As Good as it Gets!!

The problem with not writing for several weeks is when I do write, I have a lot to catch up on.  I will attempt to explain what has been going on and keep reading because the end will be good news.  After 24 days in the hospital and finally able to eat food, Kevin came home and was happy to do so.  He came home with several additional medications to solve the problem with GVH and new side effects to deal with.  He came home on a Sunday and was happy.  Then Monday morning he got up and looked in the mirror and everything wasn't quite so happy any more.  The first affect of steroids had swollen his face to something that he didn't recognize when he looked at himself.  That wasn't fun.  In addition to swelling, he is now diabetic for the duration of the steroids and takes 5-8 insulin shots a day.  Steroids also causes loss of muscle and that has caused some pain in his legs.  Kevin has been walking every morning to try to keep the problems with his muscles manageable, but stairs are not fun.  His new daily routine includes the insulin shots, 30 meds and two IV infusions in his line which take a couple of hours.  When we started this routine it seemed like it took all day and now it is pretty routine.  The visits to the hospital each week have gone well and have focused on continuing to watch for symptoms of GVH to return and so far no problems.  The doctors
started to reduce the steroids and therefore have to watch closely for GVH recurrence.  Kevin hit his 100 day mark while in the hospital on August 20th.  It was a little uneventful since he was hospitalized and it was apparent that 100 days would not be the end of this journey.  When Kevin was released, the doctor indicated that the steroid would further compromise his immune system and he would like Kevin to stay away from work, people and the public for an additional three months.  That did not sit very well with Kevin and he told the doctor he would take it one month at a time.  The past 30 days have become a little long and each day brings new anxiousness.  A couple of weeks after Kevin was home they started scheduling a whole bunch of tests.  Before the transplant they conducted a lot of tests for a baseline and at the 100 day mark all the tests would be repeated for comparison.  The past few weeks have been filled with these procedures.  Today was a big day.  Today we met with Dr. Petersen for a complete consultation and test results.  Here is where the story gets good.  Dr. Petersen started the consultation by saying that this meeting is a bit of a formality because the bottom line is that all the test results are great and everything looks goods.  In front of him is a stack of about 50 papers and he refers to them and says, "but since you are here we will go through each of the results".  This part was really good for us and I will summarize a bit for you, but this will give you some idea of all the things that are good and in contrast all the things that could have potentially been an issue.  Here are the doctors words, kidney and liver functions are excellent, chest x-ray looks good, proteins are good which means you are eating good and absorbing the nutrients you need, pulmonary tests are normal; which is rather unusual for most of our patients, all of your blood counts are fine; platelets are a little low but that is to be expected with all the medications we are giving you.  CT and PET scans show no active cancer cells and no problems with the lymph nodes.  Your immunoglobin level is actually in the normal range which means your new immune system is beginning to function.  The donor engraftment is near complete.  This test is called chimerism.  Chimerism indicates what portion of Kevin's cells are the donor and what portion are him.  The doctor indicated that anything above 95% is considered complete engraftment.  His whole blood cells are 97%, his T-cells (which are immune cells) are 91% and his bone marrow chimerism (cells in the bone marrow) are 97% .  These numbers mean that the donor engraftment is near complete.  At this point the doctor also indicated that GVH disease most likely killed any remaining leukemia cells.  Remember that Graft vs. Host disease is the donor cells fighting Kevin's cells to see which one stays.  We want donor cells, so GVH does good things, it just has bad side effects.  The big picture, no evidence of CLL (chronic lymphocytic leukemia) that long name for the disease Kevin has been fighting.  You are considered to be in continuous complete remission.  Now for the PLAN!  This is where we start to return you to your life, the reason you had a transplant to start with, to return to life and living.  Beginning in October you can begin your gradual return to society; work, family, friends, restaurants (that's the one I like) and the public.  Here's the important part, WITH CAUTION and WISDOM.  Since we are on the verge of cold and flu season your threshold for any symptom is very low and any sign of illness requires you to be checked.  Then came the good part, this report is AS GOOD AS IT GETS. 

What now.  Kevin continues to be on the insulin shots, 30 meds and two IV drips every day.  This is needed to maintain the health that Kevin has.  We will continue to visit the clinic once a week and have blood tests.  The steroids will be tapered over the next two months and the effects of them should then begin to go away.  Kevin will stay on medications for rejection and to prevent infections for 6 to 9 months.  That all seems simple to us, we can do that.

It goes without saying that Kevin is a happy man.  Kevin and Dr. Petersen exchanged a nice, long handshake as Kevin sincerely thanked him and with his eyes a little red expressed his gratitude for the good news.  Once again we find ourselves wishing there were words to express our thanks.  "Thank you" seems too simple for what Kevin has been given.  Today we think about so many people we have to be grateful for.  The medical team is the best, but we know that medicine alone has not healed Kevin.  Kevin's healing has come from faith, prayers and the power of the priesthood, and the people we love most have brought about that essential part of Kevin's healing. 

