Still some variables

But first, we had a good Christmas.  Michael and I were in Texas.  We went to a nearby Methodist Church for a candlelight service on Christmas Eve, and then on Christmas Day, we went to Galveston again to the beach.  We did discover that, going to the beach when it is in the 40's and cloudy and extremely windy is not as enjoyable as when it is sunny and in the 70's with a light breeze.  So our beach time was very limited, but we read in the car by the beach and enjoyed the view.  But, we are already looking forward to going again, maybe when it is a bit warmer.  Mark and Melissa were with family at home.  We talked with them several times and Mark sent some video on the phone.
Sunday, we went to cousin Kris's and had a Christmas get together with Kris and his girlfriend Tonya (who took me the week before to a fabulous performance of the Nutcracker by the Houston Ballet--wow, quite a girl's night out!)  Sunday, we also watched a great KC Chiefs game and finally we're in the playoffs.
About the variables.  We may have to wait longer for the transplant.  The Radiologist said, even if it is working well, the tumor may not show the response right away, so it looks like if that is the case we would have to wait longer.
Also, it still may yet be Michael's own stem cells for the transplant.  So there is a lot to work out yet between the doctors.  Michael is tolerating the Radiation, mainly very tired at times.
Hope everyone continues to have a good Holiday Season.  Thanks for all the prayers.

Wishing a Merry Christmas to all

We saw the Hematologist, Dr Fowler, the day after we saw the Transplant doctor.  We really liked him and he also spent a lot of time with us and answered lots of our questions.  
He would like to do the Stem Cell Transplant as soon as possible.  It looks like the PET scan will be on the second or third week of January and if that shows the radiation working well, then the transplant can start.
Thanks to everyone for all of the support and prayers through this long year.  It has made all of the difference.
And wishing everyone a Merry Christmas and a Happy Holiday Season.

Met with Transplant Doctor today

We met with Dr Bishar today.  He is very nice, but found out some things we were not expecting.  His opinion at this time will be for a transplant not with Michael's own cells, but an unrelated donor.  
This is a higher risk option, there is more risk of side effects so instead of staying around the transplant center for 30 days as with his own cells, it will mean he will have to stay 100 days to watch for problems.
However, the doctor feels that this option would provide a better chance of staying in remission.
The next step after finishing the radiation (should end about Jan 5), is to get a PET scan in about late January.  If the tumor has responded well to the radiation, then he can start the process.  So we don't really know when this will happen.
Also, we see the Hematologist tomorrow, so we will see what his opinion is.  
Thank you for all of your prayers.

Down to the Gulf

First a quick update on the week.  Michael's cold and cough are resolving.   And, with today's treatment, he is halfway through the radiation.   At this point, the only side effect is being very tired at times, although most days he does make it to the fitness room.
The Proton Radiation Center gave a really good presentation mid week to anyone interested in the behind the scenes at the center.  For example the treatment room Michael gets his radiation is actually the top floor of a 3 story machine, the rest is underground.  Anyway, lots of interesting info on the process from when the protons are divided and then how it works on the cells, especially with less damage.
Next week, hopefully by Wednesday, we will find out the timing of the transplant and where.
Now about the Gulf, yesterday, Michael and I drove down to Galveston.  It is about an hour from here.  There was a lot of traffic getting in and out of Houston, but once we were in Galveston, it was great.  The weather was perfect--it was in the 70's, of course the water was a cool, but that gave us pretty much a private beach.  There is nothing like the sand under your feet with the tide going in and out.  It was really nice to get out of town and relax in the sun.

Thanks for your prayers, especially as we are waiting to find out the path we will be on.  Sending a picture from yesterday.

Ready to start the new week

Nice to have the weekend off from treatments.  We went to cousin Kris's house today, where we watched the Chief's game.  For any Chief's fans it was a tough game to watch, but it was good to get out.  Michael's cold has a lingering cough, but does seem to be getting better slowly.  
We see the Radiologist tomorrow and then the Transplant Team next week.  So hopefully by next week, we will know when and where the transplant will be.
Thank you for your prayers.

