Radiation 101

I have been meaning to get a blog post out for weeks now.  Time has a way of filling up and if you are not careful every minute is taken up by one obligation or another.  If I didn't enjoy (and need) sleep so much, I could get much more accomplished.

Well, as many of you may know, I have started radiation therapy.  We had a "preparing for radiation" appointment a few weeks ago at which time doctor explained the type of radiation they would be doing, created a body mold that I would lay in during radiation treatment so I would not move, and gave me some tattoos they need to have as reference points.  Everything went well and they got all the information they needed, left their mark(s) on me and sent me out the door with a "see you in a week".  All seemed to be going according to plan I was supposed to start my radiation therapy the day before thanksgiving.

As you may have noticed, I do not like to do things the traditional way and therefore my treatment has not been typical - which has been a great blessing from Heavenly Father.  It turns out that I am a larger than usual patient for the treatment method the New York doctors had prescribed.  The method of radiation therapy suggested is limited to a certain size.  As it turns out, most patients with DSRCT (Desmoplastic Round Cell Tumor) are adolescents and therefore smaller than me.  Even most of the adult patients are most likely smaller than me.  This special method for applying radiation was going to be quiet tricky and would take a significant amount of time to administer.  The radiation oncologist called me and explained the situation.  He acknowledged the benefits of doing radiation the new way but said he did not feel that the benefits were significant enough to warrant the added complexity of the procedure.  He suggested a more straight forward and traditional method.  He made it clear that the cancer sites would receive the same amount of radiation with either method, but that certain parts of the bone would be hit with radiation using the more traditional method.  From his point of view, the complexity of the newer method increased the chances for error and accident.  The dose of radiation is low and therefore the bones would not be getting a worrisome amount of radiation.

I initially told him to go forward with the more traditional approach.  Angela prayed daily to know if this was the right thing to do or if we should plan another trip to New York and have them do it the newer way.  Neither of us felt good about leaving the family again.  We need to stick together.  I started radiation on Tuesday and have had four treatments thus far.  It has all gone according to protocol.  They informed me I would have sun burn type reactions to the abdomen, nausea, and fatigue.  They are drawing blood each week to keep track of red blood cells since certain bones are being radiated.

The staff are great and I am able to get the treatments at the South Jordan facility in the Day Break area.  They have a Huntsman center there in the U of U facility.  The drive (traffic) is much better than going to Huntsman Hospital in SLC.

We have been truly blesses throughout this ordeal.  Heavenly Father has wrapped us in his arms and given us the courage, strength, and assurance to go forward.  Many have heeded the prompting of the spirit and come to our rescue as we have needed it.  We are so thankful to be surrounded by people to listen to the spirit and are the answer to heartfelt prayers.  Thank you so much!

Heavenly Father and Jesus Christ are real.  They love us and are there for us each step of the way.  Let us prepare ourselves to meet them.  I have so much to learn and so much to repent of and improve on.  I hope and pray that I will want to stay in their presence when I am able to come before them at the end of this life.  I have felt of their love and have a peace for what the future holds.

May Heavenly Father bless each of you.

-Doug-

It is GREAT to be home!!!

I must apologize again for taking so long in getting a post.  We get so excited to come back and when we get back we are so excited to spend time as a family - that the blog does not get the update it deserves.  I know that many people check the blog and I really appreciate it.  I will do better at keeping it update - I will try at least.

The radioactive treatment was everything they had hoped it would be.  I glowed in the dark for a few days, slept six feet apart from Angela at night, avoided children and pregnant women - for about a week.  There was no leaking and no noticeable side effect - at least I have not noticed any.

We got the OK to fly and came home on Wednesday the 22nd.  We were not able to sit together on the plane but we suffered through it gracefully.  We got home and hugged and kissed the kids and were do glad to be with the family.  Annie was especially glad to see us, bless her heart.  The boys were even glad to see us even though they new life would have to return to normal.

Well, the plan for now is this:  I have 4 weeks off until the study is complete.  I have to do blood work and scans each week but no treatment.  Right after Thanksgiving I get to do 4 weeks of radiation to the abdomen.  There will be some nausea and diarrhea but only starting half way through the treatment.  I will get a week or two off then get radiation to the rest of the tumor sites (chest, neck, armpit, diaphragm).  Following that will be some maintenance chemotherapy to top the whole thing off.  I know you are jealous - but I will not trade it to anyone for anything,

We are so thankful for all that you do for us.  Our family would be in shambles without all the help, love, and support that you have given us.  Please keep praying for us and loving us - we need it and will do our best to reciprocate it.  We LOVE you!!

-Doug-

Hospital picture

Radioactive

I am sitting here in the hospital with warning signs on the door telling people I am radioactive - am I in some kind of movie or something?

It is amazing to think of all the ways they have of treating cancer.  As usual the staff here have been wonderful and caring. This is truly a great medical facility.

So, they gave me the treatment dose yesterday at 4:25 pm. It consisted of radioactive iodine attached to a protein (something harmless) that will in theory be attracted to the cancer cells. I will be on special precautions for a week.

They said that the big thing with radiation exposure is time and distance. The further away you are, the more time you can spend with the radioactive item or person. Each day my radiation levels will decrease as the iodine breaks down but mainly because it will be absorbed in my bowel and excreted in my waste. Needless to say, they are not having me save my urine to make sure I am getting enough liquid.

The good news is that if all goes well they said I could come home a week earlier than we had planned. We are hoping I can come home with Angela.

Thank you for all your prayers, love, and support. Your love and faith in our behalf have allowed us to get these treatments. Heavenly Father lives and loves each of us. He is in the details of our lives. He has been so merciful to us this year as we have pursued treatment. We hope to lift the burden of others while we are here. There are so many people that would embrace the gospel of it were only shown to them.

Thank you again for all your love and support.

Heading Into The Weekend

First of all,  I want to thank everyone for all the help, love and support that you have given our family.  We had to pull this trip together at the last minute and everyone stepped up and gave all that was needed to make this trip possible.  Thank you so much!!

I had my surgery on Friday and have recovered well.  The bowels got working just in time for me to leave the hospital and since then I have been prepping my abdominal cavity for the experimental treatment.  We do this by pushing in a certain amount of saline solution, let it sit for a while, then drain it out.  We started with 50 ml, then 250 ml, then 500 ml, and now 1 L.  The experimental medication dosage is going to be 2 L.    

This weekend, we will keep doing the filling and draining, then on Monday I will get a test dose.  They will then have me do scans on Monday, Tuesday, Wednesday, and Thursday.   If the scans are good, I will get the treatment dose on Thursday.  

Overall, things are going well.  The doctors are pleased with how things are progressing.  

My sister has been with me and has done a wonderful job in taking care of me.  I am so thankful to her and her husband for the time she has spent with me in NYC.  Angela will be coming this weekend to trade off my sister.  

We had a neat experience at dinner tonight.  We met a fellow Latter Day Saint.  She was here with her son who was getting treatment at Memorial Sloan Kettering Hospital.  He came to a point where things did not look hopeful.  They came to New York for a different type of treatment.  Things are looking better and there is hope.  We talked about how the best thing about the gospel is peace.  No matter how discouraging things look, we can still have the peace that comes from trusting in Heavenly Father.  This is His plan that we are following.  We move forward, listening to the Spirit as we make decision and trust that whatever happened is His will,  

I struggled with this a little for this trip,  I kept wondering about the first attempt being cancelled and what it meant.  I was unsure of myself to make the decision again.  I had to realize that I did not know why things had happened the way they did, but that I needed to move forward.  For the same reasons as before, I chose to proceed with the experimental treatment.  The confirmation has come as things have fallen into place in amazing and miraculous ways.  

I know that Heavenly Father lives and loves us.  He is there waiting to comfort and guide us through life's trials and experiences.  Thanks again for all of your love and support.

Wonderful Conference Weekend

I never imagined that I would be watching general conference from a hospital bed.  It is a wondrous thing that we can watch it anywhere there is an internet connection.

The surgery went well. The doctor did not find anything unusual or concerning. There wasn't even very much scar tissue from the last surgery. The doctor was very pleased about how it went. It is nice to have a small incision that is glued together instead of a large incision stapled together.

