We wish a very Happy Birthday to Adam on April 18th. Sto Lat!

Those are the upcoming birthdays I know off the top of my head. If there are any I missed, I'm sure Daniella will let me know and then post something here!

Until this issue is resolved with Come Sit By The Fire, you'll just have to get your updates the old-fashioned way - by stopping by the Macas' house.

Or maybe you can call - I hear phone technology has come a long way... people actually have phones they can carry with them these days!

Or if you really need to see pictures of what Daniella's been up to, you can ask her to email them to you. Or maybe share them in an online album (at Walmart.com or Shutterfly.com).

Or just wait till the darn blog goes back online and read the updates there.

Whatever. It's your choice. I'm not gonna tell you what to do.

I just thought I would post an update here on this blog, in case folks come here to check things. I hope that we can keep this blog as it's been, just about Stefan's journey. But I did feel I should post this here... I'll delete this post once everything blows over with the Fire blog.

I hope the changes I implemented on the Fire blog are active - I changed the settings so that only one day of posts would appear on the main page when you went to the site (instead of 4 days' worth of posts and pictures.) Maybe the change will alert readers that something is off with the site. I also posted an explanation in a comment on the last post, but you actually have to click on the comment link to read it.

Either way, Daniella called me twenty minutes ago to let me know that somehow the Fire blog was blocked and that's she's taken measures to getting it unblocked. Hopefully, that will happen sooner rather than later.

Everyone have a great April.

-Suzia

Stefan's Results of the Bone Biopsy

Stefans appointment went well. His counts are up to almost were they should be for his health. His WBC is at 7.3, His RBC is at 3.84 and the most important thing that the Dr. is looking at/ for are the Platelets:.... they are up to 129. Now that is a good jump from the low of 102, 103 104 that he has had for the last few check ups. All in all he is doing fine. His next appointment I will schedule for in 6 months. Sometime at the end of August, if the blood work looks fine, then he will NOT have to have another bone biopsy at that August appointment. Will keep you posted as to what he is having done. Take care of YOUR health. It is the most important thing you could do for today.

Feb 19, 2008 NEXT APPOINT

Stefan's next appointment will be on Feb 19 with his oncologist for a bone biopsy.

He will have blood work done before the appointment and then a visit with Dr. Olga. Will post results when I receive them myself.

Results Bone Biopsy Nov 2007

The results were OK according to Dr. Olga Frankfurt. She said Stefan's next appointment will be in 3 months. So it is scheduled for end of Feb 2008. Will keep you posted to exact date and procedure done.

Bone Biopsy Nov 6, 2007

Stefan's appointment went pretty well,..well almost.... After the blood work, Doctor Olga started on his bone biopsy procedure. She tried the right side of his hip bone and could not find a spot to "drill into", so she tried again on the left side. This means that he was given and injection to numb the right side of his hip and now a "shot" to numb his left side. Finally she was able to get a spot to go into his left hipbone. The results "looked" okay for now she said. I will get a call on Wed or Thurs with the results from the lab.

Stefans' blood work was good, his WBC (white blood count) last time was 3.8 now it was 4.4,.... his RBC (red blood cells) were at? but they are now at 3.87, still low for now, need to be at least at 4.20,....... his HGB (hemoglobin) was 13.2 now it is 13.5,....... his PLT (platelets) were at 99 now they went up to 102. Still a ways to go, to get to the low level of 140-390 but he is climbing up to that spot.

Stefan went back to work after this episode with the doctor visit, by evening he was pretty sore to sit or stand, but he still played with the grandkids, Maddie, Stevie & Lily, who were over for the evening on Tuesday. They just wanted to see his band-aids on his back, which were right below his belt line.

Little Stevie has taken to sleeping with Dziadzia now and he was in bed right next to dziadzia when they went to sleep around 8:30pm.

BONE BIOPSY Nov 6, 2007

Stefan is scheduled for a bone biopsy on Tuesday Nov 6, 2007 at the Hospital. He has to have the blood work done first and then the biopsy in the morning. Will post results when we receive them also.
Knowing Stefan he will proceed to go to work after the biopsy , just like has done with all the other biopsies since he has been out of the hospital. He is a very strong man to do this, not me I would be staying overnight at the very least. My pain tolerance is not that HIGH.

OOOPS sorry forgot to tell you

Stefan's appointment went well for his CT scan of the sinus. He does not have to have another one for a year or more. Unless something else comes up and warrants a a visit to the hospital, he is done with Dr. Ison the Infectious Disease doctor for now. He is doing great, feeling fine. Running around with the family to the sights and places that his wife and grandkids take him, and enjoying himself.
Visit with Dr. Olga the Oncologistis scheduled for November sometime. Will let you know what date it is, for now Take care of YOURSELF.

Next Appt July 25, 2007 A.M.

Stefan is scheduled for a CT scan of his sinus again, maybe this IS THE LAST ONE. Dr. Ison will tell us if he has to come again , maybe in a year or so.
He also will get blood work done for Dr. Frankfurt.
I will post results when I get them.
Take care for now. Have a great summer.

CT Scan 2007

Stefan went in for his CT Scan of the sinus area and his Chest x-ray on May 24,Thursday morning, at 6:30am. He left the house at 5:30 am. He then went to work for the day. The doctor said he would call only if there were some other THAN good news to share. Welllllllll he has not called all day , sooooooo that means: No news is good news , right?

He is scheduled for another CT Scan again in July/August. I will let you know about the results for that one also.

These scans are to make sure there is nothing GROWING like the MUCOR that he had when he was in the hospital. Since he is off the medication of Posiconazole now for a month, they think that he has the fungus licked, gone, arrividerci, sayonara, dowidzenia. Oh wait!!!! not dowidzenia...... We do not want to see that thing again EVER.
So for now YOU take care of yourself and drop us a line once in awhile. Tell us how you are doing? Bye

Bone Biopsy went fine....

Sorry this took a while to post, I happened to be somewhat busy with the grandkids.



This is Dr. Stein with Stefan getting his bone biopsy this time, and the lab technician.

The results from the bone biopsy came in and they are good. Dr. Olga said they will see Stefan for another biopsy in three months again. He will be going in , in a month for another CT scan, but that was with Dr. Ison, the Infectious Disease.

Bone Biopsy done on May 1

Stefan had his bone biopsy done on May 1, 2007. We should get the results in by Friday the latest. The doctor said it looked good, but we still have to wait for the lab results. A new Dr. Stein did the bone biopsy. She is in her 3rd year of the Fellowship under Dr. Olga Frankfurt.
Stefans lab works look like this: His WBC is at 4.4 ,........ RBC is at 3.72 still under should be at least 4.20, His HCT is at 37.8, low side is 38.0, His Platelets are at 97, low side is 140 so he still has a ways to go on those counts. Will keep you posted on the results on friday. Have a good day.

Appointment of 4-25-007

We went in to see Dr. Ison the Infectious Disease doctorat 6:00 am. He had a CT scan and a Chest Xray done . From the results of these two tests, we were told that it looks OK for Stefan to get OFF of the oral drug that he was on for over a year, twice a day. The one that was experimental and then became FDA approved, Posaconazole/ Noxafil. He no longer takes it for now. BUT we have to watch for signs incase......he gets a swelling in his face again like last time, or any itching in the face or sinus area, any redness, etc.

He is scheduled for another CT scan of the face /sinus area in one month again and then in three months.
But Stefan is happy to be off of that one drug for now. The only one he is still on for is for the cholesterol for when he had the 5bypass surgery done in Jan 2003.

So that was good news on this side. Next week on Tuesday May 1, 2007 we/he goes in for a bone biopsy to be done. This is his 3month check-up for the leukemia.

NEXT Appt will be April

Stefan will have an appointment end of April with Dr.Ison (Infectious Disease) to see if he can drop the Noxafil (Posaconazole). He will have a CT scan of the sinus and nose area done first. If all looks fine they will make a decision and let him know.
The following week in May he has another bone biopsy scheduled to be done by Dr. Olga Frankfurt.
So far all his results have been great.

Jan 22, 2007 Same BLOG posted as COME sit......

I posted the same exact thing on the other website. Just in case you missed this one or that one.
We had a special dinner to celebrate Stefan's one year transplant date. (Which actually will be Jan 24, 2007)Suzia presented Stefan with a Paperback book containing the whole blog site entries pictures and all.

Stefan's mother Hela was so glad to put this year behind us all.
The BOOK and Stefan walking in from work and being surprised we are all here for HIM.



Besides adding additonal readings from Daniella's view and son Steve's side of this journey for Stefan, she added her side of this journey as well.
I read some of the pages and thought to myself Did THIS really happen? I/we lived thru this? Wow!
Well Stefan will finally be able to READ this stuff, maybe not, he lived thru it.

Suzia will be posting a link to look at the book of 178 pages soon. It contains all of the BLOG entries and comments, including pictures that were posted.