5 Down and 20 to Go

We saw Dr Cox yesterday, however they were way behind, so our visit was pretty brief. But we did learn we have a visit with two doctors on the Transplant Team and the Transplant Coordinator in two weeks.  So we will be able to be closer to finding out when the transplant will occur.  It does sound more like the transplant will be in Houston, but we will see.
Michael has had a bit of a cold/sore throat, which does seem to be getting better.  Other than that he is doing well, the main effect is being tired, but part of that is the cold.
Thank you for your support and prayers.

Getting settled and one more new address

We probably won't have a white Christmas, but we do have 2 Christmas Trees.  We had brought a few decorations down with us, but it didn't look quite right, so I went and got a small tree yesterday and we put it up.  Then we got one in the mail today from Grandma Kay and Grandpa Jay and we really like having two!  Thanks!
The weather down here is beautiful, it was close to 80 degrees today (we hear it is a bit cooler up North).  Michael went to the outdoor pool this afternoon, but I guess the water felt like ice.  But, we still enjoy the view of the pool from the room.
Tomorrow, Michael will watch the Chiefs game with his cousin, Kris.
Our new address:
6301  Almeda  Rd
Apt 922
Houston, TX
77021
Thanks for your prayers.

First Treatment in Texas Today

Michael says thanks to the work crew who got our house ready for Christmas!  Michael and I flew back to Houston last night and cousin Kris picked us up and got us to our apartment.  We found it on the MD Anderson website and to say this place is great, doesn't do it justice and it even costs less.  It will be a very comfortable place to be.  Mark and our good friend, John Owings, are driving down our stuff for the apartment.  They will be here tomorrow.  Thank you for the marathon driving!
The first Proton Radiation treatment was today.  At this point he will be done in early January.  Because this is more targeted radiation, hopefully there will be less side effects and it is anticipated that he will tolerate it pretty well during the treatment.  We are praying for minimal long term side effects due to the proximity to his heart.


For those interested in the science aspect, I will include some details on the Proton Radiation that we have been learning about.  Briefly, Hydrogen atoms are separated and the protons from the separation are injected through a vacuum tube into a linear accelerator, where the volts of energy are increased which allows the protons to be placed at the depth needed.  At maximum energy the proton beam travels at 125,000 miles/second (2/3 the speed of light).   The room is huge where the process of separation and acceleration occurs and as the protons are accelerated through the tubing they typically travel 313,00 miles.  This 190 ton machine is accurate to within a human hair width.
This point where the highest energy release occurs is called the "Bragg Peak".  The doctor can designate where this peak will be and the proton beams conform to the 3D shape of the tumor. 


We still don't know when or where the Stem Cell Transplant will be, but for now we will be mainly focused on the Radiation.  Thank you so much for your support and prayers!!   

Thank you Christmas Crew

With such short notice and with being a Holiday weekend, we appreciate so much our family and friends that were able  to help decorate the tree and house and wrap packages.  It looks really great and Michael will be very surprised!!  He should be home Monday and off to Texas on Tuesday with his first treatment on Wednesday is the plan.
Thank you Grandma Betty, Nancy, John, Sherry, Tracey and Vicki!!!

Home for Thanksgiving + Surprise for Michael

Hello dear friends!  -this is Melissa writing -
Tuesday was a very good and busy day.  Brenda and Michael met with the proton radiation doctor and have decided to move forward with the new treatment.  Michael will start therapy preparations next Wednesday at MD Anderson, and treatment will hopefully be done on January 6, 2010, to be followed with chemo therapy. Cousin Kris helped them scout out long-term hotel rooms and got them to the airport for an evening flight back to KC.  Since they will be now living in Houston for several weeks, Melissa and Mark went up to Rochester to clear out their long-term hotel room (KC to Rochester back to KC in one day!)

We're very happy to be together for Thanksgiving, and we wish a very happy holiday to all of our friends and family.  We are so blessed to have you all.  We are so thankful for you.

THE BIG SURPRISE: Michael wanted to be done with treatment and home for Christmas, but the new treatment schedule won't allow for this, SO we wanted to have the house decorated for Christmas before he leaves for Houston.  We also have to sort the items from the Rochester hotel-room and get them packed for the Houston trip.  ALSO, Mike will be out of the house this weekend visiting friends in Ames, so we can get a lot done without him knowing :)   We've got a lot to do in a small amount of time, so we're opening our house to anyone who can help out!