I am able to eat clear liquids. We are waiting for my bowels to wake up. The hospital staff says I am doing really well. They are filling my abdomen with saline solution to get it ready for the experimental treatment. This is all new for many of the staff.

I was very grateful for the general conference messages. They filled me with hope and reminded me that I need to stay focused on the gospel during this time. I need to make sure I don't get consumed with myself and my own problems. I need to make sure I am still looking around me for people I can help and invite to come unto Christ.

Surgery Day

Well, we made it to NYC safely. I did drop a credit card on the way and thankfully someone turned it in to the ticket desk. However, I did drop my drivers license somewhere. I am praying for another miracle that it will be found and returned.

My sister Lisa is with me and will be taking care of me during surgery recovery. We flew in on Tuesday and have had a few days to show her around and do a bunch of walking before the surgery. I have been so blessed with such a wonderful family. Angela will be coming out on the 11th to trade off. I miss her.

They say I will be in the hospital 5 - 7 days. Hopefully I will heal quickly and be out sooner.

I am so thankful for all the love and support that we fill.  We are so blessed. Thank you all so much!

The Scramble

Hello Everyone - we just got a call from the New York doctors and they would like me (Doug) to fly out on Tuesday so I can meet with the doctors on Wednesday and have the surgery on Friday.  Take a week of pills, get the experimental injection, wait around for a couple of weeks to make sure nothing bad happens, then fly home around the 31st of October.

We are in hustle mode to get housing, flights, and caregivers all in place.  Things are working out so far.  My sister is able to come out with me at the beginning, Angela will come out for a couple of weeks, and we have another family member that is seeing if he can come out for a week.  I am trying to get a hold of Delta - will probably be on hold for a while as I am trying to re-book a flight we had to cancel when the first attempt fell through.

We have been praying hard to know if this is the right thing to do.  Please continue to pray that all go according to His will.  We are so thankful for all the help we have received from everyone.  We know that we are surrounded by angels!

Decision time

We met with the doctors today - the oncologist and radiologist from huntsman and the surgeon from New York.  The New York doctor said that after reviewing the scans he thinks I am still eligible for the trial they are doing. All the doctors agreed that if I wanted to do the trial, I should do it now before any other treatment. Of I did not want to do the trial then I would do radiation. 
I was excited about the trial before I had all my bowel obstructions, now I am unsure. I want to do what is best for my family, but only Heavenly Father knows that. I must make a decision and pray earnestly about it. If I do the study, I would be gone for a month. No one knows how my body and the cancer will react to the trial or the tradition.
I must have faith that Heavenly Father will continue to be merciful to me and lead me by the hand to the places I need to go while on this earth. I know that God lives and loves me, my family - all of us.  I know that of I am doing all I can to keep his commandments he will guide me in my decisions and steer me back on course if I start to stray.
Thank you for all your love, support, prayers, and thoughts.  We feel it and are so thankful for it.

Miracles abound!

I must apologize for the lateness of this post. This should have been posted immediately so we all could celebrate together.

My scans came back CLEAR!!!!!!!!!!

They do not see any signs of cancer - miracles are still occurring in our lives.

Thank you for all your prayers and fasting. We have felt the power of your faith.

I still have some preventative treatment to consider, but do not know the details yet. Please continue to keep us in your prayers as we need to make those treatment decisions.

I am so thankful that Heavenly Father has allowed me more time on this earth. I pray I will do His will and not waste a moment of this gift.

Back in the Hospital Again

I must just really love it here at the hospital.  Angela is going to think I go here on purpose - ha ha.

Friday morning I started having stomach pain.  I vomited a few times.  Angela convinced me to go to the ER.  They did a CT scan and said it showed a small bowel obstruction.  They put in the NG tube (I was really looking forward to not having that experience again), then admitted me to the hospital.  I had a restless night and come to find out the NG wasn't working properly so I ended up vomiting again.  They did a small bowel follow through which is where they have you drink a laxative type substance that shows up on the X-Ray.  My went through the system and cleaned me out.  I think the chemotherapy constipated me and that is why I had the bowel obstruction.  The GI doctor I talked to a while back said that constipation is the main cause of bowel blockages.

Well, the test was successful and things seem to be flowing again.  They have put me on a clear liquid diet.  If that goes well through the night, I will get a full liquid diet in the morning and will maybe be able to go home tomorrow.  That would be wonderful.

Our family is so wonderful.  We had planned a trip out to my parents house but wasn't sure how it was going to work once we went to the hospital.  My sister took the boys up for us and is staying there over the weekend to help supervise and take care of them  We have such wonderful friends and family.  Friends are taking care of Annie so Angela can come and visit me.  We are truly blessed.

I thought things were going really well, but I guess not as well as I thought.  I have learned an important lesson though.  Short term sacrifice can bring long term blessings.  The doctors wanted me to be on a special diet for 6 months to a year.  I was feeling well so I started eating some questionable foods.  This may not have been the cause, but I know it did not help the situation.  I must sacrifice my appetites in the short term to be able to enjoy in the long term.

Thank you for all your love and support. We are so blessed to have you in our lives.

Quick Update

Just wanted to give a quick update on what is going on.

I just got off the phone with one of the doctors at MSKCC in New York.  They have reviewed the scans and are now questioning whether or not what they saw is really cancer growth.  They have requested that I do a PET Scan to see if that area behaves differently than the surrounding tissue.

Huntsman should call in the next day or two with a date and time for the scan.  If the scan comes out positive for cancer then they recommend that I do radiation - I would no longer qualify for the study they are doing.  If the scan comes out negative for cancer, then they say I still qualify for the study they are doing in NYC.

We are going to be a lot of thinking and praying about the study and whether or not we still want to do it.  Please pray for us that we will be in tune with the Spirit so that we make the correct decision for our family.

We love you all so much.  We are overwhelmed by all the love and support that we receive for you.  We know that God lives and love us.  He is aware of all the we go through.  If we focus on Him and our eternal family, we can get through anything!

Thanks again for all the prayers, fasting, and positive vibes you send our way.

-Doug-

News from the Doctor

I apologize for not updating the blog after Thursday's appointment.  I was waiting until today's appointment to be able to give more information about what is going on.

The doctors a Huntsman have not seen the tumor growth in the scans that the doctor in New York saw.  They see some "post surgical developments", but do not think it is cancer growth.  What they do see appears to be getting smaller, not bigger.  So, they are still working with the doctors in New York to come to an agreement on what the next step should be.

They say that radiation and chemotherapy are the choices they are considering.  They have not said how long or how much of either one.  So, for now I am enjoying the break and trying to spend good quality time with the family.  The kids are growing up so fast and I do not want to miss a moment of it.

The Huntsman doctors are supposed to call later this week with a proposal for continued treatment.  Please pray for us that we will make the correct choice.

We are not sure if another NY trip is in the future, but we will continue to pray for guidance so we are led the right direction.  We know that if we go forward in faith that all will work together for our good and growth.  Heavenly Father knows what we need in order to be worthy to enter His kingdom.  I hope I am humble enough to learn the lessons that I need to learn to be with my family in eternity.

One of my favorite things is to hear my children pray for me each day.  It gives me strength and courage to go forward and live my life the best that I can - to be the best that I can.

Thank you for all your love and support.  We are so grateful to be surrounded by so many loving and kind people.  You are example to us.  We hope to lift others as you have lifted us.

-Doug and Ange-

Communication is a wonderful thing - when it happens!

I had a CT scan today and an appointment with the radiation oncologist.  The scan went well.  Once you have had 3 or 4, it becomes second nature.  However, the 'wet your pants' feeling is a part I cannot quite get used to.

The appointment with the radiation oncologist was not nearly as productive as the scan was.  First of all, he (and other that were with him) could not see the nodules that my NY doctor said he saw.  This was confusing to them so they are going to do a more thorough review of the scans.  Secondly, he was not aware of the data that MSKCC had that showed radiation to the abdomen was beneficial in my situation.  Needless to say, he was frustrated and was going to call our doctor and get on the same page.

I go back on Thursday to meet with my regular Huntsman doctor.  By then they are supposed to have answers as to whether the cancer is really growing back or not.  They should have a 'what do we do now' plan for me.

