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My Anaplastic Large-Cell Lymphoma Story
Or, This Is How I'm Going To Beat Cancer
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27th-Jun-2009 06:23 pm - He fought the good fight

Ben Kottwitz fought a good fight and has now finished that fight and is resting in the gentle arms of his loving Savior.  Ben died just before midnight last night at Baylor Hospital surrounded by family, elders, and deacons of the church.  We grieve, but not as those without hope, for ours is an eternal hope given by our eternal God.
There will be a memorial service on Monday morning at 10:30 at our church, Redeemer Presbyterian located at 7820 Silverado Trail, McKinney 75070.  You may view his online obituary at www.TJMfuneral.com

Ben said he would beat cancer and that he did; way to go Ben!  I am so proud of the man he was and that I had the privilege of being his wife.  Our six years together was filled with the happiest times in my life; I am a better woman for having his love.  My heart misses him with every second that goes by.  Ben will go on in Zander and Lana; what a treasure he left the world!

Thank you again to each and every one of you who have loved us and supported us this year and throughout our lives.  Please know how much we appreciate everything you have done.

God bless you all,

Ben is still smiing his beautiful smile rockin' his music with the angels.  Rock on, My perfect match!


26th-Jun-2009 07:11 pm - June 26, 2009
This morning, I was able to lie down in the hospital bed with my love.  I told him that I would do everything I could to make him proud of me and that he must be my angel when he gets to heaven. 
His lung support is on 100%; they cannot go down on it, because he cannot tolerate it.  His kidneys have shut down and he is on dialysis to bypass them.  His blood pressure and body temperature are dropping.  His lungs have fluid in them.  His body is retaining more fluid than can be pulled off him.  The doctors are giving him a day or two to see if there can possibly be any improvement.  Then we will have to turn off all the machines and the Lord will carry him to heaven.  The doctors say that only a miracle would save him now.  His family is here and is spending time with him.  We are in a nightmare.  Our faith is the only way we are going to make it.   
Please continue praying.
24th-Jun-2009 06:03 am - June 24, 2009
Yesterday was, let's just say a day I was glad to see be over!  Once I got to the hospital, the nurse informed me that the lab had assumed Ben's infected blood culture was taken from the port in his chest.  However, there was a mixup and the nurse said that she had taken those blood draws from Ben's ART line which gives them the constant, more accurate reading of his blood pressure.  Here's the part that drove me nuts:  the nurse explained that Dr. Fay wanted to wait and let the surgeon, Dr. Smith decide what to do from this point.  What?  "What is there to decide?" I asked.  "Well, whether or not they will continue with the removal of the port surgery or what."  I went around and around with the new-to-us nurse trying to understand why we would wait for the surgeon to cancel the surgery and tell a nurse to take out the infected line and put in a new one.  And, why they would consider doing an surgery he didn't need.  At 3pm, when the surgeon called, sure enough he said that very thing.  A resident came in and could not get the new ART line in after that; then she sent her "upper" to do it.  When I last spoke to the nurse at 9pm, the new line was in and the infected one had NOT been take out yet.  So, because of all this, the yeast infected line sat in his arm another day. 
His white count is at 1.0.  During the ART line procedure last night, his blood pressure dropped in the 80's,  Dr. Fay told the nurse to stop his diruetic because his body was getting too dry.  Then his blood pressure was 100/60 last night at 9pm.  He is on 75% oxygen and staying well saturated (95) at that rate.  By now, after 2wks, they would like to have him at 50%.  The effects of long term high oxygen mean that his lungs can become stiff and require 100% oxygen constantly.  Then they would not inflate and deflate as needed.
Anyways, that's what I know for now. 
Please keep praying for Ben.  Seems like we go up and down daily; thank God for my mom and pastor's encouragement.  Yesterday, they helped to keep me sane-ish!  :)