What: Deck the Hills - Open House
When: This Saturday, 11/27, from 1-5pm
Who: Anyone!
Where: Our house, 27006 Herring Rd., Greenwood, MO 64034
What: Christmas decorating, Houston packing, General housework help, and some chatting :)

We'll have hot cocoa and apple cider.  We'd love to see you there.  Oh, and don't tell Mike, it's a secret!

RVSP with a comment below, or a text/call to me at 816-807-6024, or just show up :)

We like Texas!!

A lot has happened in the last few days.  Prior to leaving Rochester, James, Michael's friend from Iowa State came up and they had a road trip to Minneapolis.  Then Michael and I flew up to Minneapolis the next day on the way to Houston.  

We got into Houston last night (we knew it was big, but didn't know it was the fourth largest city in the country--but we believe it now).  Kris picked us up last night at the airport and got us to our hotel and to our appointment today, as well as some other runninge for us--Thank you Kris!!

Today, we saw Dr Cox.  We really like him.  He said he has treated 30+ patients with Lymphoma with similar tumors resistant to chemo.  We are proceeding with the process to begin the Proton Radiation.  He feels there is a very good chance the tumor will resolve with the Radiation.  Even though it is Proton as opposed to the conventional Radiation, there will still be a risk of damage to his heart, so we welcome your prayers.  
Also, he will still need a Stem Cell Transplant after the Radiation,as Lymphoma is a systemic disease.  We are not sure when the transplant will happen, nor where--it could be Rochester or Texas.  So Michael has a long way to go, but the news today was good.
The first step today after the decision to proceed was to start the simulation that will map out the angles and exact areas to be treated.  Hopefully, he will start on December 1, which will be one week from tomorrow.  Dr Cox said Michael could go home until it begins, so Melissa got us on a flight HOME tomorrow evening.  Before we go, Kris will help us check up some long term housing options for when we come back.
Thanks so much for following with us and thanks so much for your prayers.
Wishing all of you a Happy Thanksgiving.

Plans for Houston

Just a quick update on today.  We have an appointment at the Proton Radiation Center on Monday afternoon.  Melissa is closing in on the best flights for us and a hotel for a couple of days.  Then Michael's cousin, Kris, who lives in the Houston area will pick us up from the airport on Sunday evening and has volunteered to be our chauffeur on Monday to get us to the appointment.  He doesn't know it yet, but I have a list of places to check out--a few hotels around MD Anderson as well as to find a health food store near the Center in case we decide to stay.
As well as talking to the Radiologist, we are working to get an appointment with the Transplant Team in Houston, so we can see how this will work together.
Thank for for your prayers, they really help!!  

No change on PET scan

We started out early today, the PET scan starting at 6:15 this AM.  We talked to Dr Colgan this afternoon and the tumor by Michael's heart has not changed with this new chemo.  For the Stem Cell Transplant to begin, they needed the tumor to shrink considerably.  The recommendation from Mayo is to begin a really harsh chemo.
However....going back since about 12 days we have been looking into Proton Radiation (in the event the chemo did not work or for possibly a treatment option after the transplant).  A few centers, like Linda Loma and M D Anderson have been using it.  Benefits are that it is much more accurate and it  causes less damage to surrounding tissue--like Michael's heart.
We had previously talked with Dr Colgan about this and had sent his records down to M D Anderson in Houston last week.  They had told us he was a candidate earlier in the week, but we wanted to see if the tumor would go down with the chemo.
We plan to go to Houston on Monday to learn more about their program to see if adding this this would benefit Michael.  Melissa will be looking into making arrangements for a flight for us.
An interesting note this morning while I was waiting for Michael, on the news I heard that Mayo will be putting in a Proton Radiation Center on their grounds, but it will be a few years before that is done.  So they definitely see promise in this as treatment.
While this is a promising tool for cancer treatment.  The primary concern for us is "is this the right treatment now for Michael?"  We appreciate all of your concern and all of your prayers as we are making these decisions.  Thank you!!