Check-up Tues Jan 23, 2007

Well we went in for Stefan's check-up. Had the bone biopsy done (they got 2- 1/2 cm. of bone biopsy to work with) and the blood work afterwards. She saw me and figured I had some news to mention about Stefan, because he never says that he is tired or anything like that. But she said the test results will show up if anything is happening inside him. I mentioned to Dr. Olga that Stefan and some family members were planning to go on a ski trip, well she was not too happy about it. But when the bloodwork results came in she was ok with the trip then. His blood work results were like this: his white blood count (WBC) was 7.3, his hemoglobin was at 13.4, and his platelets still low but moving to the 100 hundred mark were at 90. Doctors did tell us that it would take at LEAST a year to re-cover to get past 100 in platelets.

While we were there I gave her a Birthday card for Wed. She was surprised , but I did remember her mentioning that on his transplant day, Jan 24, 2006 that, that was her birthday, sooooooo, of course I wrote that down mentally. She was very happy to be remembered in that way by a patient.
Dr. Olga will call on Wed with the biopsy results.

Next appointment will probably on the same day that the appointment with Dr. Ison (Infect Dis.) on April 25, 2007.

Getting a view of Stefan

Hey you, don't take my picture.

Oops wrong, Stefan, but a nice grin, don't you think?

Dr.Ison , Appt. Jan 10, 2007

Stefan had an appointment with Dr. Ison, (infectious disease) on Wednesday. He was told that he would like him to have a CT Scan done before taking him OFF of the Posaconozole (now called Noxafil FDA name). Scan will be scheduled for April 25, to see if there are any traces of the MUCOR virus that attacked Stefan in his sinus cavities. If all is clear then he can stop taking THAT drug. If not, then keep on taking it and another CT Scan to be done in a month. So for now he IS still taking the drug twice a day as before. We get it as a prescription drug now , which means that we pay for it.

Stefan has another appointment with Dr. Olga on the 23 of January at 9am. At that time he is scheduled for a bone biopsy to be done. This will tell us if his counts are moving or still standing below 100. We are hoping that the counts have made SOME progress since last visit. Will keep you posted. Thanks for checking up on him here.

Now Posaconazole is Approved

Yes that drug that Stefan was taking is now FDA approved. Which means that now it is a prescription drug. We have to buy IT, as of the December refill. Our co-pay is not bad, considering the price of this drug $2300.00 per month. Our co-pay is only $50.00. He will stay on this drug for another couple of months. At least until middle of February. Stefan has an appointment to see the infectious disease doctor in January. They have to do an exit survey/interview with him to finish the study that he had signed up for in the begining. He seems to be tolerating this drug, afterall he has been on it for a year.

Till next visit , think of him and say a little prayer for his counts to go UP. THANKS

Nov 21, 2006 Check-up

Stefan had an appointment today at 8:00 am. His results are typically the same as they were last month. Not much change, but Dr. Olga is still okay with the results. She said it DOES take time to get back to normal counts. She keeps saying that it will be a year the least before they do come back to that point. So for now we hope and pray for the counts to GO UP. Next appointment will be with Dr. Ison the Infectious Disease doctor on Dec 13. He will determine if and when Stefan goes off the study drug of Pozaconizole. Next appointment with Dr. Olga Frankfurt the Oncologist will be in January 2007.

A REALLY BIG THANK YOU FOR YOUR DONATIONS

A REALLY BIG THANK YOU
To each and everyone of you who donated to the Leukemia Foundation in honor of the WALK in Stefan's name......THANK YOU.... THANK YOU..... DZIENKUJE.... DZIENKUJE BARDZO.....Your names are posted on the site........(Hopefully I got everybody that donated)

It was for a great cause. Donations are always accepted, as we all know they are also tax deductible. Will post a few more pictures soon.

RESULTS Bone Biopsy Oct 10, 2006

Dr. Olga Frankfurt called on Thursday to tell me that the results looked good. Platelet counts are still low. They went up to 87. Still very low, but ok. Waiting slowly and patiently she said. For now next appointment will be on Nov 21, 2006 7am.

Bone Biopsy Oct 10, 2006

Dr. Olga scheduled Stefan to get a bone biopsy on Tuesday October 10, 2006. His platelet count is still not where she thinks they should be, so hence the bone biopsy again. When he returns from his office visit, I will post news on what the Dr. thinks this time after his biopsy.

Oct 3, 2006 VISIT

Stefan's appointment was this morning at 7am. His platelets are still not moving very quickly up to par. So Stefan will be scheduled for a bone biopsy next Tuesday morning on October 10, 2006, at 8:30am. Dr. Olga just wants to be sure there is nothing else wrong with him at this time. Hopefully this time the platelets will be moving up to normal count. Will keep you up to date on his progress. Otherwise see other site. THANKS.

Just a quick REMINDER for the WALK

The Leukemia Light the Night Walk is tomorrow, Thursday Sept 28, 2006. Walking starts at 7pm. We plan to be there around 5:30-6pm. Let me know if we should wait for you in the parking lot to walk together.

Light The Night Walk Sept 28, 2006 -FOR STEFAN

This note below was from Karen & Steve Maca, Our daughter in Law and son. She got the BALL rolling on this sign up. Please join us for this walk. It is about 30-45 minutes, In Naperville, called the Riverwalk. It is in the evening on Sept 28, 2006 Registration and festivities: 5:30 p.m.Walk: 7:00 p.m. The lit up balloons that EVERYBODY carries is wonderfuland look great at night. Strollers are OK. Hope to see you there.
Last year I went on this walk with my kids and grandkids, to take my mind off of what I was going thru, and to help in a way . NOW it is a year since then and I am soooooo grateful for Stefan's recovery. He is in remission.
If you would like to join us register, this way the Group will know about how many people to expect. Parking is plentiful, but it would be good if you carpool.

TO DONATE TO THIS CAUSE CLICK ON THIS LINK. THANK YOU :http://www.active.com/donate/ltnChicag/1767_daniella549


FROM KAREN & STEVE
Subject: Walk for Leukemia I don't do this often but it is for a great cause. As everyone knows Steve's dad (Stefan Maca) was diagnosed with Leukemia (AML) a little over a year ago and he is a SURVIVOR! He is in remission, which is just too awesome for words since he was diagnosed a year ago from the 5th of September. There is a walk in Naperville to walk in Honor/Memory of people with Leukemia. I will be walking with Steve's family and many other people and if anyone wants to join that would be wonderful. If anyone wants to donate that would be wonderful too since it is for such a terrific cause. You can also go to http://www.lightthenight.org/ and see for yourself. Thanks again everyone!
Karen Maca


Directions and Parking
Naperville Parking Tips & Directions
Start and finish is located at the Grand Pavilion at the Naperville Riverwalk as marked on the map.
Parking is available in all public lots near the event site in downtown Naperville. The best option is the large parking area at Centennial Beach parking lot at the corner of JACKSON and WEST in Naperville. You will follow the parking lot all the way to the back and to the right to find the Grand Pavilion. Other parking options include: adjacent to the baseball fields and concessions and directly adjacent to the Grand Pavilion.
Directions to the Naperville RiverwalkFrom the East, take 290 West to I-88 West (exit on the left), toward Aurora. Take the Naperville Rd Exit. Turn Right on Naperville Road, which will become Naper Blvd. Turn right on Chicago, right on S. Main, and left on Jackson. Continue on Jackson until you reach West.Alternate route from East, take I-55 S toward St. Louis. Exit at Weber, go North. Weber will become Naperville Rd. Turn left on Washingon, left on Aurora, right on Eagle, and left on Jackson, follow until you reach West.From I-55 North, Exit at Weber, head north. Weber will become Naperville Rd. Turn left on Washingon, left on Aurora, right on Eagle, and left on Jackson, follow until you reach West.From the West, Take I-88 East and take the Naperville Rd Exit. Turn Right on Naperville Road, which will become Naper Blvd. Turn right on Chicago, right on S Main, and left on Jackson. Continue on Jackson until you reach West.

Aug 22 visit-Updated

Stefans' visit with Dr. Olga proved to please her this time. His blood results for platelets finally have crept up a little. He is at 87 now, was at 69 for a long time. Things are starting to move in a good direction. He will still be on Posaconazole, but not for long. His next visit with Dr. Ison the Infectious Disease doctor will be in January 2007. Next visit with Dr. Olga (Oncologist)will be on Sept 26. (hey who's birthday is that?) Till then . Bye Next visit will be on October 3, NOT Sept 26 as posted earlier.

Read up on family & friends and their updates on other site.

Contact Daniella or Suzia for link to other site. There you will also be able to post YOUR news on family and their activities.

August 22, NEXT visit

After we return from vacation Aug 12 to 18, with the WHOLE family, will post news on visit.

Results of latest biopsy 7-2006

The bone biopsy results came in again - this time, everything is "fine." The only thing that the doctor said was that his platelets are still "low." They are at 69, normal should be around 140. But that will take up to a year for him to recover. Nothing to worry about, she said. So Stefan continues along with living life and feeling fine.

Next visit in a month Aug 22, 2006 for a monthly check-up. Next bone biopsy probably will be scheduled for October or later.

Bone Biopsy 7-11-06-PHOTOs

Having blood drawn, after the bone biopsy procedure.