22nd-Jun-2009 07:23 pm - June 22, 2009
When I got to the hospital this morning, I learned that Ben tested positive for yeast infection twice in the port in his chest.  Therefore, it must be removed in surgery.  He cannot have the surgery until his platlets reach 50K; he will be given platlets tonight and in the morning.  Once they reach 50, the IV team will come to the room to put in a "pic" line in his arm.  Then the surgeon, Dr. Smith will be contacted to say that Ben is ready for the surgery.  It has to be done in a regular surgical operating room.  The surgery is tentatively set for tomorrow afternoon.
Currently, his oxygen machine is set at 60 percent and he is doing well.  His white count was 1.3 today and no temperature.  Dr. Fay says the antiviral, Gangciclovir can be toxic and may be responsible for the decrease in his white count.  He has moved it to every other day.  He is still receiving antifungals, steriods, heavy sedation, etc.  
Please pray for the procedure to go well tomorrow.  I will update everyone when I know more.  Oh, the ups and downs...
21st-Jun-2009 08:04 pm - June 21, 2009
Today, Father's Day was hard for us to say the least.  However, I decided that since I love all holidays so much, we will celebrate Father's Day as soon as Ben is ready.  One thing we have already learned this year is to cherish every day we have with Ben.  He is a wonderful father!  He has been away from home since June 3rd.

Ben is doing well right now.  His oxygen machine has been reduced to 60 percent and he is doing well on that level (saturation 92).  Less fluid is coming out of his chest tube, 4ml.  That is a great improvement and means less fluid is seeping into his lungs!  Also, he has no temperature currently.  His white count is at 2; one of the antiviral medicines he is on is responsible for the drop.  That medicine has been moved to every other day, so his white count should improve.  Also, he will receive white count boost shots for the next 5 days.  Today, he received blood and platelets.  He is still completely sedated and on a full body paralyzing medicine to allow his lungs to heal.  His chest xray looks the same, okay.  

Thank you all for your continued support.  God is slowly healing Ben, for that we are very thankful.
17th-Jun-2009 04:27 pm - June 17, 2009

This morning, the pulmonologist found a pocket of air that had escaped Ben's lung and was putting pressure on Ben's lung.   Therefore, it could not expand completely and would be painful.  He did a procedure where he put a chest tube between Ben's ribs down into the air pocket to let the air escape.  This tube will stay in place until Ben is off the respirator; since he had some distress, he was moved back up to 100% oxygen on the machine.  So, the progress that was made yesterday to 80% has be to started all over tomorrow.  Ben is doing much better with this tube in; his blood pressure and heart rate are stable whereas the morning they did not look good.  So, Dr. Fay said this is another step back, but it has been fixed.   When he comes off the respirator, the hole with autmatically close up.   Also, Ben was getting a little bit more awake, squeezed hands when asked, etc.  However, they want him to be completely, deeply sedated now and they have also started him on a paralyzing medicine for his body.  They do not want him to move and cause the other lung to pop a hole, too.  The white count is good and he continues to need blood products daily. 

As my mom reminded me, Scarlett always says, "Tomorrow is another day". 


14th-Jun-2009 10:47 am - 22nd hospital stay in session
Well, this is Ben's wife writing ,so you know it won't be nearly as witty as his usual posting.  However, I did want to update everyone. 

The good news: 
Ben had a PET/CT scan last week and it showed him to be cancer-free!

The bad news: 
Ben is in ICU at Baylor Dallas for viral pneumonia.  He also has several other infections such as Citomegavirus, C-difficile, and staph infection in his blood.  His white count is in the normal range now (4-11); when he was admitted, it was 0.3.  He was put on the ventilator this Tuesday and is completely sedated to conserve all his oxygen for his lungs to heal.  His chest xray this morning looked worse according to the pulmonologist; it has more infiltrates.  They tried to wean him down to 90% oxygen the past two days, however his blood pressure went to 206/112 and his heart rate dropped, so they had to raise it back to 100%.  It can be dangerous to be on 100% for a long period of time and he cannot get off the ventilator until he requires around 60%.  His blood oxygen saturation level continues to be low- 62 as of this morning.   He requires blood products most days.  This type of pneumonia is very stubborn and should respond to treatment within two weeks; Ben has not made the progress they would like to see right now.  So, he will have to keep fighting. 