Still waiting for the PET scan

Wednesday will be the day when Michael gets the PET scan and we should know by Wednesday afternoon the results. Today Michael's labs were lower, especially his white blood counts, but not unexpected.
Michael feels pretty good.  But, the hardest thing is not knowing what path he will be on.  But in the next few days we will hopefully have the answers.
We have been doing lots of research especially on diet.  Michael has made a lot of healthy changes, but he's still searching for the best combination.
We did get good news on the health insurance today.  It won't be changing (if it does change) until February 1.
Thank you so much for your continued concern and prayers.

Waiting

Labs today were pretty good.  Michael continues to feel better and we will try the new Pizza place tonight down the road (but we will still do some juicing later tonight).  Hopefully,everything will be quiet and not much new until next week.
It's a little cooler here in Minnesota, but still quite beautiful. 
Thank you for your prayers!!

Almost through the first week of chemo

Michael has tolerated this chemo pretty well and is better each day.  His labs today were okay.  Next Wednesday is when we get the PET scan and that will determine where we go from here.  We will talk with Dr Colgan the same day.  However, we are hoping to talk to him this week about additional options.  So we really appreciate your prayers as we are waiting and as we make decisions during this time.
Something else we would appreciate prayers on is that our health insurance may be changing in the next few weeks.  I have been spent many hours on this issue, much of that with Mayo about the potential ramifications and we are praying that this will not effect his treatment.
Need to close, got some juicing to do--spinach, beets, carrot, apple and broccoli.
Thanks so much for your prayers.  

Out of the hospital

Michael finished his chemo today and is back to the suite.  He tolerated the chemo pretty well.  Each time gets a little harder, but he doesn't complain.  Michael is trying to catch up on sleep he did not get in the hospital.  He will get a shot tomorrow to help his white blood cells recover.  Then the plan is to watch his blood counts over the next few weeks.  
Michael will get a PET scan on November 17, and that will determine if more chemo or on with the Stem Cell Transplant.
Tomorrow, Melissa will come up to visit for the weekend.  Mark is recovering well from his surgery.  He saw the surgeon this week and all reports from the surgery were good.
This was a hard week as this was not what we were hoping and praying for, and it sounded like we were so close to the transplant, but he was not ready for it. It helps so much to know your thoughts and prayers are with us as we continue forward.  Thank you for continuing to follow us on this journey.

more chemo

Not what we were hoping to hear today, but Michael will need more chemo prior to the Stem Cell Transplant.  The tumor by the heart had not changed in size from the last chemo, but it did not grow larger.  So now he is in the hospital about ready to begin the infusion.  Michael will be in the hospital for two nights for the infusion.  They are using different meds.  He will have one round and then in two weeks he will have another PET scan.  At this point there are three options:  1) good response and proceed with the transplant, 2) fairly good response and he will get one more round of this chemo and then the transplant, 3) not a good response and then he will get a very heavy round of a different chemo combination prior to the transplant.  
Michael had tentatively signed up for a couple of classes at Iowa State in the Spring, but that looks like it will be the Summer Semester now.
Thank you in advance for the prayers for Michael that this will be the chemo that will be the one for him, that his heart is protected and that his Neutraphils and Lymphocytes bounce back quickly.
Thank you so much for your concern and your prayers.

Piano Solo

If you have never been to Mayo, there is a beautiful open space where many major halls converge, the ceilings are high and even appear higher as there is a balcony over it with more halls.  One side is mainly windows and there is a huge figure of a man who is "reaching up to God for healing".  By the windows is a baby grand piano by which thousands of people will pass by daily on their way to various appointments.  Today Michael was finishing up a test and I went to the pharmacy.  On the way out to meet Michael--there he was on the piano playing.  He played many heartfelt pieces beautifully.  One of the songs he played was "Alleluiah".  Wish you could have been there!!
Today, Michael had nine appointments/tests.  It was a long day that included a bone marrow biopsy (with anesthesia), CT scans, EKG and chest x-ray.  The chest x-ray looked good, but we may have to wait until Tuesday before we know about the CT and PET scans, which are more definitive.  His blood work today was pretty good, except the Lymphocytes are not bouncing back yet.
We met with a member of the Transplant Team today and began the process of education on the process, more on that later.
Mark is doing well and on target to get home tomorrow.
More tests for Michael tomorrow, but not as many.  Thank you so much for all of your concern and prayers.