This time the procedure was a little more painful to him, according to the doctor. She watched his face and she said"you are not saying a thing". But you know Stefan, he is a "I can take it", guy.

According to Dr. Olga Frankfurt, all seems to be going well towards the road to recovery. Will get results on Friday for the biopsy. Stefan's health is back to "normal" as is his lifestyle.

Do you see his hair and mustache is back to what IT was before this Leukemia thing.


Next office visit will be on August 22, 2006. Next bone biopsy is scheduled for some time in October, maybe November. Will keep you posted on that date.

Bone Biopsy Scheduled-7-11-06

July 11, 2006, the next bone biopsy will be done in the office again by Dr. Olga Frankfurt. He will have his lab work done at 8:45 and then see Dr. Olga at 9:00 am. We think these bone biopsies will happen again one more time in October and then it will be only every six months to get checked out. Will let you know the results when we get them. For now Thank you again for checking up on Stefan. He has been keeping busy with LIFE. Check other website.

Happy Father's Day, Popsie

Popsie...

Happy Father's Day!

We love you!

Love,

Suzia and Koy,

Ela, Julia and Stefciu -- Happy Father's Day, Dziadzia!

Appt..... In June went well

Had the appointment at 7 am. Dr. Olga Frankfurt saw Stefan. Had his bloodwork done. Next appointment and Bone Biopsy will be done in July 11, not Sept/Oct as I said in earlier memo. Dr. said she wants it every 3 months, and last one was done in April of 2006. Then the next one after that will be in Oct. Hopefully his medication of the experimnetal drug will also finish by then. Hoping your summer is going great. Take care of yourselves.

Next Appt June 13, 2006 7AM

Stefan will be going in for Lab works and to see Dr. Olga Frankfurt. His monthly check-up and lab works. No biopsy of any kind is scheduled till later in the year, like Sept/Oct.





Just a quick note and picture of one of the nurses, Maria, that took care of Stefan. We enjoyed her company very much. She was very helpful when chemo was started in September and throughout Stefan's stay in the hospital. She explained a lot of the details that we would encounter.
Thank You ,Dzienkuje Maria.

Check-Up went fine 5-16-2006

Stefan had his check-up and Lab works done today on Tuesday. All went well, looking good. Next appointment will be in 4 weeks. Dr. Olga said she will see if possible to come in 6-8 weeks instead of this 4 weeks.
Picked up his next supply of Pozaconizole. He will still have to keep on taking that possibly till end of September. Will keep you posted.

Milestone Remission / Birthday Party

Had a wonderful time at THE Birthday Party for us May people. See other website.

Just a little note

I guess the people that have seen Stefan in person or pictures lately also noticed that his skin is darker. His forhead birthmark is more prominent and the skin on his hands is darker. His feet and toes look as if had them tanned. The doctor said this will be that way for a while until ALL the chemo is gone from his body. His beautymarks/ moles are more visible also. Well I just thought you might want to know that about Stefan. The last picture entry of him with the doctor made me notice it more.

Bone Biopsy-PHOTO& THANKS TO ALL &RESULTS 4/18

Well Stefan had the Bone Biopsy done today.

After initial check up of temperature and blood pressure and blood work this is what Stefan looks like in the office visit.
Having his finger poked is minute, compared to the pain that I think he experiences in the biopsy procedure.
This is the amount of culture and slides they took smeares of to see the bone marrow. The Dr. recovered a piece of bone marrow at least one and 1/2 centimeters.
After having his "back side" numbed Dr. Frankfurt inserts a hollow needle to get a piece of the bone marrow after going thru the hipbone. She will call later in the day with the results from the biopsy and the lab results.

For now she is pretty sure that the Leukemia is under control and that Stefan is in REMISSION. Finally got a picture of Dr. Olga Frankfurt.

Stefan's discomfort level is very high and tolerable. The Dr. kept asking "Do you feel any sharp pain?" and of course Stefan's answer as always "No, I don't and if I did it is not THAT painful Having seen what Stefan has gone through, I personally really think he is a very brave and strong person for going through this all. I would have crumbled a long time ago. His mother, Babcia Hela keeps telling me that he is like a tiger fighting going through all this.

ONCE AGAIN I Thank each and every one of you for all your prayers and keeping us in your thoughts often. Knowing that this is what has kept Stefan strong and seeing the end of this ordeal for US.
YOUR cards and calls and talks to us has helped tremendously. We must all remember that this is what family and friends are for, for taking care of each other in good times and bad.
LOVE AND HUGS TO ALL.
P.S. Next visit in a month May 16. Lab works only.
****************

RESULTS Dr. Olga Frankfurt said they were fine. He is in remission. His blood work was also fine, counts are where they are supposed to be at this time for him.

Check up March 28, 2006

Stefan had an appointment with the doctors on Tuesday. His blood work results came in fine. He is doing great, although not as fast as Stefan would like to see recovery. The doctors told him it will take time for his blood results to come back to normal. They are creeping up slowly, very slowly.
His next appointment will be on April 18, 2006. On that day he is scheduled for a bone biopsy. Those results should be good news for us.
Even though he has to continue to take the antibacterial and the antifungal medications for another 6 months. Stefan is weaning himself off of the other stuff. No more Nexium, no more Sennakot.

Sunday March 19, 2006

Well, Stefan still has to stay on the Posaconazole for another 6 months, according to the doctor's visit that was on Wednesday.
He did his one hour Inhalation Therapy on Friday night.
On Sunday he tried his hand at practice golfing in the yard.
Other than that he is staying pretty much on the course of what the doctors say to do and what to take when.

March 15, 2006

Stefan has an appointment with the Infectious Disease Dr. today. His other Dr. appointment last week went well. He is scheduled to have a bone biopsy done in April near the end of the month. He is feeling good, tired most days, but when he comes home and is greeted by the grandkids his energy level goes up again. The grandkids are over 3-4 days a week to visit and have dinner with us.
Hoping today's visit will let him go off the Posaconazole, we'll see.

March 1, 2006

Really nothing new here. Stefan went for a check-up and the doctor said "See you in two weeks". That will be March 7, 2006. He is doing great, following all doctors orders and the Wife's. He is working pretty much full time now. Feeling good, a little bit tired as his new stem cells have not completely renewed yet. But they will. So for now YOU take care of yourself and stay healthy.

Sunday, catching up 2-19-06 PHOTO

Not a lot news, just catching up doing things on Sunday. Monday Stefan has a doctors appointment again at 11:30 am
Mr Maca with Maddie
Can you spot what is different?

Stefan doing his Inhalation Therapy

Thursday Feb 16, 2006

Not much news today. White Blood count as of today is at 4.2, his hemoglobin is it 11.8, the platelets are at 62, his absolute neutrophils are at 2.3. Today the nurse came in to show Stefan how to use the Inhalation Therapy that he will need to do once a month for the next 3 ? months. It is a 300mg syringe of medication dispensed into a breathing apparatus that he breathes for an hour. He had it in the hospital (it tasted very yucky he said). It should be done in a small confined area and it takes an hour to complete. Then for the next 1- 2 hours any female of child bearing age should not be breathing this mist. So he will be doing it in the bathroom upstairs which is small enough to contain the vapors. Does that mean I can not have any more kids? Oh well, I think(??) I have enough grandkids for now to make me happy, but a few more would not hurt either.
Stefan has gone to the shop a few times, just to make sure they are getting along. They are doing fine, they just miss him there.
The stubborn old Polish man in him will not let him give up.


We would like to Thank each and every one of you reading this, for your prayers and support. The cards he receives are a daily inspiration to him also. Knowing that people think about him and care is comforting to know.
Will try to keep you ALL informed of his progress as much as possible. For now take care of yourselves and stay healthy & happy.

If there is any NEWS that you would like to share with us, please VISIT my other website......Come Sit By The Fire.......

Share the love - It's Valentine's Day!

As things return to "normal" around the Maca house, so too does the hectic and crazy schedule, at least when it comes to seeing the wnuczki!

Even though Julia had her Brownie Scouts meeting yesterday, we still got to Stefan and Daniella's house in plenty of time for dinner. It was the first time since the holidays that the eleven of us in the immediate family were all able to get together at the same time. Stefan, Daniella, Koy, Ela, Julia, Stevie, Steve, Karen, Maddie, Stefan JM, and myself - we had a sit down dinner and caught up a little with what's going on in our lives. Afterwards, we all drove over to Bo's house, to wish him a Happy Birthday and have some cake with him.

All in all, it was a good visit - everyone was in good spirits and good health. The kids still think it's a little funny to see their Dziadzia without a mustache. That is, until he pulls off his hat and reminds them that there isn't any hair up there either! But Stefan was smiling and happy to have his wnuczki come visit him.

His doctor's appointment yesterday afternoon went very well too. The head of the team told Stefan that he could discontinue the use of his antibiotics, as there was no evidence of any infection. His counts are looking good - they're where they're expected to be - steadily growing stronger.