A couple of months after Kevin was diagnosed our Stake Patriarch came to our home to visit.  He brought with him a piece of the Italian marble that was used in building the Draper temple.  He had placed vinyl lettering on the piece of marble that said, "When you're ready to learn, the teacher will appear."  Patriarch Bringhurst's visit brought comfort and peace to our home and after our discussion with him Kevin and I had a strong desire to be ready to learn the lessons that would be ours through his cancer challenge.  Our 2 1/2 year journey has brought more lessons that we could possibly ever imagine and now from the perspective of looking back, we can recognize that these lessons might have not been learned in such a powerful way if we had not been given the opportunity that this challenge has brought to us. During the past couple of years as difficult moments have come we have tried to focus on what we need to learn.  We have often talked to the kids about the importance of learning what cancer has to teach us.  How tragic would it be to go through this whole experience and not learn the lessons and not come to recognize the teacher.  The teacher has been many people that have been there for us and helped us understand this part of our life, but most often the teacher has been our Savior, Jesus Christ.  Through the atonement of Jesus Christ, we have come to recognize that Jesus personally knows what our needs our.  Kevin knows that his Savior knows what cancer feels like and has blessed him accordingly.  Every time someone has asked me how I am doing, I tell them I am good and often they look at me like are you sure.  I am sure because my Savior has comforted me every day and every day he has given me reason to find joy and to have hope.  Cancer is not a challenge that we would have ever chosen, but we can sincerely say we are grateful for the lessons that cancer has taught us.  I have attempted to write about a few of these lessons and I call them tender mercies.  Our journey is not over and I hope that there are still lessons to learn and I have not yet written all the important things I need to write, so I know I have a responsibility to continue to record blessings that are ours.  I have come to realize that the Lord's hand is in our lives every day, but I also remember that some days I was so busy with life itself that I forgot to look and acknowledge His hand.  I am grateful for this time in our lives when I needed to look and acknowledge everyday and everyday a tender mercy is given when we remember to look.  Life itself is a tender mercy and today Kevin is grateful for LIFE.

Kevin Has Something to Say...

If I were to share with you Kevin's two most used computer skills, I would have to say they would be "Forward" and "Cut and Paste".  Most messages I receive from Kevin are those that someone else sent to him.  Too many days in a hospital will start to do funny things to you and Kevin has been composing his own masterpiece.  Kevin has been working really hard on this project and he has completed it and it is certainly worth sharing.  He shared this with one of the PA's (physician assistants) earlier today and Kevin is now the most popular patient on the floor.  This has been passed around to all the staff and on our last walk, Kevin was stopped and told that his list made it to the staff quote board.  It's getting hard to even take him on a walk, because all the staff wants to stop him and comment on his list.  You must remember that Kevin has been in the hospital for 6 days and gone without food for 6 days so consider the source.   

Here is tonight’s top 10 list

Top ten things patients learn at the hospital

Ladies and gentleman number 10

·         Number 10 : The cancer patients haircuts all look the same.

·         Number   9 : Hospital clothes always have a gentle breeze

·         Number   8 : Bed sores take on a whole new meaning

·         Number   7 : Meet a lot of interesting people wearing silver and shiny objects

·         Number   6 : Only change of scenery you get is the TV

·         Number   5 : Would you like a glass of water with your I-V drip

·         Number   4 : Get to wear all those old hats and scarfs you’ve collected

·         Number   3 : Lose weight without joining Jenny Craig or Nutri-System

·         Number   2 : Highlight of my day is the nurses sponge bath

And the Number one answer of things Cancer patients learn at the hospital-

Number   1 : You get more pills than the street corner junkie

And that’s your top 10 list - ladies and gentleman.

Thank you – Thank you very much!

Now you ask me how is Kevin doing today.  Way too much time on his hands and way too much medication.  He's doing well and his sense of humor keeps everyone enjoying their job.  Still no food!  The doctor says if he's good tonight he can have ice chips tomorrow.  I told the doctor I'm going to bring a crystal goblet and a silver spoon for the occasion. 

I would try to end on something of a spiritual nature, but it just doesn't seem quite right today.  But really our ability to laugh at ourselves and the desire to make others laugh has to be a gift, and the fact that Kevin has this gift is a tender mercy for us all.

ENJOY!

The Road Just Got a Little Bumpier...

For months we have heard about GVH, also known as Graft vs. Host Disease.  Today Kevin finds himself having a personal experience with GVH.  On Friday he was admitted to the hospital without the sure signs of GVH, but being very precautionary they admitted him to watch him.  On Friday they took him completely off all food and even water and tested for any bacteria.  Have you ever found yourself hoping for a bacteria?  We were, because a bacteria would be much easier than GVH.  On Saturday they did start feeding him through his line, but that is not taking away his desire for food.  Over the weekend the symptoms of GVH were starting to appear, but the only way to find out for sure is with a scope, which they did on Monday.  Yesterday the results of the pathology report confirmed GVH.  What is GVH?  I will try to explain this in simple terms.  Our body recognizes its' own cells and recognizes foreign cells.  The way we protect ourselves from sickness and disease is that our body recognizes foreign cells and then fights to eliminate them.  Because of this, Kevin's body knows that he has foreign cells (the new donor cells) in his body.  A large portion of the medication Kevin takes has been to keep his immune system and the donor system low enough to fool his body into allowing the donor cells to exist.  Here is the conflict...we want the donor cells to fight hard to take over Kevin's immune system.  As the donor cells fight to exist, Kevin's cells recognize them as foreign.  The way this fight manifests itself is GVH and GVH symptoms attack the gastrointestinal system.  Why now?  Kevin was so close!  Actually with Kevin's type of transplant GVH typically appears between day 82 and 100.  Kevin is right on schedule.  We knew about GVH and we knew that 70% of patients get this, but of course we thought Kevin could be in the 30%.  No so lucky.  So what now.  The treatment for GVH is a high dose of steroids.  Steroids work well, but they have their own set of side effects.  Some of them being, even higher compromised immune system, high blood pressure, high blood sugar, increased chance of pneumonia and fungal diseases, swelling in the face, potential long term bone and muscle loss and the list goes on.  All that means new drugs and new precautions.  The other challenge of this high of a dose of steroids is they have to taper you off them gradually.  And then the balancing act of not tapering too soon and allowing the GVH to flare again and yet not having to stay on them for a long period of time increasing all the long term effects.  The steroids coat his stomach and intestines allowing him then to eat food and take oral medications.  Once that happens he can go home.  But that is a slow process.  Hopefully tomorrow he will get ice chips, then water, then clear liquids then finally start on food.  After each step they evaluate and make sure his system can tolerate it.  This will probably be a two week process.  That's the hard news. 