Mark's surgery went well

Mark's surgery is done and everything is looking good.  Hopefully, home by Friday.  Thanks to all at home for your help.  And thank you for all of your prayers.

Michael's Post

Don't miss Michael's post from earlier today!!!

labs today and a tentative schedule

We enjoyed Mark and Melissa's (and Mae dog's) visit over the weekend.  Michael slept a lot, but we went out to The Restaurant, and had a very nice dinner and a chance to get caught up.  Michael had met one of the owners of The Restaurant, Chris, when we were at the Gift of Life House.  Michael was working with Chris on a project to increase the availability of meals, fresh fruits and vegetables that could be provided to the Gift of Life House. He is still working on that, but so far it is in the planning stages, but a very worthwhile and needed program.  But, at least we know of a really good place to eat.

Mark's prostate surgery is this Wednesday, everything at this time looks like it should go smoothly, and hopefully he will be home in 1-2 days.  

Michael's labs today were pretty good, but still could be dropping in the next few days, so he will have to be careful to avoid infection, that includes no fresh fruit or vegetables.  The white count is down, which is expected and the Lymphocytes are coming up which is what we want to see.

Then today, Michael was given a print out of what and when his tests will be.  The tests we are really waiting on are the CTs and PET scan.  At this point the CT will be this Thursday and the PET will be Monday.  These will determine the course of treatment for now.  The PET will probably be the most definitive (and we should know the results by next Tuesday).   An excellent response to the chemo is what we are praying for and that will mean he will proceed with the transplant.  The schedule Michael got today is for 35 tests and or meetings with doctors, etc in the next weeks.  I think we need a bigger calendar!

We are finally getting settled in our new place and I am able to find almost everything.  This suite is great for Michael and for me, in that he has his own room and I have my own kitchen!  I need to get going on some tacos for dinner.

Thank you so much for your concern and your prayers.  We really appreciate them so much this week, with Mark's surgery and as we wait for the test results for Michael.  Thank you!!!!

Hello Everybody

I first wanted to thank everyone for all of the love and support they’ve given me.  I am grateful that so many people are surrounding me with warm thoughts and powerful prayers.  It motivates me that much more to fight hard and keep going.  I was really looking forward to going back to school and getting into the swing of things this Fall, but of course that’s not the way things turned out.  I’m ok with that and in fact I am very optimistic and truly without fear.

The problem is I have no idea whether or not the treatment is actually working.  It’s quite a strange feeling being in the dark about something so important.  It’s only been a few weeks but it feels like I’m perpetually suspended on the edge.  On one hand, the cancer is gone and the transplant is a complete success so I get right back into classes following my dreams and aspirations, on the other hand, the treatment doesn’t work and I must continue down a dark, unknown road.  As a very sane person, it can almost be enough to drive you crazy. 

The two sides could not be any more different, any more extreme.  Not knowing which path I’m currently on has had an interesting effect on me.  I feel like I’ve never had such little concern about life than I have now.  But somehow I also feel like I’ve never cared more.  I feel like this perspective has given me so much insight and knowledge about life, something that most people don’t understand or appreciate until far later on in their lives.  It has very much had a profound impact on who I am.

I get the tests results in about a week’s time.  Hopefully the scan comes back clean and I can start the stem cell transplant.  I might even be able to go to school in January if everything goes well.  If the scan shows still shows signs of cancer, I’ll almost certainly get more chemotherapy and maybe some alternative treatment.  I’m so fortunate to have my mother here with me, guiding and supporting me every single step of the way.  She’s made this entire situation bearable.  We’re hoping for the best this week, but whatever happens, I’m 100 percent ready for it.

Thanks again.  And keep the prayers coming!!!!

Transplant Team in Contact

We have moved into our new home and it is quite comfortable, hopefully this will be the last move while in Rochester.  Mark and Melissa are coming up for a visit over the weekend--that will be nice!  Michael is doing well, his labs today are pretty good, but will be dropping in the next few days.
The Transplant Team talked with Michael yesterday and are ready to start moving quickly on the transplant, depending on the PET or CT scans which could be as early as a week from now.
We will probably find out on Monday when the scans will take place.
If the tumor has responded well, the transplant process will begin.  If not, it will be more chemo or a change in chemo.  We're ready for the transplant!!
Thank your for your continued prayers for Michael.