The list of Do's and Don't's that Stefan has is quite lengthy, but the overall strength is that he's home. He's not hooked up to an IV pole, since his picc line was taken out before he came home - and that's made his life a bit easier. The chaffing and rash on his wrist is gone now. For his whole stay in the hospital, anytime he'd wash his hands, the medical info "bracelets" would get wet and the skin under them would chafe - but now that the bracelets are off, the rash is gone. He's got a healthy appetite, even if he doesn't have full use of all his taste buds back yet. He's still quite a bit tired, but he told us he naps often. As his body gets stronger, his energy will come back too.

For now, he's happy to be back home, able to see his family and wnuczki. Before we know it, he'll have his full strength back... and life will be back to Normal again.

Sat. Feb 11, 2006 - (photo)

Oh the weather outside is frightful... Stefan says it looks nice outside, yeah... he doesn't have to shovel it though. Great for me because it only snowed maybe an inch. Looked like it was going to snow more than that. Stefan really wanted to try out his new snow blower.

Stefan is walking around the house in his new attire: jogging pants, flannel shirt and his forever friend now, his warm fleece hat. He said that he knows now what Koy, his son-in-law, feels like... Cool on Top.

Stefan did not lose his eyebrows or eyelashes, but his "chrome dome" is cold all the time. I guess it is hard to build up a layer of fat up there, wouldn't you agree?

We did not get results from Friday's blood draw yet. But I must assume they must have been ok, or else they would have contacted us to come in for a transfusion or whatnot.

On Friday, I went out for the evening with Anna & Diane. While I was gone, Stefan had guests over - Cathy & Chris Szubinski visited with him for a while.

Here's Stefan in his hat, eating lunch.


He says slowly, some of his taste buds are returning to normal.

Friday, Feb10, 2006

Today Stefan's counts are WBC 2.7 his Platelets are at 38 and the Hemoglobin is at 12.1 Those are rather good Dr. Frankfurt told us. Our appointment with her is on Monday morning. Stefan is still pretty tired eats breakfast, a scrambled egg or two and a piece of rye bread and tea and then off to rest again. Lunch is a chicken sandwich fried with only salt pepper and onions with some mashed potatoes or rice, then you know it is time to rest again. Dinner is pretty much the same any meat as long as it has no seasonings more than salt pepper and onions. His menu is limited because of this new antibiotic, for another 4 weeks and then he could have the lunchmeats and smoked sausages etc. For now all that is a no no no. Till the weekned.

Headline News..... HE'S BAAAAACK

Yes the mighty scary Stefan is baaaack.
Ok maybe not mighty at this time,.. neither scary to us either, but it sounded good.
Yes we are home tonight. We had some fresh rye bread and some pierogi for dinner. Now I have to go get the prescriptions that are needed for this time around. A new antibiotic. some new vitamin that is special for neutropenic diets, some more potasium, magenesium,same Acyclovir (Antibiotic), same Nexium (stomach protector) Sennakot for contstipation, Immodium for Diarhhea. He received a supply of his (yuk) Posaconalzole to take home with.
Besides being Neutropic (low Neutrophils) Stefan will also be on a Low Tyramine Diet. That means for the next 3 weeks no aged foods, like swiss cheese, muenster cheeses,Mozzarella, Cheddar, Romano, Camembert, Provolone, all cheese spreads, no smoked luncheon meats, no bacon, sausage ,liverworst, corned beef, lox, smoked fish, no pickled foods, no dressings made with aged cheeses or blue cheese or made with eggs. No beer, ale, wine, alcoholic drinks, limit caffeine to 2, 8oz. servings daily only. No fava beans (his favorite kind) no avocados, sauerkraut, chinese pea pods,even store bought yeast cake bread products are a No No. Sourdough breads also are out. So Rye bread is ok. Well enough of our delicious menu for now. We are off to catch a nap then we could go get some un-interrupted sleep in our own bed, for first time in three weeks. Good night for now. If I rememeber anything else that I wanted to tell you I will update.
P.S. His counts for today were WBC at 1.4, Hemoglobin at 9.8, Platelets at 16 and his Absolute Neutrophils are at 0.7.

He aslo received a bag of Platelets before he was discharged today, that was like a booster shot before going home.
The nurse will be here tomorrow to draw blood and check up on him at home. Then again on Friday. On Monday next week we already have an appointment at 10:30 to be in the Stem Cell Clinic for check ups.

What do these counts mean??

Well if I told you Stefan's White Blood Count is at 1.1 and his Hemoglobin is at 10.1and his Platelets are at 16......That means he can go home on Tuesday afternoon. The doctors were here this morning and they are confident that the counts will continue to go up as the days go on. His reaction from this mornings' doctor visits are more smiles on that baby-looking face. Still on antibiotics for today and some more potasium, but that is it for now.
On Sunday afternoon Bruno and Diane visited, had some ice cream here and a quick visit. Stefan had taken a short walk but, that was it for Sunday.
Now we wait for that good news to be heard on Tuesday, "Ok you may go home"..
Karen the stem cell nurse here will come in today to discuss the discharge plan and the appointments we have to keep for the next few weeks. We were told that for the first few weeks, once a week, he will need to come in to the clinic here to be tested. A nurse will come to the house to draw blood for a few weeks also. We'll be looking forward to Tuesday.

Late night visit

We happened to be out downtown last night, and we decided to stop in for a quick visit. Stefan and Daniella were just settling into bed, watching the late night news when we knocked on their door. We stayed for about 40 minutes, chatting and catching up.

And there was catching up to do... Stefan may be going home this coming week - they're taking it day by day. He's still disappointed that he won't be home to watch the big game on his big screen tv, but that's how it goes.

Seems the most noticeable of side effects from the chemo has finally caught up with him... he's losing his hair, in clumps, he said. He still has a little patch on the back of his head, and a few of his stubborn sideburns are still hanging on. But most surprising - because it didn't fall out in September - is his mustache. He told us when he washed his face yesterday, all the hair came off in the towel when he wiped his face dry. So he looks MUCH different now - not just bald, but with no mustache! I think the last time that happened was back in 1970, when he shaved it off for his wedding!!!

Just thought you'd like to take a peek at the "happy couple"! Overall, they're both in good spirits, despite the setbacks and side effects. They're happy, because they know this hard part of the journey is nearing the end.

Have a good weekend!

Sat Feb 4, 2006

Well the weather is still gray and kind of cloudy here. Stefan is sleeping now at this moment. He is receiving 2 units of blood. His WBC today was at .4, not much movement but it is moving. His Hemoglobin is at 8.9, his platelets are still at 14, kind of low. Hence the blood units. No fever today, but the blood culture they took on Thursday evening showed an infection in his Piccline. Meaning somehow a "bug" bacteria got in during a dressing change. You know they are in the air and everywhere. Cannot see them buggers, they just "land" anywhere and start a colony. Ha ha . Stefan is on antibiotics of Cefepime and Vancomycin. They stopped the Cipro while he is on these meds.
Well it finally happened, Mr. Kojak came to visit him and left his calling card for him. Meaning the rest of Stefan's hair on top, took a stroll going, going, gone. Ok he still has a little hairline on the back of his neck, and I mean a little line. Hey ! I could see the scar he got when he was in a motorcycle accident with Andy Bury, YEARS ago. And it was right on the corner of Long ave and Wrightwood, way before we even lived there.
No walks today either, he is tired and in bed. According to the doctors they THINK he might go home around tues or wed, but that is not definite. Really that means, when his counts go up, no sooner. Also Stefan will not be able to SEE the Super Bowl Game on his big TV. Oh well at least the Bears are not playing. But Dana & Lynn are rooting for the Seahawks, who else would they do it for.

Counts are still low

I talked to Stefan this morning. He sounded very tired and down. Instead of going home today, as he'd hoped, he's stuck for at least another 48 hours. Yesterday early evening, they took him for an x-ray and some lab work, to see what sort of infection was causing him to spike a fever (near 101). The preliminary results should be back tonight around 8pm, but the final results won't be back till Saturday 8pm.

For now, they are giving him IV antibiotics. His wbc came back stronger today - back up to 0.3 (it dropped down to 0.1 yesterday). His hemoglobin is down to 8.4, so he will undoubtedly get whole blood today; he will probably also get platelets. So he's not "unattached" any longer - Ms. Ivy Pole is following him around again.

He had high hopes that he'd be home before the weekend, but his non-existant immune system foiled his plans. Unless his numbers climb a whole bunch in the next 24 hours, I don't think he'll be home this weekend. He's a little disappointed that he can't watch the Superbowl on his big screen TV at home... but it's not like the Bears are playing or anything. So he misses seeing the game on the big TV - not all that big a deal. With any luck, he'll be home on Monday or Tuesday - so he can say he was in the hospital for 3 weeks.

Today is day +10, meaning day 10 after the transplant. (The day of transplant was day 0. Every day before that had a negative number, so that the day he went in to the hospital was day -8. It should have only been day -7, but because they didn't start his chemo until after 5pm, he had an extra day to wait for the transplant (which was done in the morning).) Counting both the Monday he went in and today, today is day 19 that he's been at NMH.