Now for the non-medical part of the story.  Kevin actually feels pretty good, that makes being in the hospital really hard.  His sense of humor is working well for him.  On Tuesday, when we were just waiting for pathology results, and there was nothing for the doctor to really talk to Kevin about they sat and exchanged bad jokes.  Kevin keeps the nurses and aides laughing and his sarcasm is at its' best.  I seem to be having a harder time with the closeness of the walls in the hospital than he is.  I have to say he is enduring well, really well.  They highly encourage him to get out and walk around the floor of the hospital 3 times a day.  In order to be out in the open he is suppose to wear a special gown and a mask and gloves.  Well his worst fault is non-compliance.  You all know Kevin has never looked like the cancer patient and he doesn't plan to start now.  He absolutely does not wear a hospital gown and we have always called his mask an accessory because he is usually wearing it as a bracelet.  So after two different speeches about what to wear in the halls, he semi complied.  He tied the yellow special gown around him like a super hero cape and he put the mask on his forehead so that when someone was looking he could slip it over his nose and mouth, and no attempt at the gloves.  What can I say, I have no control and the nurses have very little.  The most important thing we do is take it one day at a time.  It's really easier that way.  We have learned that disappointment only comes when we set our expectations too high.  This is a process and what he's working for is well worth it. 

Today the doctor talked to Kevin about the possibility of depression while being on steroids and he said "that can't happen with the three kids  I have".  That is so true, they are the best medicine that Kevin takes.  On Sunday the three of them spent most of the day at the hospital and we had the whole floor asking for invitations to the party.  Kevin needs only to "hang out" with them for a little while and everything just seems to be ok and he knows what it is he fighting this fight for.  We are so blessed and they have been there for both Kevin and I every step of this journey. 

A couple of weeks ago Tiff and Meg were talking to our Bishop's wife and reporting to her that we have had more family time than anyone could possibly ever want.  They said that all those Monday nights that we seemed to miss Family Home Evening, well we have made up for them.  We got it covered and family dinner hour, well when you can't eat out for 100 days you have more family dinner and family lunches than you can imagine.  Tiffany, Megan and Brandon you are the best and thank you for always being there for your parents.  The blessing of having a family that is always there for you is one of our greatest tender mercies.

A Little Bump in the Road

In the past few days Kevin has said that a few people have asked him why the blog hasn't been updated.  I could give a whole bunch of reasons, but really I thought that maybe people had heard enough from me, but thanks for making me feel good and asking.  Kevin took it into his own hands and gave me something to write about.  Sitting in a hospital room watching fluids drip over the next few days gives me lots of time to write.  Don't be alarmed.  Kevin's admission to the hospital is completely precautionary.  Any little symptom that is presented to the doctors is immediately reacted too.  Let me go back a couple of weeks and tell you what has happened.  A couple of visits ago, Kevin showed the doctor some little tiny red spots on his fingers.  This prompted the doctors to take a blood culture.  The next day, which was a Saturday, the clinic called and told him that he had a bacteria and needed to come into the clinic everyday for the next 10 days and get an antibiotic drip to fight the bacteria.  So to the hospital we headed.  We went back again on Sunday and then to the clinic on Monday for a visit.  They continued to watch the blood culture and to their the surprise the culture didn't grow.  They took 6 different bottles and only one grew and only a very little bit, so they began to think they had some type of a contaminant from an exterior source and he really didn't have a bacteria.  So on that Monday they took another culture to see if there really was a bacteria, but he would need to continue with the antibiotic for at least 5 days while the new culture would grow.  The easy way to receive the antibiotic would be from home healthcare.  So later that day home healthcare came with the supplies and the nurse to train us on how to hook up the drip through Kevin's central line at home.  A little more nurse training for me.  Because of some bowel symptoms the doctors had thought about giving Kevin his magnesium through the line daily instead of a pill.  Since we were now trained we could do both.  So we started administering the antibiotic and the magnesium at home through the central line.  It is actually pretty amazing.  The drug comes in a small bottle that contains a small pump that when hooked up to his line then pumps the medicine through the line.  No big infusion pump that you need at the hospital.  We finished the antibiotic, even though there was no bacteria after all and we have continued the magnesium through the line.  This solved the bowel problem and so everything was good.  And then Wednesday, the bowel problem returned with a pretty good vengeance.  Of course you think, what did I eat, but after 3 days, clearly it wasn't food and today when Kevin reported his changes Dr. Hoda was a little concerned.  He looked at Kevin and said I want to admit you to the hospital for the weekend and then he paused.  It was a long pause while he waited for a response from Kevin.  I think Kevin thought he was joking, unfortunately he wasn't.  Kevin tried to talk his way out of it, but he knew that really wasn't going to work.  As I have said before, no symptom goes without investigation.  Why the hospital?  Dr. Hoda wants Kevin off all food and liquid for 3 days.  In order to do this, he needs to receive an IV drip at the hospital.  That's why we are here.  In addition they will test for any bacteria and their greatest concern is if this could be the beginning of Graft vs. Host disease.   So watching him and getting on this minor problem early is the best course to take.  Waiting will make any problem harder to treat. Finally Kevin responded to Dr. Hoda and he said, what if I come back in tomorrow. Dr. Hoda said, "What is it you were planning on doing today."  Kevin really didn't have a good answer.  Dr. Hoda said, "Do you want to go home and have a steak before you come in."  Do you think maybe the doctors at the clinic know Kevin?  Dr. Hoda said you can go home and pack a bag and come back at 5:00 o'clock.  So we went home and I have never seen it take someone so long to pack an overnight bag.  We made it to the hospital at 6:30 or so and everyone on the 8th floor was anticipating his arrival.  They are so nice to him and it really isn't a bad place to be.  Kevin feels just fine so it was really hard for him to think he needs to be in the hospital.  But he does what he is told and realizes that this whole process wouldn't be worth it if we disregarded what that doctors told him and didn't appreciate the fact that their interest is in Kevin's health and ensuring that every precaution is taken for the success of the transplant.  We do appreciate all that this team does for Kevin and the personal interest they take in his care.  Kevin is in good hands.  