In some ways this is a relief.  It gives me hope that he cancer may not be growing back after all and that this happened because we were not supposed to go to NY again at this time.  We will enjoy another day and try not to think about it.

I have often heard that we do not always understand the path that Heavenly Father has in store for us to take.  We just have to have faith to keep in the path and take whatever twists and turns come our way.  The path will lead us to out Father in Heaven, to be with Him as eternal families.  I truly feel my Savior's love.  He is has surrounded me with angels.  He is always there when I turn to Him.  He is there for you too.

Thanks again for all the love and support.  We will keep you posted on what happens on Thursday.
-Doug-

Change of Plans

I think there is a saying that implies once you get comfortable with something, things will change.  This is so true.  We were planning out third trip to NYC.  I was actually looking forward to certain aspects of the trip.  It was going to be less invasive procedures.  I would not be in the hospital for very long.  Angela was going to come out at the end of the stay when I would be feeling my best.  The trial that I was going to participate in had some very exciting potential benefits.  

Well, "Murphey's Law"struck - he did a really good job on this one.  The day after the final plane tickets had been purchased for my caregivers during the trip, my doctor from NYC calls.  It is usually not a good thing when the surgeon himself calls.  As it turns out, the most recent CT scan is showing some nodules in my right diaphragm - where I had the latest surgery.  It appears that the cancer is aggressive and is growing back.  Things had been shrinking when I was on the chemo, but with my bowel obstruction, they took me off the chemo so I could recover.  The only way to know if the nodules are cancerous would be to do a biopsy.  However, I think that my doctor in NY has seen enough scans to know when something is out of place.

So, what do we do now?  My doctor recommended that I cancel the trip to NYC and start radiation therapy at Huntsman.  They have data to suggest that surgery, followed by radiation will give me the best chance of long term survival (more than 5 years).  I talked to my doctor at Huntsman and she agreed.  I will go up to Huntsman next week to get scans and to talk to the radiation oncologist about how to proceed.  

I knew that radiation therapy was coming up, but not this soon.  This has taken Angela and I a little longer to accept.  We had a plan and were really hoping to follow it.  It has been a trial of faith to accept this turn of events and the new path forward.  I have to remember "Thy will be done" and not "My will be done".  The hardest thing about it is the new growth.  We just weren't expecting it so soon.  We had in our minds that was likely to happen, just further down the road.

There is a reason for this.  This is part of Heavenly Father's plan for me and my family.  Heavenly Father will still be there by my side comforting me and giving me the strength to endure.  He is still concerned about me and my family.  

I think of those I know that have battled and survived cancer and other trials.  You are an inspiration to me.  I know that if I am faithful to my covenants, I will not leave this earth prematurely.  I love my family and wish to be with them on this earth for a very long time.  I will do my best to cherish each day as a gift.

Thanks again for all the love and support you give me and my family.  I do not fear the future.  I know that angels (you) will be there to buoy us up and carry us in our time of need.  We love you!

Good Collection Day

On Tuesday, I was back up at Huntsman for another round of stem cell collection.  Everything went well.  Angela was able to take me up.  My sweet mother came Monday night so see could watch the kids.  The collection process went well and Angela was able to go visit a friend while we waited for the collection to end.

I ended up harvesting as much on Tuesday as I had harvested in all three days in my first attempt at harvesting.  Good news is that I have the minimum number of cells collected.  However, because I donated so well, the asked that I come in today to donate again.  I guess that the goal was to get 2-5 million stem cells.  I have 2.5 million right now.  It will not hurt to try to get more and may end up being a good thing down the road.

We are getting ready for our August trip to NYC.  This will be a trial study.  We are trying to all we can and trust that the Lord in his mercy will take care of the rest.

Thank you again for all the love and support you have given our family.

Home Is Where The Heart Is

I was released from the hospital on Monday.  The severe pain had gone away by Saturday night, but they needed to wait and make sure it did not return.  I was able to do clear and full liquids on Sunday.  I ate a lot of ice chips.  I find them somewhat soothing and therapeutic.  I was able to ear some eggs and a roll on Monday and they settled well.  That convinced them that I was fit to go home with special instructions not to return.

Angela has told many people that her goal in life right now is to keep me out of the hospital.  We are keeping to liquids and very soft runny foods for a week or so.  We will see how adventurous we get as time goes on.  We really do not want to go back to the hospital.

I was able to go back to work today.  DHI Computing Services has been a heaven sent as far as an employer.  They have gone above and beyond what you would expect an employer to do.  They are so supportive and have allowed me to work as I am able.

My stomach is still not 100%.  This episode was different in that my stomach never fully recovered.  It may be Heavenly Father's way of having me keep to a special diet for as long as my body needs to.  I still have some cramping, but nothing close to what drove me to the hospital.  I will look into some bowel healing remedies at some point.

I can't thank you enough for all the support you give us - especially on such short notice.  Meals have been brought in to help our family at a moments notice.  We feel your love and it brings us the comfort we so earnestly seek.

Heavenly Father is in charge.  He knows what we need to grow, learn, and prepare to be an eternal family.  We will have faith that we can endure and become who Heavenly Father wants us to be.

Thank you again for all you do for our family.

-Doug-

Future Plans Update

Well, I have progresses to a soft food diet.  If that food goes well, then I should be able to go home.  My stomach has been through a lot and may not feel all the way normal, but at least I am not in pain. We really hope to recognize what I have been eating to cause these problems.

We are trying to get everything ready for the trip back to NYC in August.  This is a longer trip so we are trying to have multiple care givers for me to lessen the impact on our children.  We are still trying to finalize the funding, finish collecting stem cells, and then we can book the tickets.

Having said that, we are looking for anyone that has extra frequent flier miles that they would be willing to donate to help get my sister out to NYC to care for me for the first shift, and for Angela to come out for the third shift.

We know that you all have done so much already and we hate to ask for more help.  We are praying each day for guidance to do the right thing so that I can stay on this earth with my family for as long as Heavenly Father will allow it. 

Thank you for your prayers and love and kindness.  We are better for knowing you and having you a part of our lives.

-Doug-

Back in the Hospital

I must really  need some humility or something.  I am back in the hospital because of severe abdominal pain.  They did some scans that showed a bowel obstruction in resolution.  I am not sure what that means, but hopefully it means a quicker resolution to the pain and a quicker discharge.

We decided to have them keep me at UVRMC instead of shipping me up to Huntsman.  It will be much easier on the family.  They should be able to treat a bowel obstruction just fine here - we hope.

I really hope we can figure this thing out.  This is the 3rd time in just a few weeks.  I am so blessed to work for a company that will work with me through all of this.

I was able to hear the sacrament prayers this morning as a couple and another brother brought around the sacrament.  It was wonderful to hear the promises of our Father in Heaven to us as we try our best to do as our Savior would do.

Keep the prayers coming.  We love you all. We know life's trials are for our growth and we know He will give us the strength to endure all that lies in our path.

I am at UVRMC, room 794.

-Doug-

Stem Cell Harvest

First of all, Angela wanted me to send out a HUGE THANK YOU to everyone who has helping and is helping our family during this time.  She feels loved and supported and wanted everyone to know that we could not do it without your help.  You are our angels lifting us up and carrying us through this difficult time.

The stem cell collection has been an interesting and frustrating experience thus far.  The goal for my stem cell harvest is 2 million.   They collected 1 million the first day time, but only 0.2 million the second time.  Today will probably be even lower.  They told me that because of the chemo that I have had, I am considered a "poor donor".  I am not outputting what they would have expected.

We have had a run-a-round with a special shot that I should have been given but because of insurance concerns, they didn't have me get it for two nights.  Come to find out, our insurance did approve it but the message did not get to the people it needed to.  I should get the special shot tonight then hopefully the collection tomorrow will go much better.

The doctor here is going to talk with the doctor in NYC that recommended the stem cell collection and see if they really need the 2 million.  So we will see.

The technician did say that he has seen patients that do not donate well, take a break and come back.  Hopefully that will not be the case.

Thanks again for all that you wonderful people do for us.  You are God's hands working miracles in out lives.  Heavenly Father has blessed us so much.  He will bless you for your kindness and sacrifice.

-Doug-

Clinic 2c

Well, I was able to get out of the hospital yesterday evening.  A kind neighbor came to visit and was able to take me home.  Rough night though.  Too hot.  Annie cried throughout the night.  This is really taking its toll on our family.