The typical time to see the numbers go up steadily is between days 10+ and 14+, so he's on track, at least according to what Dr. Olga Frankfurt has told him. Back in December when they were talking him through the transplant procedure, he was told that he should expect to be in for one week of chemo, then the transplant, and then roughly three weeks of observation after the transplant. But he was also told that folks with good results and minimal side effects could be out in two weeks... two weeks after the transplant, not two weeks total time. So he's on track for that time frame.

Let's everybody keep your fingers crossed that Stefan has a productive weekend. Send good, strong, positive thoughts his way - he needs all the help he can get to raise his counts up! Thank you for keeping Stefan in your prayers. We know that He has heard our prayers because of all the help He's given Stefan already. We just need a little more help getting through this last bit. This hard part of the journey is almost at an end - next we begin the long road to full recovery.

.
Don't forget to stop by Daniella's blog, Come Sit By The Fire. There's a gallery of 'Blast from the Past' photos - see if you can find yourself!

Thursday Feb 2, 2006

Well today I would say that Stefan has really hit bottom. His counts are WBC 0.2, Hemoglobin is OK 10.8, Platelets are at 24. His last walk that he did with umpfff was yesterday late afternoon. In the evening he had his shoes and socks on, but just did not muster enough energy to go for a walk. Today he did not even eat all of his breakfast. He only ate one of the cereal boxes that he orders for the morning. The doctor group that saw him this morning said this is what they expected. Stefan has not been on any walks today and matter of fact he has not gotten out of bed, except to use the bathroom. He says he is really tired today, mouth feels a little sore, but no sores inside. No swelling of feet either, but he says that his whole body "the bones" ache him all over. I tried to give him a little massage to relax him, but he aches too much to do that for him. He ran another little spike in fever this morning up to 100.0. Last night around 10 pm he spiked to 100.4. For now he is still not connected to an IV, unless the blood tests show otherwise that some of chemicals are too low or if he is not drinking enough liquids. He is sleeping more today than any other day since he has been in here this time. Stefan has not even asked for his favorite foods, just telling me to take MY food away from his view and distance the smell, so I eat away from his room. My Prince Charming is sleeping now, weather could be a source of sleepiness also today. It is cloudy outside and gray. Hey ,maybe I should get a little nap myself. Good afternoon to all........3:30pm

The home stretch

I talked to Stefan yesterday late afternoon, after he'd gotten both the platelets and whole blood. He sounded tired, and told me as much. Like he said, he's not on vacation at some resort - he's in the hospital, so it stands to reason that he shouldn't feel in tip top form. He's tired and sluggish some days, but he still gets up and walks the halls for 45min three times a day. Sure, he comes back sometimes winded, but that's par for the course. He's in recovery, and he's very aware of that.

All in all, the side effects of the chemo and transplant could have been much, much worse for Stefan. He still doesn't have oral sores, which would make it painful to eat; on the other hand, he's started to lose his appetite now, so he doesn't want to eat much. His body is achy and sore and he's tired more now. He also told me that he's had some hair loss this week. But the team of doctors comes in and asks how he's doing and he tells them he's doing well. Sure, there are negatives to how he's feeling, but as he put it - it's more of a state of discomfort than a state of pain. I mean - come on! You're talking about a guy who refuses novacaine when having dental work done, for that very reason. So, I know he's doing well - he's taking it day by day, and he can see the porch light at the end of the tunnel and he knows he'll be back home on Delphia shortly.

And we'll all be glad to have him, back where he belongs.

.
..
...

Keep sending those positive vibes his way - think "1,000" so his wbc climbs quickly!

Numbers are dropping... but still some good news

Stefan's wbc dropped to 0.1 yesterday (Mon, Jan 30) but rose back to 0.2 this morning.

However, his platelets dropped and he has received an IV bag of platelets. If his hemoglobin drops (it's now 8.8), then he will also receive whole blood today.

Despite the low numbers, Dr. Olga Frankfurt is still optimistic and expects that Stefan could be going home on day 10 (the transplant was day 0). So that means by Friday, if his wbc is over 1.0 and his other numbers look good, Stefan could be heading home! YAY!

Just thought I'd pass the info along...

Sunday , the counts are at...

Well the White Blood Count is now at an all time low for Stefan, it is at 0.2. He has gotten as low as 0.3, but this time even lower. His hemoglobin is at 8.8 When he hits 8.4 and under he will most likely get blood and platelets, which are now at 21.
The view today is gloomy and cloudy from up here. Stefan is still out of his room doing his walks for 30 - 45 min. 3 times a day. Still no shadow to follow him around except me, but I do not do the "walks". I know I should, they would do some good for me.
Well have a nice Sunday, take care, stay healthy.

Sat Jan 28 - Stefan is now neutropenic (photo)

The nurse came in this morning and told us that Stefan's white blood count dropped to .6, so he is neutropenic now. That means all incoming people have to wear gloves, gowns, and masks. Stefan has to wear a mask when he goes on walking rounds. And of course, he's on a neutropenic diet - no fresh veggies and limited fresh fruits (no berries and such). He is still in great spirits and has plenty of energy. He's still "disconnected" from Miss Ivy Pole. His appetite is still good and he's eating what he likes. I've brought him kiszka, kopytka, ponczki, kielbasa, barszczyk, rosol, his favorite rye bread, and other Polish yummies. I snapped this picture of him this morning, sitting on the "couch." Behind him is the view to the east, out towards the Lake.



It's been a busy few days... I went home on Wednesday evening, had dinner with the Koivuns, and then spent the night there with my wnuczki. Went to work on Thursday, ran a few errands, and scheduled a dentist appointment for Friday (he was unavailable on Thursday). I was just getting ready to leave the house on Thursday afternoon when Stefan called me to say that he was being moved, from 1529 to 1519. (1519 is a corner room, with a southeast view.)

From the room, we can see Navy Pier and the big Ferris Wheel. We can see the river. And we can see Lakeshore Drive. (And a bunch of buildings, but I don't know any of them... Sears Tower is southwest of us, and John Hancock is northwest of us, so we don't see those.) Woke up with the sunrise on Friday morning. Nice way to start the day, watching the sun rise over the Lake.



Gray day today, Saturday morning, so we couldn't see the sunrise. After breakfast, Suzia called... Koy needed some computer part from the house. They said they were going to go to the house, and asked if Stefan or I needed anything. They offered to pick me up from the El so I could get some things done around the house. Suzia picked me up around 12:30pm. We all came "home" and got busy doing "stuff." Koy took down our big table (still up from Wigilia). Julia helped me make rosol for lunch. Ela and Stevie helped clean up. While we waited for the rosol to simmer, we had some fun, singing carols and undecorating the tree.



Then Suzia took down my January Tree, because it's almost the end of the month. That is what it's called, right? The January Tree? Don't you have one at your house? Oh, see, I guess most people have a tree up in December, but not me. This year, I had a January Tree. They must not be very popular around here, but I read about them on the internet and thought it would be fun to have one. I didn't like it too much. Next year, I think I'll just stick with having a December Christmas Tree, like everyone else.

Well, the tree is up in the attic now, the dishes from lunch are done. Suzia and the kids are going to drive me back to the El now, so I can make it to have dinner with Stefan. Thanks for checking in to see how he's doing!

Thanks for all your prayers. It is with your help that he has beaten the odds on this journey, from September on. The doctors are surprised at how mild his reactions have been this week, and how few of the side effects of chemo he's experienced. With the very powerful doses of chemo he got this stay, he still has as much hair as he had on January 1st (which is quite a lot!). He hasn't had any nausea, oral blisters, or high fevers - all side effects that are "supposed to" affect everyone. The team of doctors keeps saying that he'll get them, but so far, he hasn't. Keep him in your thoughts and send good vibes his way. Maybe, just maybe, he won't get those nasty side effects at all. He has a way of beating the odds in that way - it would be great not to have oral blisters or complete hair loss to boot.

Thank you and have a great weekend!

This is THE day for Transplant (photo)

He was premedicated with Benadryl and hydrocortisone and Adiven to prevent and bad reactions. Well a man came in the room with a box of frozen TV dinners, (haha). Ok back to serious stuff he came in with a cooler with some liquid nitrogen (The dry ice that is very cold) and a bag of Stefan's stem cells inside the cooler.



He placed Stefan's stem cells in a tub of warm water, to get them close to but not at body temperature, to defrost partially. Then the nurse and stem cell co-ordinator nurse came in and stayed the whole time of admitting the stem cells into Stefan. This whole process took 45 minute. They started at 3:38 pm and it was done by 4:16 pm. There were 6.45 million stem cells in this bag. This was the first bag that was harvested in December. The second bag they kept ON ICE till if and when necessary to do again.



They kept asking if he had any itching, or burning or shortness of breath or a cough that was tickling his throat. He had none of these. He is laying flat on his bed and no special prepartions were done for this. Stefan is very sleepy now and seems to be dozing off as I type this. The nurse is finishing up and flushing out the lines out of his stem cells. If he is to get sick to his stomach it will be during the next few hours. This will mainly be a reaction to the preservative that the stem cells were in, it smelled like creamed corn was being flushed into Stefan.