NEW ADDRESS!!

Michael got out of the hospital late last evening.  He tolerated the chemo well.  His main side effect is being very tired.  We caught the last half of the Chiefs game today, a good game until the end.  Tomorrow, he will start having the labs drawn and if like last time the really low point for his white counts will be in about a week.
This Tuesday and Wednesday we will be moving. The Gift of Life House is such a beautiful place to stay and everyone has been so nice, but with the group kitchen, it is quite time consuming and hard on my knees--avoiding more knee surgery now sounds like a good plan.
Where we will be moving to is:


  The Town Place Suites, 2829 43rd St NW, Rochester, MN 55901.


In addition to having our own kitchen, Michael will have his own bedroom, and both of these as well as being a really nice change, will make it easier to keep him isolated when his counts are low.  It even will have cable!
We appreciate and we thank you for every one of your prayers!! 

2nd round of chemo to start anytime

Michael's blood counts were okay to start chemo today.  His Neutrophils (which fight infection) are at 1/4 of what they were at the start of the last round.  That is expected, but we would appreciate your specific prayers as we had requested last time.  The prayers we would appreciate are for his Neutrophils and Lymphocytes to bounce back quickly from the chemo, his heart to stay strong and the chemo to blast the tumor by his heart away.
We saw Dr Colgan, the Hematologist, today and he said Michael is on target to get a PET scan about three weeks from now.  If the tumor has responded well, he will proceed with testing prior to the Stem Cell Transplant.  If not the response desired, then he will get more chemo before the Transplant.
Michael is in the hospital like last time, as it is a long regimen of infusion.  He should get out Saturday night or Sunday morning.  For some reason, Michael doesn't like hospital food, so he had Arby's instead.  He's got a laptop and cable TV so he's pretty set.  The last round of chemo he tolerated well; he was mainly tired.
Thank you so much for every prayer, we appreciate so much your support!!

Going in the right direction

Michael's counts are going up.  His Neutrophils are edging up as are his Lymphocytes.  If this continues, he will get his second round of chemo this Thursday. 

Michael is doing well, mainly tired at times.  This last weekend, we went to the Farmer's Market, which is only minutes from us, and loaded up on lots of veggies for juicing.  Then Saturday evening we saw the move Wall Street.

Sunday, we went to Applebee's and watched the Chief's game.  Not the best game, but it was good to see the Chief's.  The weather up here has still been very nice--a beautiful Indian Summer.

Tonight, the Our Lady of Lourdes High School brought in a fabulous pot luck for everyone at the Gift of Life House.  It was a nice break for everyone here.

Thank you all for your prayers.

Labs good today

The Neutrophils came back up to 1300 today, which takes Michael out of isolation.  His Lymphocytes are slowly creeping back as well.  Michael still has to be careful, but we were able to go to Applebee's tonight.  Since we are in Minnesota every TV at Applebee's had the game with the Twins and Yankees, but when we left it didn't look good for the Twins.
Michael will get labwork again on Monday and Thursday.  As far as we know, he will get his next round of chemo starting next Thursday if his labs continue to improve.  Michael has been doing light work outs, T'ai Chi (a technique of exercise and meditation), hours on his keyboarding and computer and he's been working on a project (more on that later).
One of my goals was to give Michael a lot of time to himself, but I have found that has not been a problem as the routine for shopping, cleaning and meal preparation is quite time consuming here.  I am always thinking I will get more accomplished the next day, and one of these days it is bound to happen.
One of the hard things about living here is there are no TVs in the rooms--only about 5 for the whole house of about 100 people--ouch. But if we are lucky we can find one at 10:00, like we were able to tonight and watch the Daily Show and the Colbert Report, a good way to relax at the end of a long day.
Hopefully, nothing new here until Monday.  Hoping all of you have a good weekend.
Thank you so much for your concern and for all of your prayers.