Angela is such a trooper,  but you can only do so much for so long.  Thank you to everyone who has called and offered help.  This really made a difference for her.

This morning I am in Clinic 2C to have another stem cell harvest.  They just drew blood for lab work.  They have to check certain levels before they will start the harvest.  We will see how the harvest goes as outpatient verses inpatient.

Angela's mother drive me up and has been kind enough to stay for a while until things get going.  Angela's dad is going to take me home when I am finished.

I just found out that the shot I had the other night for the stem cell harvest can cause abdominal cramps and diarrhea.  This may have been the "bowel blockage" that I thought I had the other night.  I will probably have to have the shot again.  Too much fun.

Thanks again for all your prayers and faith.  We feel it and are strengthened by it.  We will keep striving to do what Father in Heaven would have us do.  We know he will bless us as we do so.  He is in charge and we will follow His plan for us.

Here Again?!

Well, I am back up at Huntsman.  I had another bowel blockage and they are harvesting stem cells.  I had to come up last night about 10 pm for a special shot.  I got home and tried to sleep but I started getting stomach cramps just like the ones I had for the bowel blockage I had earlier.  I woke Angela up after calling the on call oncologist who said to go to the ER and have some scans done to see if it really was a blockage.  This was a rough night for all of us.  They transported me to Huntsman where they decided to go forward with the stem cell harvest.  One doctor said that the shots I have been taking for the stem cell production could cause stomach cramps.  So, we are not sure if I ate the wrong foods or if it was the shots.  Either way, I ended up with the tube up my nose again.

They do have me on a clear liquid diet and my stomach does act like it is working now.  I need to have a bowel movement and then all parts with be working correctly.

Please pray for Angela.  This is really wearing her out.  She is burning the candle at each end.

Thank you for all your prayers, thoughts, and acts of kindness and service.  We need them so much.  We will get through this with Heavenly Father's help.  Sometimes we feel that is all we have left.

Doug

A Wonderful Gift

Tonight we were completely surprised when two neighbors/friends stopped by with some gifts and many notes of support and love from all the neighbors.  They collected money so that our family could buy a season pass to Thanksgiving Point.  WOW!!!!!!  The owner of a food store also donated money to our family.

I was speechless.  I did not know how to adequately express my gratitude for all of the people who donated to this gift.  As I read through the notes, I had to hold back the tears as I was reminded of how many people truly love our family and are praying for us each day.

This is a gift that we will remember for years to come.  This will allow for some wonderful memories and experiences that we would not have had otherwise.

THANK YOU!!!   THANK YOU!!!   THANK YOU!!!!

We love you all and pray for your well being and for Heavenly Father to watch over and bless you!

Doug, Angela, Matthew, Jonathan, Daniel, and Annie

On to BMT to harvest stemcells

Well, if you haven't heard, they released me from the hospital Wednesday afternoon.  It was a joyous
occasion with much rejoicing.  They saw me eat some solid foods without getting nauseous so they gave me instructions on what foods to eat and sent me on my way.

A dear friend came and picked me up.  We had a great ride home and a happy reunion when we pulled into the driveway.  It was so great to see the children.  That is the hardest thing about all of this - time away from the family.  We has lots of hugs and kisses.

I took it easy today.  I am eating more solid foods and so far no stomach pain, but I have to take it slow.  I may need more flavored beverages to keep me away from the solid stuff.  I am excited for the 4th of July celebrations.  We have a family gathering and fireworks are always fun.  I will need to take it easy still.  We will see what activities I actually end up participating in.

I have started special injections that promote stem cell production.  I take these shots until my levels are high enough for a stem cell harvest.  The harvest could take 1-4 days depending how much they can get in a setting. This means more trips to Huntsman.  I am sure if I will be able to drive.  We will try and see if there are any problems.

Thanks for all the prays, love, and support.  We will get through this in Heavenly Father's way, with Heavenly Father's help, and according to His time.

-Doug-

Real Food

Well, things are progressing right along with my diet.  I have gone from clear liquids to full liquids to low fiber.  I ordered some toast, eggs, and a cookie.  We will see how this food settles in my tummy.

They are talking about discharging me by tomorrow (tonight if things go well, but I am not holding my breathe that all the paper work will get done one time).

This has been and continues to be an interesting experience.  I hope to never have this problem again.  Time moves so slowly when you are in pain and no one around you appears to be helping fast enough.  Pain warps perspective.  I am so thankful to be out of the painful stage of this condition.

This low fiber diet will be interesting as they want me to be on for 6 months to a year.  If I am doing chemo and radiation, then I may have to do it longer.

I get to try "Ensure" as a supplement.  If anyone has a drink like Ensure that they really like, please let me know.  I heard there is a Costco version that is less expensive.

Thanks again for all your love and support.  I know that we are all being blessed through this trial.  We are blessed through your service and prayers.  You are blessed for it.  Heavenly Father is watching over all of us.  He loves us and will allow us those experiences that refine us and prepare us for heaven.

Hopefully the next entry will be written from home!!

-Doug-

Free From The Tube

Well, great news for everyone:

NO MORE STOMACH TUBE!!!!!!!!!!!!!!!!!!!!

I am pretty excited about that!!

This morning, one of the surgeons came in and looked at the stomach output and saw how low it was.  He tried to hook it up to suction, but the tube wasn't cooperating.  I tried it and I cracked a piece of it.  (It was plastic : )  So, the surgeon said it had to come out now because it was broken.  The surgeon had me take a big breath, then bow out as he pulled the tube out. Getting the tube out, was a much better experience than getting the tube in.

Now, I am on a clear liquid diet.  They are going to see how this goes today and will make diet modifications as time goes on.  I have to make sure that I do not overdue the eating.  Too much, too soon could be disastrous.  They are hopeful that I will be able to leave by the end of the week.  I would love to come home on Thursday so I can go firework shopping with the family!

I can talk now and it does not hurt.  I can swallow a lot better.  Things are looking up.  The plan is to make sure the liquid diet has no complications, then go to ice cream, yogurt, pudding type foods.  Next would be the soft palatable foods.  At that point I may be able to come home.

Thank you for all your prayers and fasting.  I have felt the strength coming from your faith.  We love you all.

-Doug-

Let the Testing Begin

We are starting today to do some testing.  My stomach output has been low and has really just consisted of the ice chips and I water I have had.

So, they stopped the suction and will wait until 1 pm to assess if my stomach is processing things as it should.  I will have some ice-chip, but not too much.

They are testing to see of I get nausea from not having the stomach pumped out.  Cross your fingers that my stomach is doing what it is supposed to be doing.  I still need to be having more gas.

Thanks again for all your prayers, love, and support.  BIG thanks to everyone who is taking care of my family while i am here at the hospital.  We are surrounded by angels!!

Status Update

Hello Everyone,

I just wanted to let everyone know the status of things.  Thank you for all your prayers and fasting.  It has given me the strength to endure this trial.

The surgeon that seems to be in charge of me keeps saying "give it more time".  They said that it could take up to two and a half weeks for the bowel to disentangle itself from the scar tissue.  I had been putting out a lot of liquid from the stomach so they wanted that to decrease also.

As of this morning, the doctor said he was giving it more like 10 days to see a significant improvement.  They will start to consider surgery on Wednesday if things are progressing more.  Well, after I had talked to the surgeon and the team of doctors, I had a bowel movement and urinated more than usual.  My stomach is producing less liquid also.  I hope this means I am turning the corner.

Another surgery will just increase the chances of this happening again in the future.  I did realize that I had not been as active as I should have been with walking and exercising.  I need to get a good exercise routine in place to keep everything in its proper place and position.  I will also have to be careful with how foods are prepared when I eat them.  I may have to do smaller portion sizes throughout the day.  We will see what they say.  

Thanks again for all your love and support.  Thanks for all the visits, emails, and prayers.

-Doug-

Back in the Hospital - not a fun surprise

Hello Everyone,

Monday evening I began having severe cramping.  I received a priesthood blessing and was able to sleep a little.  However, the cramping continued through the night and eventually Angela convinced me to go to the hospital.  After hearing my medical history, the doctors immediately thought of bowel blockage - where scar tissue from my first surgery has gotten tangled with my intestine and pinched it.  The cramping comes from the body trying to push stuff through the pinched area- very painful.