I will try to keep you posted as to the condition he is in and if he has any reactions.




I thank each and every one of you for keeping us in your prayers and all the positive vibes we have received.
His treatment of Leukemia and the recovery from this is almost at the end of the road.

Sunday & Monday Jan 21-22, 2006

(Notice Stefan is "practicing drooling to look sick")



Updated 8am thurs.

Guests arrived all together on Sunday. Bruno & Diane,Heniek & Teresa, Basia & Peter,Suzia,Koy,Ela,Julia & Stevie. Stefan received his LAST CHEMO dose at around 1:30 p.m. So far the only reactions that he sees are the weight gain. It has creeped up to 15lbs. if not more. The water weight, they have not given Stefan any water pills yet, so everything is really sticking to him. He gets so much fluids to keep the kidneys and bladder moving often. His face hurts some he says, because all of the water gain and his face is puffy.
His counts from when he was admitted to today are as follows: His white blood count has fluctuated between 5.0 gone down to 3.8 to 5.8 todays. His platelets have gone from 121 to todays low of 65 . His hemoglobin went from 12.4 to 9.7 todays.
On Monday he received Acyclovir, the antibiotic, Vitamin K, and Mesna the drug to protect his kidneys and bladder was given today his last dose at 1pm. The experimental drug Pozaconazole he is still taking. The transplant (now scheduled for Tuesday 2-3 pm) is given in the same way a blood transfusion would be given. Through the I.V. tubing, half frozen. He was told the reactions might be mainly from the preservatives they use to freeze the stem cells when they were harvested in December. The process should take no more than 15-30 minutes for the stem cells to go in to Stefan. Since they are really cold, his body might show up with a fever and some chills till it normalizes the body temperatures again to normal.
It is 3pm Monday Stefan received 40cc of Lasix to remove some of the fluids in his system. His face is back to normal and he has gotten rid of at least 3 quarts of fluid he said. Received 20 cc of Lasix again to complete it.

If I think of anything else, I will repost and add it to this post.

Last chance for Girl Scout Cookies!

If anyone is reading this, you have until Monday, January 23rd, 2006 to get in touch with me if you want to order Girl Scout Cookies!

I have to turn in the orders at 3pm, so call or email me if you'd like to order your cookies from either Ela or Julia!

We've got Samoas (carmel and coconut), Trefoils (shortbread), All Abouts (shortbread with chocolate topping), Thin Mints (wafer covered in pepperminty chocolate), DoSiDos (oatmeal sandwich cookie with peanut butter filling), Cafe Cookies (coffee-house style, brown sugar/cinnamon crisps)*(new this year!), Lemon Coolers (vanilla-lemon crescents covered in powdered sugar), and Tagalongs (cookie topped with peanut butter, all dipped in chocolate).

Cookies are $4 a box. Quantity per box varies. Contact me if you want more details!

Call 630.495.7749 or email me at koivun@comcast.net today!

Friday visit with Dziadzia (photos)

Little Stevie (who is now a 'big boy') and I went to visit Stefan on Friday. We stayed for a little over two hours, from 11:30a till 1:50pm. Stefan was in great spirits. For starters, he was getting his final (of sixteen doses) chemo of the week. Second, he had visitors. Third, it was one of his wnuczki!

Stefan loves visiting with his grandkids, and this visit was a lot of fun. Stefan's lunch tray came just after we arrived, and he graciously shared his honeydew melon with Stevie.


After lunch, it was time to walk laps. Stefan took Stevie along for his walk. Here they are starting out...


And here they come, passing the nurses' station. Stevie wasn't too sure about all the nurses watching him walk with his Dziadzia. On subsequent laps past the station, he would cover his eyes and proclaim, "You can't see me...", much to the delight of all the nurses!


After the walk, it was time to go back to the room for a breather. Stevie cozied up to his Dziadzia and we shared a few laughs. Dziadzia tickled Stevie for a bit. Then Stevie entertained us with his witty quips. Among his funny remarks.. "Mama - Settle down, settle down." This is now what he says to you when you're speaking and he'd like to interrupt and take the floor. Instead of saying 'excuse me' he tells you to 'settle down.' Guess that's the hazard of parenting - kids tend to repeat what they hear!


Stevie told Dziadzia a few more stories, then explored the various contraptions attached to the hospital bed. Before we knew it, two hours had past and it was time to go. A few last cuddles with Dziadzia,

and we were on our way. After a quick pit stop (to prevent potty accidents on the drive home), we got on the Ike in time to crawl with the afternoon traffic, which wasn't helped any by the fact that it started sleeting. By the time we got home, sleet and rain had turned to snow. They weren't kidding about the 4-6" in the winter storm watch... Here's what the lilac bush in our front yard looked like by 11pm Friday night...


And in the rosy glow of sunrise, here's what our house and front yard looked like today...


Hope you enjoyed our little update. Stefan's looking and feeling great. Just a little tired, but that's to be expected because the chemo is physically draining. His transplant will either be late Monday afternoon or Tuesday morning. Until then, enjoy the pictures!

Stefan walking laps (photo)

Daniella sent this picture over to me, and she asked me to post it for all to see. And I quote, "See... He does do more than just sleep in the hospital."

She also sent me a video clip of him walking... actually, speed-walking right past her. I'm gonna try to figure out how to share that with you. Please be patient!

Friday Jan 20, 2006

Today at 11:00 am Stefan received his last dose of step one Chemo Busulfan. Nothing now for 24 hours. Saturday morning he will get an EKG to check out his heart. Then at 1:00pm he will get dose one of the two day Chemo. Only once a day on Saturday and then another EKG Sunday before dose 2 of the Cytoxan,(I did not spell it right last time, it is not oxytoxin). Then 24 hours nothing again and then the Transplant.
He is still doing laps around the nurses station , doing 15-20 laps after breakfast and then again after dinner. No adverse reactions, with the exception that it did make him sleepy for an hour or so and the speech was slurred also as if he had a drink or two. But of course you know he does not drink.(much). At least not in the hospital.
Today Suzia and Stevie visited him in the hospital, Stevie told the nurses here that he is 8 years old and he stuck to that story the whole time here.
I went home for a few hours and returned by bus to spend time here without having to worry about the parking fee for the van.
No snow yet as they predicted 5-8 ". We are looking out the window here and the sidewalks are still not white.

What Stefan's schedule is like....photo

On Monday when Stefan arrived in the hospital at 7 a.m. he first had his Piccline replaced with a double lumen. Then by 10:30 a.m. he was in his room 1529 East Feinberg Pavilionn. Then he was told about the procedure that he would receive that day. First was the lung preparation in form of the inhalation tube medication was breathed in for an hour by Stefan. It had a terrible taste to it I was told. This was done to prepare the lungs from getting any more bacteria then is already in his system. Then for another hour no one was allowed in or out of his room. His first round of Chemo started at 5.p.m. The next one will be at 11 p.m. They will alternate with am and pm 5 & 11. This chemo seems to be making Stefan a bit woooozy. When he got up to go to the bathroom he said his head was spinning a little bit. He had to hold on to the door and then straight to the bed. By the time this wore off it was time for the next round at 11p.m..
Besides all this chemo treatments there is also the usual4 times a day vital signs and the blood draws between the chemos.

The medications that he is getting are for anti-nausea, anti-seizure, anti-bacterial, anti-fungal, anti-viral. He also is getting Nexium "The little purple pill" for stomach upsets from all these medications. Pills to make him "go" easier because all this medications will constipate you also. He keeps asking for a pill to make his wife younger, I said all he needs is a better pair of glasses and he will see how "young" I really am.
His appetite is still good at this time, I am feeding him his favorite things that are available in this hospital cafeteria. (Not much choice) but still a choice.
This chemo will go on for 16 rounds of the first kind. Then a days rest then the next round for 2 days every 8 hours. I think that one was callen oxytoxin, ha what a name it even sounds toxic. Then 48 hours rest and the transplant will start then. When I get more information I will post it for you to read.

1-16-06 We are in the hospital

Well we got here at 7:20 am. It is now 9:15 am and they just took Stefan to get his Piccline single to be replaced with a double lumen. We were told last night that his room would be 1529. It does not have a view, just looking at another building across the street from here. More info to follow later in day.

January 16, 2006

That is the date we are looking at for admission to the hospital for Stefan. His Piccline will be replaced at 7am at that time with a double lumen (fluids and stem cells for transplant need to go in faster). Don't know what time we will get a room. As of now we were told to just wait, sorry if it takes till 2-3pm to get us into a room. But yes he will get his round of Chemo started on that day.
Till then, take care of yourselves.

Results Bone Biopsy 2006

Results came in No Leukemic cells found. Good news. They are still going to do (Jan 16) the chemo and transplant for good measure, the tell us. That is the protocol they have gone by and it works for them= (The hospital and doctors).

New Year, New bone biopsy...photo

We went out to celebrate New Years Eve. Had a great time with great company.

Well, the year started out with a bone biopsy for Stefan on Tuesday at noon. Results should be in by Thursday. Admission to hospital for last chemo (?) is temporarily still on for January, either the 16th or the 9th. Will let you know.