The rest of the news:
Please pray for God to heal Ben and also pray for his recovery.  This will be a long haul; for every day in ICU, they estimate 3 days on the non-ICU side of the hospital once he is off sedation.  We appreciate all your prayers and thank God for our family, church family and friends each day.  Our church has taken wonderful care of the kids and us; we feel God's loving arms surrounding us through their continued daily support with hugs, meals, transportation, prayer, babysitting, encouragement, etc.   My mother has jumped each and every time I haved called her, so I could rush to Ben's side; her unconditional love is evident for us in everything she does.  Ben's mother is down here now holding Ben's hand; may Ben feel her deep love and may it be a huge source of comfort for him.  I just want him to be able to come off that ventilator and sedation, so he can smile at me and say, "Hey, Baby"; I miss my love as I know you all do, too.  Thank you all for your consistent prayers and love.
May God bless you as He has blessed us,
21st-Apr-2009 08:09 pm - 100% Donor-fied!!!
Which is somewhat different than "fried donor"....  I've been around my mother too long. ;)

Chimerism test came back as fully-engrafted - my blood is 100% donor cells!   I finished my radiation treatments today, and the tumor on my face is completely gone.  The rest of the ones on my head are either gone, or significantly reduced, and the one on my back is shrinking (according to Dr. Fay and I; Ashli thinks it's the same size.  At least it's not growing!)

I have a whole-body rash, which Dr. Fay has diagnosed as GVHD.  Luckily, that's all that I have, and it's treatable.  He quadrupled my Prograf (to 1mg twice/day, as opposed to 1mg every other day), and added 20mg of prednisone to my daily regimen.  So far, so good - the rash is receding...

Not much new here - Mom went home Saturday, after being here about six weeks - we're going to be in the 70's-80's this weekend, and she said they're expecting more snow and rain in North Dakota.  I asked when she was planning on moving... ;)

Been back at work for the last week and a half.  It's been interesting, to say the least...  My buddy Bruce (who retired last fall) was back in town for lunch yesterday, and he told me that his son is working on retroviral treatments for T-Cell lymphomas, which is exactly the treatment paths that we need for my disease, and one that really doesn't exist at this point (most of the research has gone into B-cell, because that's where most of the cases are!).  Just one of those interesting connections...
15th-Apr-2009 09:53 am - April 15, Tax Day, and Day +27
Four weeks out, and still going strong.

Saw Dr. Fay again on Monday, and he is very pleased with the progress I'm making.  He's cut me down to 1mg of Prograf every other day, and the radiation on my face and head is having a definite effect.  Also, it appears as if the graft is doing it's part - one of the tumors that was starting to reappear on my leg had disappeared, and one on my back has stabilised.  Neither of those tumors is receiving any other treatment.  With God's grace, it looks like we may have turned the corner...

I'm on my second day back at work.  The walk in from the garage is a pain, as I've lost so much stamina (and ~75 pounds) over this, but it's good to be back and being productive.  I'm doing mornings at the office, and the rest of the time at home, in order to get back into the groove again (and allow for the drive down to Baylor for radiation!).

I'll see Dr. Fay again tomorrow, and he's supposed to have the results of the chimerism test by then.  My last labs showed everything back into the normal range, except for the oxygen-carrying capacity of my blood (hence, why I'm tired most of the time).

Mom heads home Saturday - she's been with us for six weeks now, and a lot of the snow in NorDak had melted (leading to flooding in the Fargo and Bismarck areas), so she thinks it's time to go.  We've been so blessed to have her with us, both from a logistical standpoint (watching the kids, accompanying me to appointments), and from a comfort perspective (it's Mom - what more do you need?).

I s'pose I'd better get back to work....
12th-Apr-2009 02:34 pm - Happy Easter!!!
He is Risen!  He is Risen, indeed!

I'm down to 1 mg of Prograf per day (from 4 mg when I was released), and that's the last of the immunosuppressants that I'm on.  Been running a low-grade fever for the last week or so (ever since they started cutting the drugs), but Dr. Fay thinks that's related to GVH, and is just something to manage rather than worry about.

We're in a race, at this point.  I'm receiving radiation for four different spots on my head, as well as my right shoulder.  I honestly think I just aggravated an old hockey injury in the shoulder, but it also lit up on my last PET/CT, so it doesn't hurt anything to have it zapped.  The tumors are growing in the spots that aren't being radiated (right ankle, shin, right side of my back), and I'm kinda using those to see what effect the graft is having.

Dr. Fay drew for my first chimerism test on Friday, which will tell us how much of my blood is still mine, and how much is donor.  He did say that he was very optimistic about the graft level on that, since my blood counts have pretty much completely recovered.  He said that he's had one person reject a graft in the last twenty-plus years, and that person's counts didn't recover for well over a month.  So, we'll keep fingers crossed, and should have the results on Wednesday (or so).

My team won their third championship (out of four opportunities) last weekend, and they had me join them for the pic.  Here it is:

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