They stuck a tube up my nose, down my throat, and into my stomach.   They hook this to a pump and pump out whatever is in my stomach.  I am not a fan of the tube, but having an empty stomach means less cramping and less vomiting.

Now they are saying it is a partial blockage.  They must think air is getting through.  They keep asking if I am passing gas - not yet.  This means my intestines have fallen asleep.  It may be due to the pinch or pain medications or both.  Now it is a waiting game.

I can do some walking - that is supposed to help.  I will need to exercise regularly (M-Sa) to keep my bowels in good working order.

One f the nurses did say that one of the doctors thought that my second x-ray showed improvement - I hope she is right.

Now it is a waiting game.  They are going to start IV food since some of my levels are dropping low.

Thanks for all your prayers and thoughts.  This has been harder for me to handle.  I have broken down a few times.  I love you all.  I know that Heavenly Father is in charge.  I will bear my burdens in his name - with hope, patience, and love.  Thanks again to everyone for your love and support.

Home - Hooray!

We are so glad to be home.  There is definitely different dynamics here at home with the kids, but we would not trade it for the world.   They bring us joy and happiness - even amid the chaos.

We came home on Monday.  I started chemotherapy on Wednesday.  I am doing the 5 days on, 2 days off, 5 days on, 2 days off, then 1 week off chemo cycle.  It is interesting trying to control the nausea from the chemotherapy and the pain from the surgery.  TOO MANY PILLS - if you ask me.  I am recovering well.  I met with the doctor on Wednesday and she said all looks well.  Keep up the prayers - they are working.

We are trying to get everything in place for another trip in August.  There is a trial medication they are offering in NYC.  We have to get the funding in place since it involves a surgery to place a catheter into the stomach in which they would inject the medication.  Angela is working diligently to find a way to pay for the surgery.  There is another trial medication in Maryland that would involve flying out for a few days and getting the medication.  Since there is not a "cure" for my type of cancer, the doctors are saying to try anything that is being offered in hopes that it prolongs my life.

We are so thankful to everyone that helped take care of our children while we were gone.  Thank you to everyone who brought in meals.  We have felt loved and supported this entire time.  There is no way that we could have made it this far without your love, support, prayers, and sacrifices in our behalf.

We know that Heavenly Father is watching over us and guiding us.  He will lead us down the path that He has prepared - the one that leads to eternal life with our eternal family.  We will keep trying to do our best to keep His commandments.  We love you all.

-Doug and Angela-

Father's Day

Happy Father's Day!!!!

Angela and I have been blessed with the most wonderful fathers and grandfathers anyone could ask for.  They have been completely supportive of our efforts and have shown unconditional love.  They ask questions and help us brainstorm to make sure we are getting the best care possible.

They have been a listening ear and a source of comforting words.  They are always good for a much needed hug.  Their prayers go to heaven in our behalf, from one father to another.

We know that with Heavenly Father guiding us and our earthly Fathers guiding us, we will be led the right way through this trial.  We will learn what we need to prepare us for eternal life.

Thank  you so much!  We love you so much!!!!!  We hope today is truly a HAPPY Father's DAY!!!!

-Doug and Angela-

Healing and Preparing To Come Home

We are coming HOME!!!!!!   The doctor has given us the OK to come home.  HOORAY!!!!!!!  We have been able to move our plane tickets to Monday - don't tell the kids though, we want it to be a surprise.

We have been able to see a few things here in NYC over the last few days.  We went to the Metropolitan Museum of Art twice.  It was fun to see Angela get all excited over paintings.  I even saw some paintings that I liked - none are as good as Angela's though ; )

We went to Central Park Zoo to escape the city feeling.  It was fun to see the staff feed the Sea Lions.  We walked through the steamy Tropic Zone and saw some really cook birds and reptiles.  They have a red Panda Bear and a big display of Penguins.  It was so green and there are so many plants, that it was easy to forget about being in the city.  I was able to take a nap -  I am needing that extra rest for some reason.  We went and saw the remains of some castle - very small.  We wandered through the trees and inquired about renting a row boat - too expensive for us.  We joked about about bring an inflatable raft next time.

Wonderful volunteers brought a great dinner for us at the Ronald McDonald House.  We had a full plate of dinner and dessert.  They do there best to take real good care of us here.  We watched a movie as our dinner 'settled'.

Angela has been working very hard at making arrangements to come back in August.  We would like to participate in a trial study that they are doing here at Sloan Kettering Cancer Center.  The drug they are testing is provided by the hospital; however, a surgery needed to install (and the surgery to take out) a catheter through  which the drug is administered is not paid for.  The surgery would be very expensive.  We have to get some information and work with the hospital to see if financial aid is available.  We will try to get it funded and hope we will be back here is August.  Since my cancer is so rare, the doctor is recommending that we take part in as many trials and studies as we can that make sense for my type of cancer.

I am excited to go to church with Angela tomorrow.  I did not bring church shoes so hopefully my black Nike with red shoe laces won't stand out too much.  

Thanks for all of your prayers, love, support, and guidance.  Thanks to everyone who have kept our children safe.  We know that Heavenly Father will guide us through his paths.  I hope that we are interacting with the people he would has interact with and sharing his love in His intended way.

-Doug-

Change Is In The Air

This morning I was up at 7 am.  I will still tired, but not tired enough to really sleep.  I did my breathing exercises, shoulder exercises, ordered breakfast, went for a walk, and had a bowel movement.  I ate breakfast once it arrived.  Angela called and said she was on her way.  Once Angela arrived, I was pretty worn out so I took a nap while Angela read.

This morning, the doctors told me that the only thing holding me here at the hospital, is the medication.  I need to go from IV medication to oral medication.  I have started that process and the plan is to un-hook my IV tonight.  I will have two oral pills.  One I take twice a day that is the base medication for pain control.  The other pill I can take once an hour as needed for pain control.

We then meet with the doctor in clinic on Friday.  They can then get me so on some lighter pain medication that is not habit forming.  Soon I hope to be all healed up and off of all medication.  We probably will not know until Friday when we will be able to fly home.

I am still sore at the incision site and at the chest tube sight, but things are healing up.  I think that I am making good progress.  I just have to be patient with myself and get the rest that my body needs these next few days.

Thanks again for all the love and support.  -Doug-

Fun and Adventures with the Chest Tube

Thee past few days have been a little crazy.  My chest tube has become sore.  They have need to increase the pain medication.  This has made me more tired during they day.  Poor Angela is having to put me down for little naps throughout the day.  They did take an x-ray this morning that shows bruising of the lungs and/or fluid build up at the bottom of the lungs on my right side.  I am able to sleep, but the fear is that I am not moving around enough between my "naps".

I am still trying to have my first bowel movement.  The nurse gave me some special orange syrup for tonight.  We will see how it goes.

One of the next challenges will be to transition from IV medication to oral medication.  We need to get the chest tube out, then the transition will go really well.

Angela has put together 2 photo books.  She did a great job!!  These were photos from back in 2010.  My, have our children grown up!

We really appreciate all the prayers, love, and support.  Our children our safe and we are preparing future studies.

We know that Heavenly Father will guide us through this process.            

Love - Doug -

:Post Op - Slow Moving

Sorry it took so long to get a report on the surgery.  I am been a little tired, sore, and somewhat bedridden.  I am feeling well - but do not like coughing.  It is not as bad as my abdominal surgery for the coughing, but it is a pain to move my right arm.

They went in at my right shoulder  blade and removed some 'dead' tumors from around the heart.  The doctor was pleased with how it went so I am to.  The nurses have been really kind and all the staff have been very helpful.

A good thing is that I did not have to stay on the POU (Pediatric Observation Unit).  They set me straight to the regular floor.  The nurses are telling me I am recovering well.  My doctor came in just as I had gotten into bed after doing some laps and told me to get up and move around and not lay in bed all day - timing is everything.

Angela and I watched a movie tonight - Inspired Guns.  It was fun to relax.  The candy cart came by and stocked up on treats.  I will be wise and not each very much - I hope.