Stefan is feeling good, he says he is a healthy man with a disease of cancer. Other than that, he is feeling great. No restricions at the time; he was told by Dr. Frankfurt to "bulk up" for this last round, because he will lose weight again.

New Years Eve 12-31-05

Just wanted to wish all a very Happy Healthy New Years 2006.

Dr. Olga Frankfurt called and told us about the appointment on Tuesday January 3, 2006 for the Bone Biopsy to be done at noon. Plans are still in the air about the exact date for the last chemo treatment. Still January 9, 2006 date for now for chemo and transplant.

Three years ago on January 3, 2003 Stefan was having his heart bypass surgery on this date. He pulled thru on that one and he will for sure do this one too. Come on,... positive vibes we need from you all. Yes he can, yes he can, yes he can... okay, his name is not Thomas, the little choo choo train, but hey it will work for us.

Wed Dec 28, 2005

No News is Good News. Right? Well, not much to report on, other then Stefan spent the holidays at home with family. We had a great time together. To read more about it, go to: Come Sit By The Fire.

Stefan is feeling good, considering the last two visits to the E.R. all within the last two weeks. His counts are up as is his strength. Blood draw will be today and then again Friday. More testing, bone biopsy, muga scan (heart scan) and PFT (pulmonary function testing) will be done beginning of January. Then results, chemo and transplanting. Will keep you updated as to dates.

Hope you all had a very Merry Christmas, and we wish you a very Happy New Year!

WED Harvesting-12-21-05

Wednesday morning 7:30 am harvesting continued, till the blood results came in from the blood draw this morning. Well Stefan collected 6.7 million stem cells on Tuesday , so they do not need that much more to collect. They only wanted 5 million. So the harvesting stopped. Temorary port was removed and Platelets were added, his count was low. No bleeding from the port site, also was told no heavy lifting for 24 hours. (Well there goes the idea of him carrying me up the stairs) Oh nevermind that would give him a hernia also beside the bleeding in the neck area. Some of the medications were cut out not to be taken anymore for now. Blood draw will continue 2-3 times a week. Finished at the hospital in late afternoon. Flushing of his Picc-line I will continue nightly. Hopefully no pain medication needed for a while, not that he took that much (macho man). The only medication he is continuing is of course the Posaconazole. Twice daily, as he gulps that down quickly, so as to not smell it. Remember the Vanilla smell is very powerful and not a favorite of Stefan's.

His strength is slowly returning as is his smile. Now we look forward to the Holiday season with family around us again at the table.


I will continue posting if any news comes up.

Tuesday Harvesting OK

Well Tuesday 7am Stefan was at the Blood Center . Had just a little delay, they took blood first then told him he needed Platelets before harvesting was to start. Well they needed to crossmatch him and a Doctor had to see him before giving/ordering the Platelets. Okay got Platelets then started the harvesting, but wait Platelets are down again. So they stopped the harvesting and gave more Platelets again. Restarted harvesting at 1:30pm. Was told he would be connected today till at least 4:30 5:00 pm. I brought him some lunch from cafeteria when I came to get him. I dropped him off this morning and went to work downtown. Harvesting will NOT be done today all of it, Stefan will have to come back again Wednesday 7a.m. in the morning to continue harvesting stem cells. Dr. Ison the Infectious Disease Doctor stopped by and talked to him. Stefan has 5 -I.V. tubes connected to him at this moment for all the fluids going In and coming Out. He is sitting in a recliner chair with headphones on and watching TV. Catnapping in between also. It is now 2:45 pm and two more hours to go here.
*****
MORE INFO LATER*****

DITTO from Wed, same thing different day.Sun 12-18

Sunday after returning from the church Christmas Pageant to see Ela, Julia & Stevie, Stefan had his blood drawn at Suzia's house. Later that afternoon while attending Ashley's Birthday party (more on that on C.S.B.T.Fire site) Stefan received information that his counts are low and needed to be infused again. SOOOOO to the hospital we took off, but this time, since we had to be at the hospital at 6:45/7:00 am anyways, we were asked to go to Northwestern Memorial downtown. Harvesting will go on as planned for monday morning we were told, unless his counts are really tooooo low to do it. Temporary port goes in at 8:00am then the harvesting after that.

Stefan spent the night in an observation room on the second floor. Since I remember that the family waiting room on the 15th floor had a coach I spent the night over there, near where Stefans room used to be on the 15th. The observation rooms are small and only a chair to sit on for me. The time by then was midnight already. The bed would be tight for us both and since he was getting blood that meant he would be checked every 1/2 hour.

More info later in day.
************
During the night Stefan had a fever of 100.3. Harvesting did not go on today. By the time Stefan's platelets and 2 units of blood were transfused and drawn, to check his counts it was too late in the day to start the harvesting. "Those people" are there only from 7am to 3pm. This procedure takes 4-6 hours. It will be done on Tuesday 7am, we were told unless something else happens before that. Stefan DID have the temporary port put in his neck. It took a while for the bleeding to stop, (scared me also)the gauze was soaked. It finally stopped around 5pm. The nurses called twice to check up on him. I was prepared to go in again to the ER for the dressing change. I have not done one of these yet and was not prepared to do it in this case.
Stefan is very tired today and achy bones in his back. Of course the stiff neck from the port (put in under local) fits under that bill also. The clear dressing on his temporary port is "On" in such a way that the tape is pulling on his skin in a weird way. The nurse tried fixing it, but knowing Stefan you know he will not complain, he said it will only be on/in for 2 more days than it comes off anyways.

Thursday morning update - he's home

I just talked to Stefan (9:30am).
He's on his way home. Actually, he's in the car waiting to go home. Daniella ran inside the deli to get some fresh buns and whatnot.

Stefan spent the night at Lutheran General. He received one unit of platelets and two units of blood. His wbc came back - he is at .4 right now, and he is neutropenic again. Which is right on track for where his wbc should be, after chemo last week.

His platelet count had not come in at the time he checked out, so the results will be called in to Dr. Olga, who will then contact Stefan to let him know.

A fairly routine night in the progress and process of things. Platelet count went down, they called him in for a transfusion, after which they needed to keep him for observation. No other reasons to keep Stefan in the hospital this time (no fevers or other complications).

So, here we are, almost a full week after he finished his chemo last week. Stefan's energy level has pretty much bottomed out. His wbc is nearing the lowest point as well, and he is (as I said earlier) neutropenic once again - so no flowers, raw fruits or vegetables with peels, etc. Also, his immunity is most vulnerable right now, so no visitors with colds or recent live-culture immunizations, please.

As far as I know, he is still on track to go in for stem cell harvesting next week on the 19th. I haven't heard otherwise from Stefan or Daniella, so if and when Dr. Olga changes that procedure date, she'll let them know, and either Daniella or I will post any changes. But until we hear different, we're assuming he's still going in on the 19th to start harvesting.

Hopefully, last night was the only minor complication in this week preceding Wigilia. Even though Stefan will be tired, weak, and possibly still neutropenic, his intentions are still to spend Christmas Eve with the four generations of the Maca Family. And right now, that's exactly what we're planning.

Wishing you and yours Happy and Healthy Holidays.
Enjoy the magic of the season!

Just a reminder... You've only got 9 more shopping days until Christmas Eve. If you don't exchange gifts until Christmas Day... well, then you have a few hours more!

Wed Evening & Later Dec 14, 2005

Blood was drawn this morning; results of the counts came back and they are low. So that means that Stefan has to get Platelets and Blood. We are going to Lutheran General Hospital ER for the transfusion this time. It is around 5pm. Dr. Olga Frankfurt will be paged, and she'll let them know what she wants to be done while he is in the hospital. Stefan doesn't think he will be spending the night BUT you never know, hey might KEEP him like last time - overnight and then some. Will let you know of more results later.

The doctors in the E.R. saw Stefan around 7:30, then into a room around 11:45p.m. They need to keep him overnight for observation.

Well it is later, much later now - like 12:30a.m. Stefan has received one unit of platelets and first unit of blood in the E.R. When I left him, he was scheduled for a second unit of blood to be given tonight, or should I say during the night. His platelet count was down to 6 and his red cells were at 0.9 when they took blood in the E.R. at Lutheran General. He is being kept overnight (see I told you so) for observation till 7-8 a.m. I did have a bag packed this time. I am going back in the morning to pick him up.

Home free, at least for a while...photo

Stefan went home on Friday morning after finishing his last Chemo for this round at 4:00 am. He was home by 9:30 am then went to work for a while that same morning. Saturday the nurse came in to do blood work, then on Sunday he spent the afternoon with part of our grandkids downtown looking at the sights.
He is feeling good for the amount of time he has spent in hospitals the last 14-15 weeks. His 2 injections to the stomach continue every morning followed by the pills and pills and then the "dreaded yucky" Posaconazole .

.

Monday afternoon the nurse will be taking blood for the counts again. They will continue every other day till harvesting.

Meanwhile, here's two pictures from our trip downtown to see the lights.
There's Stefan, the wnuczki and me in front of the big tree in Daley Plaza.