The good news.  Kevin has made it to day 77!  Only 23 days of isolation remaining.  The walls of our home were definitely starting to close in around him so different walls for a few days can't be that bad.  Kevin has felt the best since the transplant the past couple of weeks.  He has accomplished more things on his "honey do" list than I could even imagine.  I just walk around the house and add things to his list.  I love his game!   He continues to do some work at home and that is good for him.  He is still walking every night and has added a lap in the past couple of weeks.  He has finished another book and brought a new one to the hospital and basically he has felt normal and is ready to get on with his new life.  It was getting a little hard to keep him down so this little bump will give him something to concentrate on for a week or so.  

Everyday Kevin and I express gratitude to our Heavenly Father for all of you who care so much.  You are blessing our lives. Through your faith and prayers Kevin is being healed.  Today I read from the Book of Mormon in Moroni Chapter 7.  Moroni  is writing the teachings of his father Mormon about faith and miracles.  He asks, "Have miracles ceased, I say unto you nay."  Through faith in Jesus Christ, miracles continue in our lives today.  Through Kevin's own faith and the faith of family and friends we are seeing a miracle.  This miracle will forever be a tender mercy to our family.  

27 YEARS AGO....

Summer always seems to go by so fast.  I thought this year might be different.  We would just be sitting around enjoying the long days of summer.  Well I don't know where the past month has gone, but summer is going by too quickly.  Saying that is a good thing, since I was concerned about 100 long, boring days.  We are at day 58 and we are on the downhill side of isolation.  Kevin has had a really good month.  He continues to feel well and the biggest challenge has been to keep inside these four walls.  He has asked the doctors many times, "If I feel so good and my blood count numbers are so good, is there a chance that some of the restrictions might be lifted."  In such a nice way the doctors say, "That is a really nice thought, but we'll talk about that at day 100."  A week ago Friday, the Physician Assistant we saw was Ali.  Ali is a cute, young doctor that looks like she is Megan's age.  She came in the room and asked what our plans were for the upcoming 4th of July.  Kevin's response was, "I am going to spend the first couple of hours digging in the dirt in the garden and then we are going to a crowded, public swimming pool to swim without sunscreen and then we are going to find the busiest restaurant in town and eat."  Ali's response was, "then I will have a hospital room ready for you on Tuesday."  Luckily the entire team at the Bone Marrow Clinic have a sense of humor and are well accustomed to Kevin's sarcasm.  Ali continued to ask Kevin the regular list of questions about how he is feeling and then she told  him, "I wish I could have a whole bunch of transplant patients just like you sitting across from me and telling me all the good things you just told me.  You are rockin' this transplant."  It is true, Kevin is "rockin" this transplant thing and we are grateful.  Grateful for a wonderful donor, grateful for faith and prayers and a loving Heavenly Father who watches over Kevin.  On Friday we went to the hospital for our doctor visit.  Kevin had a couple of minor issues he was concerned about.  One of them being some little tiny red spots under the skin on his fingers.  The doctors were a little perplexed, but nothing goes uninvestigated.  Dr. Hoda suggested a blood culture on Kevin's central line.  The central line has three different lines and they cultured all three to identify if there was possibly some sort of bacteria in one of the lines.  They also continue to monitor his medications.  Kevin is at a point where they are trying to taper the medications and Kevin feels great about that.  On Saturday, Kevin got a call from the clinic. They called to tell him there is a bacteria in one of his lines and we needed to go to the hospital to begin a 10-day infusion treatment to eliminate the bacteria.  So that's what we did.  The infusion is a small bag of an antibiotic that only takes 30 minutes to drip.  So we know what we'll be doing for the next 10 days.  We go back to see Dr. Hoda on Monday and they may arrange to have the infusion done by home health care or maybe we can do it at Altaview Hospital, which is closer to home.  We can do anything for 10 days.  This bacteria seems simple compared to some of the more serious complications.  Kevin still feels good and continues to walk every evening.  Any sun at all would be very serious for Kevin, so we enjoy our walk when the sun goes down.  He finished one good book and has started another one.  He is able to do some work at home each day and Brandon and I are learning negotiation skills as we get to listen to Kevin on his speaker phone on conference calls talking about buying tractors and stuff.  Each time we visit the clinic, the thought that comes to my mind time and time again, this is just a little too easy for us.  Kevin is being blessed. 