I am having a little leaking at my check tube site.  This happened last time and I had to keep getting more and more dressing until I had pretty good obstruction sticking out the side of me.  We will see how this ends up.

I am in good spirits.  Angela's sister was able to fly out thanks to the generosity of a family member.  They have been able to do some fun things together.  I am reading the House of Hades book to see if it is appropriate for Matthew and Jonathan.  It has some parts in it that Angela will need to talk about.

I am able to eat.  I had lunch and dinner today.  A bowel movement is the next goal for the day.

Thanks for all your prayers and love for our family.  We are lifted up by your love and are able to conquer all our foes.  Thanks to our Savior Jesus Christ, we do not fear the future but pray for the faith to accept his will.  God lives and loves us!

-Doug-

More Pics : )

Here are more pics from our adventures today.

2 scans and a doctors visit

Today was a good day.  I only had two of the three scans that I thought they were going to have me do and the masses above the hip appear to be getting smaller.  YEAH!!!!  I got to go to Central Park and we met a nice couple there and had a nice chat with them.  We ate some good food.  I talked to the kids on the phone.  We got chocolates from across the street and donuts using our Dunkin' Donuts gift card.  We stopped at a book store and perused a little.  It has been great spending time with Angela.  She gave up an invitation to a Relief Society activity to spend time with me on our night before surgery.  TRUE LOVE!!!

Speaking of surgery, they are going to do the chest surgery as planned.  It will not be as long as the abdomen surgery and the recovery should not take as long.  It will be more painful so I will need to stay ahead of the pain.  The doctor said I should be eating by Friday night.  It took me a week last time just to get ice chips.  The sooner you are eating and making room for more to eat, the sooner you get our of the hospital.  Pray that I will not have a pesky drain that just keeps on giving and giving and giving.

I feel better about things today.  I realized that I had lost focus a little bit.  I just want to be done with this whole thing.  However, I have a hill to climb and lessons to learn.  I need to be willing to sacrifice some things that do not matter in the eternity and may not even be good for me in the present, but are things that my temporal body enjoys.  I need to focus on things that will make me feel good spiritually and physically and help me maintain a relationship with our Father in Heaven.

The doctor reminded us of the two trials that he recommends we try to get into.  We have to see if the insurance will pay for the surgery part - installing a catheter in which the medicine can be injected.  The medicine is free as part of the trial, but installing a catheter is not part of the covered cost.  There is another study in Maryland at the National Cancer Institute that is free if I can just get there.  We have some work to do to see if we qualify for the trials.  We will work on that this week.

Well, I have to be at the Hospital at 8:30 am - I am the 4th surgery of the day for my doctor.  Angela and I are going to start our bedtime routine.  I am not sure why I should bother getting rest - I will be asleep most of the day on Thursday anyway!

Thank you for all your prays, thoughts, love, and support.  We could not do this without your help!

-Doug-

Pics from NYC

At the Ronald McDonald House in line for dinner.

On the way to get groceries

June 3rd - Arrived in NYC

We flew out this morning at 8:45 am, had a layover in Minneapolis, then on our way LaGuardia airport.  We took a taxi to a friends apartment to get a sleeping pad, then on to the Ronald McDonald House.  We caught dinner just in time, then went grocery shopping.  We are unpacking our things and getting settled in.

The plane rides were uneventful, but we did have more turbulence than last time.  Angela got a really bad headache and was very glad to get off the airplane.

The people here at Ronald McDonald House are so wonderful.  They will do everything they can to make your stay as comfortable as possible.  

I have to be at the hospital at 7:00 am to get ready for a CAT scan.  I will also have a doctors visit, PET scan and an MRI before the day is over.  We will keep you posted in the results.

This visit has been interesting for me.  I feel more tired and there is not the excitement of a new adventure.  I pray that I am doing the right thing.  Please pray for us that we make the correct choice tomorrow in regards  to the surgery.

We found out earlier this week that there is an unidentified mass in my abdomen above my left hip.  The scans tomorrow will tell then if it is cancerous or not.  It may just be fluid from my first surgery - let us hope. 

I know that Heavenly Father guides those that trust and put their faith in him.  I hope that my actions have shown that I have real faith.  There is so much I need to improve on.  

We love you all and are so grateful for all the support that you give us.  Please pray that the Lord's will will be done during this visit.

-Doug-

Update - May 7, 2014

Today I am starting session three of my maintenance chemotherapy. This regiment has been OK - as long as I have taken my anti nausea pills. We are gearing up for the next surgery. We can't thank our family and friends  enough for all the help they have given and will give our family during this busy time. 

I want to take a moment to thank Mom Kotter and Mom Minert as Mother's Day is just around the corner. Thank you for your unconditional love and support. For your positive attitude and happy outlook on life. You give me strength and hope. I know that all will be well when you are around.

A special THANK YOU to Angela.  She is being a wonderful spouse and a terrific Mother.  She sacrifices so much make sure that the rest of us are taken care of.  She even finds time to help and lift others who are in need. I LOVE YOU FOREVER!

We have our flight itinerary for the next surgery. We fly out on June 3rd and return on June 19th.  They will be removing tumors from my chest area - mainly around the heart.

I know that Heavenly Father will watch over me during this time.  He is in charge and will do what is best. My family is eternal - life is wonderful!

Thanks again for all your prayers, love, and support. We are truly lifted up by them.

It is so good to be HOME!!!

We were able to fly home on Sunday.  On Friday, the doctor pulled out the last tube.  What a feeling to be free of all unnatural appendages.  The doctor said we could go back to Utah as soon as we wanted so we moved our tickets to Sunday.  We were so excited.  We did have a fun day on Saturday - being our last full day in NYC.  We went to the USS Intrepid aircraft carrier.  We were able to tour a Cold War era submarine, look at the flight deck of the USS Intrepid, and look at the Space Shuttle Enterprise.  It was a ton of fun.

We took a bus to the theater to watch the  Broadway show Newsies.  This was a birthday present to Angela from her sister.  It was a really great production.  They cast did an amazing job.  Angela was singing along with the music - having a great time.  It followed the Disney movie story line with some minor adjustments.  We both had a wonderful time.

After the show, we took a stroll to the New York Public Library - where the big lion statues are.  We took a bus to Central Park and enjoyed a few minutes looking at the 'pond'.  We talked about how New York is so different than Orem.  We noticed that there are smaller families and everyone is stacked on top of each other.  We did see more dogs than I thought I would see.  There is very little open space and all the buildings are all really tall.  You always feel like you are in the shadow of something.  There was a lot of construction going on - that made us feel at home ; )

Every night at the Ronald McDonald House, volunteers bring in dinner.  It was great to see all these people sacrificing their time and donating the food for the patients and families at the House.

Well, I have been at Huntsman today.  I started a new chemo regiment - 5 days on then 2 days off for two weeks.  Then a week off.  I will do this three times before going back to NYC for my second surgery.  All has gone well so far - we will see how I feel after 5 days of chemo.  Fortunately, we will be able to self administer the chemo at home for the next 4 days.  This will save us so much time and allow me to work more.

Thanks again to everyone who took care of our family while we were gone.  We never worried about their safety and knew that they were being loved for us!

Out Free and Clear

Out Free and Clear :)

Doug was released from the hospital last night at 6:30pm.  He was able to come home to the Ronald McDonald house with me.  Hurray!  Unfortunately the mattress was too hard for Doug post surgery so he had a rough night.  We spent a large part of the day hunting down another solution.  Bed Bath and Beyond came through for us with a 3" memory foam matttress topper.  Awesome!  He had a nap on it and said it was better.  Hopefully tonight will be better.

He did a lot of walking today and did pretty good.  Unfortunately he didn't drink enough water and we are eating different foods so his bowels were giving him a lot of pain tonight :(  We'll pump the liquids and get more veggies!

Doug still has his shoulder/neck drainage tube.  They checked it today and it was draining too much.  I've watched today and there is too much to remove tomorrow either.  So we will see..... maybe on Monday.  We see Dr Laquaglia tomorrow morning and we'll see what he says.  If there is any way we can get away with it, we want to fly back early.  I haven't checked with Delta if that's possible but we really miss the kids and want to come home.  We'll try and play a little while we are here in the city but we have been gone enough.....