And then there's the wnuczki, Stefan and Suzia in front of 'Cloud Gate' - otherwise known as 'The Bean' at Millenium Park.
(PS Sorry for the blurry conditions of the picture... It was cold and snowy!)

Bye for now till Dec 19 when we go for the harvesting.

Keeping busy at the Hospital

Stefan has a laptop computer this time to keep him busy with projects from work.

This stay in the hospital should go by quickly. In on Sunday out by Friday (?).

Hospital stay dates are changed

Well Stefan had his first round of Chemo on Sunday 12-04-05 afternoon. The second dose was given at 3:00 a.m. This round of Chemo is every other day twice a day. Six doses in all. We were informed that we had a little bit of information mixed up. Stefan will be going home by Friday or Saturday the latest this week after Chemo. While home he will be getting 3 injections shots daily at home to make the stem cells build up faster. Also will be on 3 different types of pills, antibacterial, antiviral and antifungal. Blood draws will be taken every other day. Don't forget that he is still taking that experimental drug Posaconazole 2 doses daily also. He will return to the hospital on the 19th of December (tentative)for harvesting the Stem Cells. This might take one or two days possibly three to collect anywhere from 5-10 million Stem Cells. Stem Cells are forced into the bloodstream from bone marrow by the Chemo & booster shots. They are collected from the blood. He will have a temporary port in the neck area put in to remove the stem cells from his blood. Port will be removed when they are done harvesting. This will be done on an Outpatient basis. He will be tested again in January 5-6, 2006. If counts are normal, port gets put in again and then the Stem Cells transplanting will start, after another round of chemo on January 9th (tentative date) . This should take one week of Chemo then Transplanting and watching him like a hawk for reactions for two weeks. This should be the END of it all, we will see.

Admitted at last on Sunday

Stefan is in room 1517. The Port for the stem cell transplant will be put in on Monday. Snowing has stopped for now, it was flurrying when we came in.

Date of Admission will be....SUN a.m.

Stefan will be admitted to the hospital on Sunday early morning. Do not know what room he will be in yet. Yes it did say Saturday, I corrected it after Dr. Franfurt called in saying it will be on Sunday morning instead.

Special Home Nursing Help

Due to conflicts with home nursing care, we have one of our own in the family to help out. Dressing needed to be changed and Karen helped out. No news on which day Stefan will be admitted to the hospital.

Got the News

We got the news of Stefans bone biopsy results on Mon 11-28-05 they are good. No more Leukemic cells. For an extra precaution though the doctors are still going ahead with the stem cell transplant. Stefan is scheduled to go into the hospital by the weeks end for his stay of 2-3 weeks. I will let you know when and what room. He is still feeling great and he is putting in quiet a few hours at work to Catch up on things there.

BONE BIOPSY 11-22-05

The bone biopsy went as planned. Dr. Frankfurt kept asking Stefan during the procedure,"Are you sure you are Okay, no pain?" Well you know Stefan , his tolerance is high and of course he had no pain. Some pressure discomfort during the bone biopsy, but we was okay. He went to work afterwards and then in the evening we had Birthday dinner celebration for Stevie's 3rd at Suzia & Jon's (Koy) house.
The results should be in by Friday, after Thanksgiving. He will be going in for the next round of Chemo in a week or so after results are in.
Stefan is feeling pretty good, getting around well. Appetite is great, taking his medicines daily. Listening to his doctors orders .

P.S. Happy Thanksgiviing to all who are reading this. Smacznego.

Tues & Wed Nov 15 & 16 2005

Had an Appointment with the ENT on Tues. Everything is Ok for now, no more appt needed. Sinus seems to be clear and free of infections.
Wed. blood draw at home will get results faxed to Dr. Frankfurt.

He is HOME Monday

Well I finally got to bring Stefan back home today. I even had Stefciu & Maddie with me to pick up Stefan from the hospital. Blood draws are scheduled daily, reports are to be faxed in to Dr. Olga daily also. There is a bone marow biopsy scheduled for Nov 22,2005.

Numbers are good today... but will he get to go home?

Daniella called me this morning to say that Stefan's wbc was up to 5.5 this morning. That's the good news.

The bad news is that they found some more leukemic cells. He was waiting to speak with Dr. Olga, to figure out his next chemo schedule.

At this time, we don't have any information on anything. We don't know if he'll be released to go home today. We don't know if they plan on starting chemo immediately (today?) or at a later time. We don't know if he'll go home before returning for chemo. We don't know how this affects his future stem cell transplant. We don't know if this is that final round of chemo he'll need before the transplant, or if there will be more just before the transplant. Right now, we don't know much of anything.

It's been a frustrating week for Stefan - and on this miserable, gray Monday morning, the news that they found more leukemic cells probably did not do much to improve his mood.

I'll post when I hear any information. Thanks for checking in, and thanks for thinking higher wbc numbers for him!

Keep those positive thoughts coming!

Well, it's Saturday. Over a week since he went in now. And Stefan's release from the hospital is within sight...

This morning, Stefan's wbc was 1.2 - which is great news! However, he's still got to stay for 24 hours observation, to make sure the wbc doesn't drop down again.

There's also a new doctor in charge of Stefan's team, Dr. Leonidas Platanias. Stefan doesn't exactly agree with this particular doctor's assessments and decisions, such as keeping him for so long. Dr. P says it's possible that Stefan will be able to go home on Monday. I just don't understand that... if his wbc is up TODAY, then 24 hours with nothing but positive changes should mean that he could go home TOMORROW. Unless this Greek doctor works off a different calendar than the rest of us? I don't know. It's very confusing. I'm gonna try to talk to him sometime soon, and see what the deal is.

Other than the change of doctors, Stefan's mood is still one of resignation. He's still aggravated about his lengthy stay. And now he's even more agitated because Dr. P said "Monday" instead of tomorrow. We'll just have to take it day by day, like we've been doing.

Daniella is on her way to go see Stefan now, so after I speak with her this evening, I'll post an update on how Stefan's feeling.

Ciao for now!
Keep those positive thoughts coming! They did the trick to boost him up over 1000! Now, everyone think "Sunday" - so he'll get to go home tomorrow!

From Chris re new Blog

Considering that Stafan's battle with Leukemia has touched many, it only would be
human to reflect on the past, perhaps to joke and maybe cover other topics.
The battle and the road to recovery will come in different shapes and forms, we are all part of it, yes?
But at the very end, all of it should be documented as part of his battle to recovery, not just medical reports, that I don't f... understand anyway.

Sample of a Medical report that I understand:
He feels like sh.t
He feels good
Yelling at Daniella, feels great.
Raedy to go fishing, SOB is back!!

My message to Stefan: "When life hands you lemons...ask for tequila and salt!"

Thinking about Mowe and you

Chris

Wed, 11/9 morning numbers... still too low

Just in case you were interested...

I'm posting Stefan's numbers from his blood cultures this morning. In parentheses, I'm putting the numbers as they were on Saturday morning - the low numbers that flagged the doctors' attention when they saw the results, which is why the nurse called Stefan to ask him to come in.

White Blood Count (wbc) - 0.3, meaning 300 (Sat 0.2, or 200)
Red Blood Count - 2.81 (Sat 2.77)
Platelets - 20, down from 25 two days ago after a transfusion (Sat 5)
Hemoglobin - 8.6 (8.7)
Hematocrit - 24.3 (Sat 24.0)

Since Saturday, when Stefan's numbers were very low, there hasn't been enough overall improvement for the doctors to be comfortable releasing him. Coupled with the fever he came with on Saturday, it's easy to understand why the oncology team is hesitant to let him go home.

Even though he went through a different chemo program the second time (just two weeks ago), I'm assuming that his wbc has to be over 1.0 (meaning 1000) for them to let him go home. So far, all his wbc has done was go up .1, drop .1, and go back up .1 - not satisfactory at all. It's got to UP from 0.3 to 1.0... a jump of 0.7.

Since blood is drawn in the mornings for testing, that's when his numbers have to be up in order for the doctors to see he's making progress, at which point they can give the order for him to go home. He's already staying tonight, through Thursday. Dr. Olga did not sound very confident that Stefan's wbc would even be up over 1.0 by Friday morning, but that's what we're hoping for. Of course, the team could very easily decide to keep him for 24 hours after his wbc goes up to/past 1.0, just to make sure that it doesn't drop again.

This is the same fight he had last time... why his stay at NMH lasted 4 weeks instead of just over 3. His wbc was fluctuating, instead of steadily increasing. Well, last time I asked for everyone to think 1000, and the power of positive thoughts brought his numbers up a lot quicker than he was doing on his own.

So I'm asking again... Positive thoughts, everyone! Send them Stefan's way! Think 1000! Think nice weather! Think he's home again! Think up, Up, UP! (Okay, maybe that sounds a bit perverted...) BUT... Whatever your positive thoughts are, send some good mojo up his way. Lord knows he needs it...

Thanks for reading. Thanks for keeping him in your prayers. Thanks for your support. Please send positive, happy thoughts his way, as often as you can... the more, the merrier!