Yesterday Kevin and I celebrated our 27 year wedding anniversary.  I could tell you it has been blissful every single day since our wedding, but that would be a little unrealistic.  But what I can absolutely tell you is I have never felt more joy and happiness.  I have reflected on the blessings that we enjoy because of our marriage in the temple.  I told the kids today in Primary that the decision I made 27 years ago to be married in the temple was one of the most important decisions I have ever made in my life.  For the past 2 1/2 years the temple has been a place of comfort and peace and where many answers to prayers have been received.  Kevin's name has been on the prayer roll in countless temples and he has felt the strength of those prayers.  The temple is a tender mercy.  Tiffany was in Chile serving her mission when Kevin was diagnosed.  Figuring out how to fight cancer was hard, but for Kevin figuring out how to tell Tiff the news was much harder.  He knew Tiff well and knew that she would want to be here with her family.  Kevin loved his mission so much and his heart broke when he thought of her maybe wanting to leave her mission early to be at home with him.  He just couldn't do that to her.  He was determined that she would complete her mission.  After much prayer, the day came that we would talk to her on the phone and Kevin would tell her of the sad news.  Tiff's mission president had called her the night before and told her she needed to come to the mission home the next morning.  He didn't tell her why.  Tiff's first thought was what she had done wrong.  But she remembers thinking just don't let it be something with my family, I can't handle that.  Tiff and her companion made the couple of hours journey from her area in Lampa to the mission home.  President May told her that she needed to call home.  Heavenly Father had prepared her.  She can now see that she was strong enough.  We talked with Tiff for about 45 minutes and a great peace filled all our hearts.  It would be okay.  At the end of our conversation Tiff said, I feel like I would like to sing you a song.  She was hundreds of miles away from home at what would be one of our family's hardest times, but she knew something with an absolute surety.  In her beautiful Spanish, Tiff sang "Families Can Be Together Forever".  At that moment she knew it, Kevin and I knew it and Megan and Brandon knew it.  We are a forever family and always will be.  That is the blessing of the temple.  There is nothing Kevin and I could have ever done that would be more important that our temple marriage and the sealing power for our family.  Cancer can cause confusion and havoc, but it can't break that forever bind that is ours because of the blessings of the temple.  This week Tiff received a phone call from Chile.  Her first baptisms were a father named Ricardo and his son Felipe.  Tiff and her companion continued to work with this family until finally the mom Patty was baptized.  Kevin and I had the opportunity to meet this family when we visited Santiago.  As we arrived at their home, Ricardo came running out the door grabbed and hugged Tiff (he figured he could do that now that her parents were with her) and then he grabbed Kevin and wouldn't let go.  We didn't understand the Spanish words, but we knew what he was saying.  With tears flowing down his cheeks he expressed his love for us that we would send our daughter so far away from home to bring the gospel message to his family.  We instantly loved the Sanchez family.  The Sanchez family have three daughters, none of them seemed too interested in the gospel message.  A few months after Tiff's mission she was able to return to Chile to do her student teaching.  She visited the Sanchez family one weekend and Sammy, the 17 year old daughter told Tiff that she had been baptized.  On Tuesday of this week, the Sanchez family called to tell Tiff they are preparing to go to the temple and to be sealed as a family for time and all eternity.  There oldest daughter and her husband have been baptized and they want to have there little boy sealed to them also.  Tiff called me from Provo (where she is being an EFY counselor for the summer).  She was crying as she told me the wonderful news and these were her words.  "Mom, this is why I went on a mission.  I went to find a family that needed the blessings of the temple that my family enjoys."  The knowledge that "Families Can Be Together Forever" is a tender mercy.

Your Prayers Are Being Answered

This week our hospital schedule was great.  Tuesday we went to Alta View for Kevin's lab work.  Alta View Hospital is literally down the hill a couple of blocks, so that made the visit a quick one.  Kevin went in, they took 3 tubes of blood and we were out of there.  A record breaking 15 minute visit.  Kevin's lab results are now available to us on line the same time they are available to the doctors, so we come home and wait to check the results ourselves.  Can't complain about that visit.  Today we went to LDS Hospital for labs and a visit with the doctor.  On Thursday we saw the results on-line of the Chimerism test, which is the test that shows the percentage of cells that are the new donor cells and what is left of Kevin's cells.  We were shocked and didn't dare comment on them until we met with the doctor today to make sure we really saw what we thought we saw.  You may remember that we were hoping for a 50/50.  What we got was a 97/3.  Amazing!  97% donor cells and only 3% of Kevin's cells.  We can definitely say that Kevin is engrafting.  Today we first spoke with Rachel the nurse that actually gave Kevin the stem cells on transplant day.  When she saw the results of the test, her comment was, we need to find out who that donor is and get him to donate more.  Once again we think so much about the donor and what he gave and so desire to know him and express our gratitude.  We are discovering that what the doctors first tell us is worst case scenario so the 50/50 was a low estimate, but the doctor today told us that he has seen percentages in the 80's but 97 couldn't be better.  In addition to that news, Kevin's platelets were up today.  They had actually been dropping the past 3 times and there was starting to be some concern that maybe Kevin had a virus or something that was causing that, but today they went back up so that was a good sign.  Kevin has had a good week.  He spent quite a few hours on the phone and computer doing work.  He walked every evening and even increased his walk from two times around the park to three.  He's doing about 2 miles each night.  Way to go Kevin!  The walls of our home are starting to close in around him, and it's getting a little harder to remain in isolation.  That is going to be the challenge for the future.  It is hard to understand that with such good blood numbers and 97% engraftment that this challenge needs to go on for two more months, but actually the risk of GVH (Graft vs. Host disease) remains for up to 3 years and is more likely in the next few months than it was in the past month.  So it is important that Kevin continue to follow the outlined protocol. 