On a fun note my sister bought us Broadway tickets to Newsies!  Our first Broadway play!  We go on Sat :)

The Ronald McDonald house where we are staying is amazing!  It is designed for pediatric patients and their families to stay during treatments and medical care.  I talked to a family today that has been coming for 5 and a half years!  Man.  Talk about a long fight.  The little girl is now 9 or 10.  The social worker at Sloan Kettering said Doug and I could stay here because Doug has a pediatric cancer and a pediatric surgeon.  Every evening at 6:30pm different companies come in and cater dinner.  They have 4 huge kitchens with four fridges in each and 4 dishwashers.  We have an assigned spot in a freezer and fridge as well as locked pantry space.  They have muffins and bagels around 9am.  There is a big living room with 2 grand pianos.  Laundry on every floor and they provide the detergent!  Downstairs is a big playroom, music room, and a computer room.  Amazing!  Such a blessing to be here!

Say Good-bye to "Larry"

Exciting news - Larry and I were disconnected.  He has been a faithful companion, but the time has come for us to separate.  The doctor stopped the medication I was on that required me to need Larry for this long.  I am eating and drinking well so I don't need the extra fluid through the port.

I still have the chest tube, but I would rather carry around the catch basin than have to push around the pole.  My fluid output is getting smaller - a little at  a time.  We hope that the chest tube will come out in the next day or two.  The shoulder drain may take a little longer.

The stomach staples should start coming out in the next few days.  They take half out (every other staple) then wait a day or two then take the other staples out if all is well.

They say I am recovering nicely and just to be patient as I wait for the drainage to lower to an acceptable level.  Angela has been working on artsy stuff; I have done some sudoku.  We are enjoying the time together.  We have been able to see the kids via web conference.  That has been really special for us.

Thanks again for all your prayers, love, and support.  We could not do this without you!!!

Lots of Love - Doug

Happy Saint Patty's Day!

No Cancer In the Liver

Hello Everyone - We just wanted to update the status of the "liver".  I had the MRI a couple of days ago and the doctor reported that there is just a pool of blood in the liver - NOT CANCER.

HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is a great blessing.  This means that they are essentially going to ignore the liver and not worry about it.

Heavenly Father is truly blessing us and watching over us.

I will be in the hospital until my chest tube drainage is below a certain point.  It will be a few days.

My bowels are moving along nicely.  My stomach area is feeling better.  They say the incision looks really good.  All things to be really grateful for.

I could start smelling myself, so Angela helped me with a sponge bath and new clothes.  (Showering with tubes is a bit tricky - so we don't even try.)

Thanks again for all your prayers and love.  I feel lifted up by your faith, prayers, and love for me and my family.

Thank you -Doug-

MRI on liver

MRI on the liver today

We moved off the icu to the regular pediatric floor.  Doug's chest tube is still putting out too much so he will have that til sat probably.  He did get to have the epideral and catheter out so less tubes :) The swelling in his neck has stayed down because of the drainage tube.

He had an MRI on his liver today.  There is concern that there might be cancer inside.  The official results aren't back yet but the dr said unofficially it looks promising.  The mass looks like another benign clump of blood vessels.  There's a medical term for that but I forgot.  Mel, where are you when I need you?  :)  We really really hope that is what it is.  Doug is exhausted tonight - laying still in the MRI really wore him out.  So he is already asleep (its 9pm).  We'll report more tomorrow.

6th day after surgery - progress

Well, today has been an eventful day.  I was awakened early in the morning by a throbbing in my neck.  Yesterday, my neck (where the lymph nodes were taken out) swelled with fluid until it was quite uncomfortable - painful in fact.  So, the doctor drained the fluid and put on a bandage.  Even before going to bed we could see the fluid building up again.  So, it was no surprise to me that my neck started hurting again - I just was not expecting it at 4:00 AM.  We figured out that ice packs took the edge off the pain.  We made it through the day and in the afternoon (about 3:30 pm) the doctor installed  a pump and pumped out all the fluid.  The pump also sucked down the skin tight so the tissues would squeeze together and somehow stop the leaky drain.  My neck is still a little tender in places but there is no pain.  This will need to be in for a couple of days before they consider taking it out.

The good news is that I did get one of my chest tubes taken out - the smaller of the two.  (This may have happened yesterday).  So, at least I don't have any more tubes than I had before.  Tomorrow looks really promising for the chest tube, epidural, and catheter to come out.  I will also be changing rooms tomorrow.  It will be a BIG day.

I was able to start eating solid foods today.  I had 3 vegetable pot stickers then called it good.  I do not want to over do it.  So far it is settling well.  We will see how the night goes.

The BEST part of the day, was a visit by Elder Berube and Elder Richardson (or Richards, from Idaho).  Many of you know Elder Berube from our stake and our family connection (his sister is married to Angela's brother).  They brought a wonderful spirit with them and shared an inspiring message with us.  They administered to me and made Angela cry.  It was such a wonderful experience to have them here.  They are full of faith and ready to do whatever the Lord asks of them.

We hope so much to leave a positive impression on the staff here at MSKCC.   Angela has already enlightened some people that Mormons are Christian.  We will try to follow the spirit as we interact with different people.

I am hopeful for the future and know that Heavenly Father and Jesus are watching over us.  They know each of us and all of our trials.  If we trust in them, we can accomplish all things and accept all things that we are sent here to earth to do.

Tha ks again for all the love ans support.  -Doug-

4th day awake after surgery

I was told that the first three days after surgery are the worst, then it starts getting better from there.  I think that is true in my case.  I don't have some of the sharp pain when I cough and I am able to do 4 laps at a time.  I technically should be moved to another unit since I am doing so well, but they are keeping me here for now.  I think it is easier for the doctor to track my progress.  

They say my incision is healing well - I have not counted the number of staples though.  I feel bloated.  I have 25 extra pounds of fluid that should come off in the next few days - that will help.  I feel something happening in the bowel area - anticipating the big breakthrough.  

There is still tightness and soreness, but I did get a 'sponge' bath of sorts today.  Feels better to feel cleaner.  It will be nice when the chest tubes come out -  they say it will be easier to breathe.  The temperature of the room fluctuates somewhat during the day - we finally decided to ignore it instead of changing the thermostat multiple times during the day.  Angela is working on another wonderful painting.  Most of the staff have commented on how they like it.  I am sure it will be one of her best.

I am getting some fluid build up by my neck incision (on the left side of the neck, by the collar bone).  One of the doctors said it was a common side effect with lymph removal.  They will eventually go in with a needle and drain it if it does not resolve itself.  

Thanks again to everyone for their prayers and help with our children.  We truly feel loved, supported, and watched over.

Love to you all.   -Doug-

Mormons are Christians?

Mormons are Christian?

We had to be at the hospital at 6am thur for Doug's surgery.  They took him back at 8am and then all I had to do was wait..... and wait..... and wait (the surgery wasn't done til after 6pm).  I knew this beforehand so I came prepared.  I brought books, a painting, etc.  

I set up in the cafeteria and started painting - for 4 hours.  That is not a normal activity for a hospital cafeteria.  I chose this because I was under a lot of stress and painting helps calm me down and is a gentle distraction.  It turns out to be a great conversation starter also.  A lot of people here are Catholic and the painting really touched them. Conversation goes like this:

"Where are you from?"

"Utah"

"Oh really? Are you Mormon?" (everyone from Utah is Mormon?!?!?)

"Yes I am."

Pause.  They look at the painting.  They look at me.  The painting is Annie being held in Jesus' arms.

"Mormons are Christian?"

The first 2 times this happened it was kind of fun.  I explained what our real name is, etc.  By the time I was on the 4th person I was ready to beat my head against a wall.  Either we are doing a poor job of opening our mouths and letting people know what we really believe and what we are really like, or someone is working overtime to spread the wrong impressions.

Or both.

So lets OPEN UP FOLKS! I haven't ever gone off on missionary work before but this experience really made an impression on me.  We need to talk to everyone around us, about everything.  We don't have to plan a religious conversation - just be open and friendly and God will direct the conversation.  I've heard this misunderstanding about us and Christianity is common but until I ran into it 4 times in one day I didn't really believe it or see how prevalent it is.  My goodness!   Sigh

Anyway I paint in Doug's hospital room when he takes a nap.  If I feel like more missionary work I'll set up in the cafeteria again :)

How am I feeling?