Neutrophils down

Michael had labs today.  The last time was Thursday and the Neutrophils were hit really hard.  We didn't expect they would drop that much today.  But, the nurse was not.  They went from 5700 to 350.  But, hopefully the Neulasta shot will be kicking in soon.  Earlier today he was out without a mask, but now he has to wear one when he is out to protect him from infection.  The Lymphocytes are showing a slight increase which is good.  Michael has been feeling good and has been on his laptop and keyboard most of the evening.  Thank you so much for your prayers and we thank you so much for those who are praying special prayers for the chemo to blast the tumor away, for his heart to be protected and for the Neutrophils and Lymphocytes to bounce back quickly and to stay strong.  Thank you!!

Room 62

I forgot to add the room number to the address--we're in 62.

our address

Forgot to include our new address:
Gift of Life Transplant House
705 Second St, SW
Rochester, MN
55902

New Home

Yesterday Mark went back to Greenwood, his doctor today  in KC had the same impression as the doctor at Mayo, so that is good.  Michael and I moved into the Gift of Life House.  The American Cancer Society helps sponsor it, so everyone here gets a reduced rate.  It is a house with about 48 guest rooms.  We have the run of the house and it is a beautiful old home with many interesting rooms.  Everyone is very nice and so many steps are taken to help us feel at home here.  We are assigned a kitchen and I can make our meals.  Since everyone at the house has either received or will receive a transplant, there is a huge focus on cleanliness.  For anyone who watches "Monk", you will have an idea about the obsession on cleanliness that is maintained here, and like Monk, Michael and I kicked it up a few notches.
Michael had his labs today and they are holding.  His counts will probably be dropping in the next week.  He's doing well, mainly very tired and sleeping a lot.  Last night he spent a few hours writing in a really quiet out of the way spot.  Tonight, I have that place and he is sleeping.
Melissa is in San Francisco and tomorrow, she and her friend, Jackie, will begin their 3day Susan G Komen walk for Breast Cancer, 60 miles over 3 days.
Thank you for your prayers.

Mark to Mayo

Mark came up to Rochester last night, but not just to visit.  He had a second opinion as he was diagnosed with Prostate Cancer recently.   The doctors feel it has been caught early and is considered low grade.  At Mayo the recommendation is surgery and Mark will see his doctor in KC later in the week.  They feel it is very likely this is all of the treatment he will ever need.  We are relieved with this report from the doctor.

1st round of chemo done

Michael's infusion was done last night and we got back to the hotel about 9:00 PM.  He went into the hospital on Thursday and it was finished last evening (Saturday).  He it tolerated well, it was just a long cycle of getting all of the meds in and some had long infusion times.  The doctors had done some tests to check his heart during the chemo since he had the pericarditis in May, and all the tests were normal.
The nurse showed us Michael's labs before we went home.  The Lymphocytes had gone down, but the Neurtrophils had increased by 3X.  The Neutophils will go down due to the chemo cycle, but it was very encouraging that it had gone up so much--keep the prayers coming!!  
We thank you so much for the specific prayers for the Lymphocytes and Neutophils to bounce back quickly and to stay strong and for the chemo to blast the tumor away.  And now one more specific prayer request, since the tumor is so close to the heart and Michael had the pericarditis in May, if you can pray for his heart to stay strong.
Today,  Michael has been doing pretty well.  He had a light workout and enjoyed following the Chiefs victory.  Tomorrow, he gets his shot of Neulasta and labs.  His counts may not drop for another few days on this cycle, but he will get lab Monday and Thursday at least for now, so we can tell how he is tolerating the chemo.
I got a little bit of a mild cold yesterday, so I got a separate room at the hotel to decrease the chance Michael would get sick.  So I am limiting contact and using good handwashing and tons of sanitizer when I am around him.
It finally dried out up here after several  days of heavy rain (and we finally got all of our clothes dried out).  The weather in  Rochester from what we hear is warmer than in KC and many of the trees up here are quite beautiful.
Thank you so much for all of your prayers!!