When Kevin called his parents and reported the good news of the test results they asked him how that happened and Kevin's comments was "that is easy, there are so many people praying for me".  Kevin absolutely knows why the transplant is working.  It is the prayers of each of you in his behalf and we want you to know that your prayers are being heard and they are being answered.  There is nothing greater that each of you can do for Kevin than to offer your faith and prayers.  I have expressed this to many, but I will express it again.  There have been many times that we have been given the opportunity to pray for the health and benefit of others around us.  We have done so, but often I felt that I wish there was something more that I could do to help.  It seemed like my prayers maybe weren't enough.  What I haven't felt before was the power of so many people praying for you.  It is an overwhelming feeling.  And I now, and will forever, know that prayers are enough.   Kevin was told he had cancer on a Tuesday evening.  We met with the Oncologist on Friday and didn't want to tell anyone about his diagnosis until we really knew what it meant.  So for four days Kevin and I carried this burden on our own.  Of course we prayed often for peace, understanding and an ability to overcome this challenge, but those four days were long and lonely.  After meeting with the oncologist we then began sharing our burden with others.  That was not easy to do, but I began to understand our baptismal covenant to "mourn with those that mourn".  I began to feel the heavy weight of the burden of cancer become a little lighter.  The love and support of others and there willingness to bear this burden with us made us stronger.  And of course immediately came the faith and prayers of everyone around us.  What a difference that has made.  Thank you for your prayers and know that Heavenly Father hears and answers them.  The ability to talk with our Heavenly Father and know that he hears us and answers us is one of the sweetest tender mercies we are given.

What I Hope for Most is HOPE!

Today is Kevin's one month anniversary!  Hurray!!  And he is doing everything he is supposed to be doing at this point in the process.  Actually, he is probably better than most.  His blood count numbers are continuing to come up and coming up faster than average.  This week was all about the neutrophils.  They just jumped off the chart.  He is in the completely normal range.  Neutrophils are our first line of defense against infection or bacteria, so having his neutrophils go up means that he is beginning to have an immune system.  Monday and Wednesday were lab work days and Friday was a visit with the doctor.  Wednesday and Thursday Kevin felt really good.  He worked for several hours each day and he started getting a little tired of the walls of our home.  So Kevin had it all planned out.  This was going to be his proposal to the doctor, "If my white blood count is up and my neutrophils are completely normal and rising, I have an immune system.  Does that mean that I still have to wear this mask every time I come to the hospital and could I maybe go out to a restaurant, or see people?"  Well this was going to be an interesting discussion topic.  The Bone Marrow Clinic has a team of 6 doctors and 6 Physician Assistants and we have seen all of them.  Friday we had a really nice Physician Assistant named Kelly.  Kelly explains things on our level so well and she is really easy to discuss things with, so Kevin picked a good day.  Kelly asks Kevin the 100 questions, that he answers every time we go, she looked at his lab work and the numbers were good and then Kevin pops the question.  Well, Kelly in a really nice way, reiterated he could hopefully do all those things after 100 days.  That wasn't really the answer Kevin was looking for.  Kelly then explained it this way.  Yes, you have an immune system, but it is a brand new immune system.  Your immune system is one month old.  It has not been exposed to any germs or bacteria and at this point would not be strong enough to take on that fight.  So we have to allow that immune system to get stronger before Kevin could possibly be exposed to anything.  That makes perfect sense, but not really what Kevin was looking for.  On Friday they did take an extra tube of blood and are performing the first test to determine how the donor cells are performing.  This test will give us a percentage of how many of the cells in Kevin are his old cells and how many are the new donor cells.  We are hoping for a 50/50 at this point in the transplant.  The results of that test won't be back for a week or so.  The good news of Friday was our visits to the hospital have been reduced to twice a week.  So that was reason to be happy.  What will we do with all our time?

On transplant day I started reading a book.  This book is about a man whose wife passed away and then he lost everything.  His business, his home and all his possessions.  He starts walking across the country and the story is of his journey.  Each chapter of the book has a thought.  The one I have liked most is this one, "What I hope for most is hope."  Throughout my life I have had many experiences with Faith and good examples around me of Charity.  I thought I knew what Hope was, but the past couple years have really taught me about Hope.  One of the hardest days since cancer diagnosis was the first time we met with the transplant team.  It was a year and a half ago.  We had this meeting simply to inform us of future possibilities.  We really didn't anticipate Kevin needing a transplant for several years.  The discussion with the transplant team was a couple hours long and we came to learn everything we wanted to know and even a lot of things we didn't really want to know about Kevin's disease.  This day was filled with odds and statistics and treatments and side affects and all the knowledge this team has learned over the many years of studies, to us they were pretty hard things.  To say we left feeling overwhelmed would be an understatement.  That meeting was followed-up with a 5 page letter explaining in detail all the things we had discussed.  We had the meeting, read the letter and then put it away.  We are grateful for the knowledge that science can provide for us, and we trust in the medical transplant team, but if that is all we had, we would feel sad, stressed, overwhelmed and discouraged.  Instead what we strive to focus on everyday is having a "perfect brightness of hope" that comes through our Savior, Jesus Christ.  I have learned to understand hope more than ever before.  Because of the atonement of Jesus Christ, he knows all, has felt all and understands perfectly.  We find hope in him and have hope in Heavenly Father's plan for Kevin.  This hope brings peace, comfort and understanding.  It does feel like perfect brightness, in what could be a dismal situation.  I came to find this hope every week in Primary.  We are taught to become like little children and I know why.  They have perfect faith and their eyes shine with hope.  Being in their midst has taught me hope.  Yesterday we were singing about faith, and I asked the Jr. Primary kids, why faith is like a little seed.  I then had 4 children give me a perfect explanation of what faith is, why we want it, what we have to do to get it and how it can grow.  Listening to them each week reminds me that the gospel of Jesus Christ is plain and simple.  Being in the presence of these perfect children each week brings me joy and reminds me to have hope.   Having a perfect brightness of hope is a tender mercy.