Angela mentioned that she keeps getting asked how I am feeling.  I appreciate all the concern and love that so many are showing.  I will to describe how it feels after major abdominal surgery.

First of, I feel like I have a watermelon stuck in my belly.  Everything is swollen and tight - please no thumping.  The epidural keeps things from getting painful - keeps it at the 'sore' level.  The chest tubes coming out the side of me are sore on occasion - like when I am done walking.  They say it takes 14 laps to make a mile.  I thought I was done with laps at Huntsman, but I guess not.  The incision down my stomach seems to be healing well and I do not have the pain thanks to the medications they are giving me.

One of the most annoying things is ITCHING!  I heard on the radio once that it is psychological and that you can think away certain itches.  I have been trying to ignore them - it works sometimes.  Angela has scratched my back a couple of times and it felt OOOOHHHHH SO GOOD!

The days go by somewhat quickly.  I have a routine where prayer and thanksgiving are in each step.  I wake up stretch in bed for a bit.  I see if I can stay awake.  If so, I get help and get out of bed into a chair.  I sit in the chair and do breathing exercises for 15-30 minutes.  Then I go for a walk.  Yesterday I did one lap at a time; today I am trying two laps at a time.  I am up to four laps so far - almost to go out again.

Coughing is a tricky thing, because it cause temporary pain (not too bad though), but is really for my diaphragm and lungs.  Major sniffing also helps the diaphragm.

Well, I am sore and I have to shuffle when I walk - but they tell me I am making progress.  The goal is for my bowels to start working on their own.  A 'fart' will never have felt so good (sorry if this was too crude for anyone).

I love you all and pray for you as you pray for me.
-Doug-

Missing the Kids

Posted by Ange:

This is a thoughts and feelings post so if you are looking for facts, please wait for the next post.

We are really missing our kids now.  We didn't miss them this quick in Vienna but there we were having fun and here.... not so much.  Annie has figured out that we are gone.  She did pretty good the first few days.  Friday night she didn't sleep well and yesterday when she woke up from her nap she was very, very sad.  I cried to hear that she is struggling.  She is so young and needy.  She was with me every part of every day.  We had our own songs and jokes and stories.  I would hold Annie close at the end of the day and sing songs and pray and think.  Having her snuggled against me helped the world seem right.

Only a very compelling reason, life or death actually, would cause Doug and I to be so far away for so long.  Families are meant to be together, forever, so being apart feels wrong. Of course.

So I prayed and asked Heavenly Father that He would send comfort to the kids, especially Annie.  Let them know that even though we are still far away, we love them, and think about them, and are aware of them.  I don't want Annie to forget us while we're gone.  I want her to still know our voices and what we look like.  I asked Heavenly Father that the kids could feel our love through the love of the people who are taking care of them.  I asked my sister to give Annie a kiss for me.  I wish I could feel her soft cheek and smell the perpetual peanut butter in her hair.

And then the epiphany struck and I had to laugh at myself.  I'm sure Heavenly Father was smiling too.

He knows exactly how I feel.  He is doing the same thing.

We were with Him before this life and He held us close.  We had our own stories and songs and laughter with Him.  Only a very compelling reason, spiritual life and death actually, would cause Him to send us down here to earth.  Families are meant to be together, forever, so being apart feels wrong. Of course.

He wants to send us comfort.  Even though we are far away, He wants us to know that He loves us, and thinks about us, and is aware of what is happening.  He doesn't want us to forget Him while we are gone.  Heavenly Father wants us to know His voice still, and what He looks like and is.  He wants us to feel His love through the love of other people around us, who are helping to take care of us.  How His heart must ache as we struggle and are very, very sad.

He's been doing this for a long time, so I can do this for 3 weeks.  I guess we learn the strongest, most distinct lessons when we hurt the worst.  Wish there were an easier way, but I probably wouldn't learn the lessons as well or as deep.

Enjoy a Few Pictures

Wasn't it great to hear from Doug!  Here are few pictures Angela emailed me and asked me to stick on the blog.

Also, feel free to follow us on Facebook for more information.  Looks like Doug and Angela had a little fun in NYC before surgery.

Doug and Angela at the Ronald McDonald House--home away from home.

Top of the Rock in NYC!!

The view from Rockefeller Center. Yes, that's the Empire States Building. 

Doug before surgery.

Post-Surgery Fun

I have chosen to keep my eyes closed when it comes to some of the tubes coming out of me.  I have a chest tube that I have only seen the drainage from - two of them actually.  They connect on the side of me so I can't see them anyways.  They should come out today or tomorrow.  I had a stomach tube that came trough my nose - that has been taken out.  I used to be on oxygen, but they took that away.  I have other drainage tubes.

I did not realize it, not having had this major of a surgery, that your bowels go to sleep and have to wake up.  The best way to get them to wake up is to walk around.  To walk around, you need to feel well enough.  To feel well enough, they give you medication.  I have an epidermal and they feed other things into my port as needed.   

My abdominal area is very tight but we have been walking (two laps so far).  I hope to get in 3 more laps today.  These laps are not as big as huntsman laps, but they take longer as I shuffle down the hall.

Gotta take a nap - following asleep.  -Doug-

Surgery Went Well

Angela texted me and asked me to share.

Good News: This first lower abdominal surgery went well.  Doug didn't lose much blood (something they were concerned about) and overall had a great response to the surgery.

Bad News: Doug's liver doesn't look right.  The surgeon is worried that he might have cancer inside. Doug and Angela won't know for sure until next week when the results of the biopsies come in.

A huge thank you to all who have been keeping the Kotters in your prayers.

Pre-Surgery Clerification

We met with the doctor today to go over the surgery and answer any questions we had.  We got some clarification about the surgery and realized we had misunderstood some aspects about the surgery.  This surgery is focused on the abdomen.  There will need to be a second surgery to remove the tumors in the chest area.  There will NOT be an incision from the neck to the pelvis.  The incision will be from the bottom of the sternum to the pelvis. This actually makes sense, since my chest bones would be in the way if they cut any higher - why didn't I think of that before?  The doctor can get the tumors that are in the lower part of the chest, but the ones by my heart he will have to do at a later time.  But, he is going to get the tumor out of my neck.  That is just a small incision he said.  So, he is going to get all of the tumors out that he is able to.  There are tumors throughout the abdomen, some by the rectum and liver. He is going to remove part of my liver that has a mass in it.  I may also lose my spleen.  Complications are possible, but we will not speculate.  We will trust in the blessing from heaven to guide the doctor's hand.

This surgery will last between 6-12 hours (down from 12-14 hours like they told us before).  Angela was great at asking the pointed questions about the surgery, the outcome, and if it is really all worth it.  It came down to this - we are going to do everything we can (as the Spirit confirms) to rid my body of this cancer.  There are not many survivors, but there are some.  There is another treatment at the National Cancer Institute in Maryland, involving immunotherapy.  They recommend that I look into that when I have finished the NYC protocol.  I will have chemotherapy after the first surgery, then have the second surgery about May - if all goes well.  Then I will have radiation and chemotherapy.  The doctor did say that the abdomen may have to be done in two parts also if there is too much bleeding.

The doctor kept asking me if I understood what was going to happen with the surgery.  I assured him that I understood what he was saying, but never having had the surgery before, there would probably be things that surprised me or things that I did not anticipate with the recovery.  This answer did not seem to satisfy him completely.  It made me think of times when you tell a child something and they nod yes like they understand, but do not really understand because of their lack of life experiences. He would also use the phrase, "I don't mean to upset you, but ..".  In looking back, I do not recall acting upset or saying things that would suggest I was upset.  He must have many patients that do get upset and concerned when they hear the prognosis for this type of cancer.  Most (almost all) of his patients are children.  As a parent, I think I would show more concern and be upset if it were my child going through this.

I have received a confirmation form the Spirit and that is good enough for me.  I know that it will be a tough recovery, but He will help me through it.  All things can be accomplished when our Savior is with you.

Please pray for me and the doctors that all will go well and that I can recover - according to His will.
I am trying my best to exercise the faith to be healed so that whatever happens, I know is His will.
Thanks again for all that you do for me and my family.

-Doug-