1st round of chemo infusing

We got to Rochester Hospital this morning for lab and admitted to his room at 11 AM and the chemo just started infusing at about 5:30 PM.  
Back to yesterday.  The plan is that Michael will get 2 rounds of chemo, now and in about 3 weeks.  In about 6 weeks they will do another PET Scan.  If the tumor is not shrinking the way they want they will change chemo drugs.  If it is shrinking halfway, he may get more chemo.  If it shows a good response with the PET Scan the Stem Cell Transplant will occur. (I think yesterday I called it a Bone Marrow Transplant.)   
Anyway, Dr Colgan thinks there is a good chance he will respond well to the chemo because the 1st tumor did.  This chemo is a combination of 4 drugs, all are different except one.
The stem cells will be his own, that are taken after the tumor in his mediastinum has shown a good response.  He will have a central line that the stem cells will be taken from his blood and then will be frozen.  That could take 1-4 days.  Then the MAJOR chemo begins which is about 3-4 times what is normal, then about 6 days later he will receive his stem cells.
Michael will stay at least 4-6 weeks in Mayo after the transplant, hopefully he will leave the hospital days after the transplant and will stay in the Gift of Life House (for Transplant patients).  He will have to go back every 1-2 days to be checked.
Presently, Michael and I are staying at the Microtel Motel which has been quite comfortable, but we are working on the long term housing arrangements.  Some of the housing is reduced and some is free.  Just prior to leaving, I got a call from the insurance company and part of our plan includes some assistance with lodging and food.  We may have to move a few times, but we figure we will just be flexible.  Mark and Melissa are at home for now and will later be back and forth to Mayo, more on that next week.
So many people have asked how they can help.  We have a huge request,  we have some specific prayer requests.  The sooner Michael has a good response from the chemo, the sooner the transplant takes place and that will increase his chances of success.  Also, since he just ended his other chemo in May, his white blood count, specifically neutrophils and lymphocytes are on the low normal side.  These protect him against infection, also will increase the chances of success on the transplant. 
We are so thankful for every prayer and would especially appreciate prayers for the chemo to totally blast the tumor away and that his neutrophils and lymphocytes bounce back quickly and strongly after the chemo.
A note on Michael, so far he is tolerating the chemo well, it's only been an hour, but that is good.  He has a good appetite and is watching Shreck 2 on the movie channel.  For this chemo he will have to stay in the hospital until Saturday.   This is not due to expected problems, but due to the fact that it is basically a continuous infusion.  In the weeks after he will be watched closely for decreases in platelets, neutrophils and lymphocytes.
We are thankful Grandma Kay's knee surgery went well today (thank you Grandpa Jay).  Mark and Melissa are visiting with her now.
Thank you again for all of your prayers.

Met with doctors today, chemo tomorrow

I had hoped to give a longer update today, but that will have to wait until tomorrow.  We had a long day today; we met with a doctor on the Bone Marrow Transplant Team, Dr Inwards, and then with the Hematologist, Dr Colgan who has been following Michael from the beginning.  There was also lab and we met with a coordinator for long term housing options.  Michael and I decided we would have to embrace our time here and learn how to not just survive, but to thrive.  So to help achieve that after a long day at Mayo, we went to Best Buy and got a keyboard (that Michael can use with headphones in the hotel) and some music books at a Music Store.  He spent most of the evening on the keyboard.  Tomorrow we go back to Mayo to start chemo again prior to the Transplant...more on that tomorrow (I hope).   Thank you for your prayers.

Preparations for a Journey

We are starting on a long journey with our son, Michael.  Michael had just started the semester at Iowa State in Ames.  He was so thrilled to be back and start taking his life back after having to miss out on the Spring Semester due to his previous treatment for Lymphoma.  But things changed with his check up at Mayo on September 2.  A mass was seen on the PET Scan and a biopsy followed the next day.  Five days later we found out that he will first have chemo to shrink the tumor in his mediastinum (in the space by his heart).  Then he will start the Bone Marrow Transplant.  That  process will also involve more chemo prior to the transplant of his own bone marrow. 
It will  be a long process with likely many bumps on the road.  We do not know when the process will start, nor how long it will take.  We have many questions and we have to wait for now to find the answers.
At this time it looks like the transplant will be at Mayo.   Michael and I (Brenda) will be living up there for several months.  Mark and Melissa will be at home working, holding down the home front and hopefully coming up for visits and for a week here and there.
While we have many questions unanswered, we know that we have many prayers coming our way already.   It is truly a help to us and we thank you.  And we can't thank you enough for all of those who have been such a big support from earlier in the year as well.  Thank all of you for helping "Michael be a Miracle".