Miracle of Levaquin

Last week was a pretty crazy week.  Monday, Wednesday and Friday were regular hospital visits.  Thursday was Tiff's last day of school and I was able to go to her school for the dance festival.  She was in charge of teaching the 2nd grade dance and they were darling as you would expect.  Friday and Saturday Brandon had a basketball tournament in Payson so I left Tiff and Meg in charge of Kevin and watched Brandon play some basketball.  It has been a busy week, but a good week.  Kevin's response to how he is doing this week has been, "Things are going as scheduled."   We recognize this transplant as a process and the process is going well.  The lab work this week all had good results.  The red and white blood cell count is coming up.  His platelets remain good and Friday and today his neutrophils took a big jump.  Friday the count was 1,000 and today they were 2,500, which is actually in the normal range.  Kevin is impressing everyone with his lab work.  All of these numbers are an indication that the new stem cells are engrafting and the rise in the neutrophils means Kevin is starting to have an immune system which is great.  He is still having some slight side effects from the magnesium he takes and they may decide to give him that medicine through the central line every day instead of a pill, but we are going to wait until Wednesday and see how that is going.  On Friday they will take an extra tube of blood to run the first test to see how many of his cells are his and how many of his cells are the donor cells.  At this point we hope to have a 50-50% ratio.  It will take several days for the results of that test to come back, but we are hopeful for good results.  Kevin feels good.  He wishes he had more energy, but he has gone on a walk a few times this week.  We drive Kevin to a park away from our house, where we don't know anyone and he walks around the trail.  It isn't being outdoors that is a problem, it is people.  We are the one's that carry the germs and bacteria.  On Friday, when Tiff and Megan were in charge of  they called me to report that he had been fed and walked.  I had to ask them if they were talking about the dog or their dad.  They told me both. Kevin is doing well!

Today I think about where we were a year ago.  Last year on this date, we were in the emergency room.  In June of 2009 Kevin was receiving chemo but we were able to travel to Santiago, Chile to pick-up Tiff from her mission.  That trip was a miracle in itself that maybe I'll write about one day, but at the time Dr. Frame had us fill a prescription of Levaquin.  Levaquin is a heavy duty antibiotic for Kevin to take in case he came down with a fever which would be an indication of an infection.  We took the prescription with us to Santiago and then again last May when our family took a trip to Mexico.  Kevin never needed the prescription, but we kept it in the cupboard.  Last June, Kevin was to again have chemo in a few days and he wasn't feeling to well.  He thought, I'll just take this antibiotic and I'll feel better and stay on track with the chemo.  He took one pill that night before he went to bed.  The next he came home from work and I asked him about a rash on his arms.  He hadn't even noticed it, but he told me about taking that medicine.  He then said that his throat was a little sore and scratchy.  I knew that strep throat was going around and I told him we needed to go to instacare to get a strep test.  We did and it wasn't strep.  The doctor thought it might be a reaction to the Levaquin, but was surprised that one pill would do that.  The next morning he woke up and his entire body was covered with the rash and his fever was up to 101.  We called the oncologist and he told us if the fever got to 103, we needed to go the emergency room.  That evening the fever was at 104, the rash was all over, his throat was sore and we were at the emergency room.  They dripped benadryl and fluids and still couldn't believe that one pill could cause such a severe reaction.  They kept him a few hours and sent him home.  Over the course of the next couple of weeks, Kevin's entire body reacted to this drug.  He ran a high fever, he had sores in his mouth, his hands and feet were so swollen he couldn't wear shoes, his skin peeled off all over his body; it was as if that one pill had burned his entire body from the inside out.  Dr. Frame, Kevin's oncologist couldn't believe it.  He said he has never seen that drug cause such a reaction and to think he only took one pill.  Of course I spent those couple of weeks asking Kevin, why did you randomly take that pill.  Kevin really didn't have a good answer.  We thought the miracle of this experience was that Kevin didn't take that pill while we were out of the country.  We just kept asking ourselves what if he had taken it in Santiago, what would we have done.  They would have never been able to figure out what was going on.  That was a blessing, but the real miracle was realized just before transplant.  In our preparation for the transplant, we met with the pharmacist at LDS hospital.  She brought in a complete list of medications that Kevin would be required to take and to review the side affects and the purpose of each of them.  On the list was Levaquin.  We immediately explained that Kevin had a horrible allergic reaction to Levaquin.  She was surprised when we told her what happened with one pill.  I sat there and thought.  This is a miracle.  What if we didn't know that Kevin was allergic to Levaquin.  He would have started taking this antibiotic the day of the transplant with about 7 other drugs.  I can't even imagine what Kevin would have gone through as the medical team tried to figure out what was causing this horrible reaction and even what drug it could have been.  Now we know.  Now we know why Kevin took that pill on that day.  This was such a blessing.  As I thought about this miracle, I also came to recognize that Heavenly Father knew a year ago that Kevin would need this transplant.  Kevin has inquired of the Lord about every step of his cancer battle.  He doesn't make any decisions or have any treatments without asking the Lord if it s right.  Kevin has come to know he needed this transplant and the Levaquin miracle was another answer that the Lord knew Kevin would need this transplant and he was watching over Kevin and preparing all things.  Miracles are tender mercies that help us to be mindful of the love that Heavenly Father has for us his children. We know he is aware of Kevin and is watching over him.    

I Believe There Are Angels Amongst Us

The best part of this week was Wednesday and Thursday when we finally got a break from going to the hospital.  The visit to the hospital had become way too familiar.  But as I say that, I have to acknowledge the good people on the 8th floor at LDS Hospital.  We are getting to know them well and they couldn't be nicer to us.  They see patients like us everyday all day and they are constantly encouraging us and looking for the good, little things that are happening.  We certainly couldn't do this without them.  Kevin has been pretty constant all week.  He's eating everything I fix him, and that's good since that's all he can have.  He eats because he has to, not because he is hungry.  His appetite is still pretty small.  I would call this week steady.  No extreme ups and downs, which I appreciate.  I believe the effects of the chemo and radiation are finally about out of his system, but they did manage to take all the energy from Kevin.  Last week the Physician Assistant said that if Kevin felt like it he could go outside for a walk.  It's not the outdoors that is a problem, it is people.  So Wednesday, I told Kevin we could drive someplace where there are no people who would want to talk to him and go for a little walk.  He suggested that he had already gone for a walk, he explained from the bedroom upstairs to the dining room down the stairs.  And that was about what he had the energy to do.  Getting strength and energy back will be a wait.  Kevin has started to have some minor headaches this week, which are a side affect from the Tacro medicine he takes.  He can't take any Tylenol or Advil or anything like that for his headache because those drugs would mask a fever, which is the first symptom we watch for Graft vs. Host disease, so that it makes it hard.  He is finding he has to eat and rest at the right times to avoid the headaches and we are still trying to get the right Tacro level.  On Friday we went back to the hospital for lab work.  When the nurse pulled up his results he said, "WOW, look at those platelets, they have sky rocketed."  My goal when this is over is for someone to award me some type of medical degree, so I will explain what that meant.  It simply amazes me all the things that can be determined by a blood test.  The medical team can determine almost exactly what is happening by those blood counts.  All of Kevin's counts are low right now.  That's what happens when they give you chemo and radiation.  He had to go low in order to accept the donor cells.  The purpose of the lab work 3 times a week is to make sure he doesn't go to low, which would then require a transfusion.  Platelets cause our blood to clot, so without platelets, we would all bleed to death.  Not good!  Kevin's platelet count had been as low as 55, on Friday his platelet count was 143.  Let's hear it for Kevin's platelets.  Most of our platelets probably run around 300 to 400, so he has a ways to go, but that was quite an improvement.  That increase could possibly suggest that the donor cells have begun to en graft, which is the best news of the day.  Kevin's neutrophils have also increased significantly.  Neutrophils are our first line of defense against bacteria and infection.  As the neutrophils go higher, Kevin's ability to fight bacteria and infection will increase.  Good news Friday!  Many have asked if Kevin is going crazy yet.  Not yet.  He does a couple of hours of work everyday on the computer and phone and he has a good book that he is in the middle of and both of those things fill his day.  I think he's not crazy yet, because he doesn't have the energy yet to do much more than that.  His attitude is great and he finds something to laugh at and harass me about every day.  The kids are doing there job of cracking the jokes and making him laugh. 

One of the greatest tender mercies in the past two years has been seeing the power of the priesthood.  Our family has come to have great faith in the knowledge of the Plan of Salvation.  This has to be one of Kevin's favorite lessons to teach.  Several times he has got out his old missionary binder with his favorite chart in it and bore testimony of the Plan of Salvation.  What a blessing it is to understand that Heavenly Father has a plan for all his children.  We know that Heavenly Father has a specific plan for Kevin.  We know Heavenly Father's plan for Kevin will be manifest through the priesthood.  The priesthood is "the power to act in God's name".  Every time Kevin has received a priesthood blessing, Heavenly Father has manifest his love and his blessings to Kevin.  A week before the transplant Kevin received a blessing from our stake president, President Dahl.  Kevin received a blessing from his dad with  his other family members joining in the circle.  When Kevin was in the hospital,  Bishop Lloyd came to visit and gave Kevin a blessing.  Each blessing brought comfort and peace.  A few days after those blessings, Kevin received a card from a former co-worker which said, "I have no doubt that you have angels surrounding you."  Reading those words brought to my mind the blessings he had received and reminded me that he was blessed to have angels attend him.  She went on to say that "those angels are usually our ancestors and relatives who know us well."  This weekend as we remember those loved ones who have gone on before us, I am comforted to know that angels do administer to Kevin and to all of us.  I think of my grandparents and Grandma Freeman and know that they are with us or are sending the best angels to comfort Kevin at this time.  That is a tender mercy.  Kevin and his sister Becky, who has also endured cancer, share something special that was promised to each of them in their Patriarchal Blessings, and they recognize that it is through the power of the priesthood that those blessings will be fulfilled.  The power of the priesthood and the knowledge we have of Heavenly Father's plan of salvation, his plan of happiness, are tender mercies. 

The Aliens Have Landed

Sunday was a pretty uneventful day, which at this time I like uneventful.  Considering what the Sunday before brought, we are happy to start this week off with no news to report.  Kevin is doing well.  He is eating and taking his medication on schedule, and those are my duties and he is complying well.  He still finds himself being more tired than he wished and still some nausea, but considering what his body has gone through and all the medicine he puts in it everyday, I think he is handling it all real well.  Monday we went to the hospital for blood work and his numbers were good, so we were told to go home, which we like to hear.  Good numbers means that none of his counts are low enough to require a transfusion, which is pretty common for Kevin's condition.  Tuesday we went back to the hospital to see the doctors.  Wow, did that ever turn into a long day.  Kevin and I both agreed that all we would say was, we are learning many things, and patience is one of them.  When a doctor visit becomes a 4 and 1/2 hour ordeal, patience is taught and we just had to find something to laugh at.  The good news of the day was that Kevin's platelet count has increased significantly.  Platelets are our first line of defense for our immune system.  Increased platelet count, could mean that the donor cells are grafting and that was good to hear.  We still try to balance the meds and the effects that they are having, so we will continue our three day a week visits to accomplish that.  Today we learned of the details of graft vs. host disease and the signs to watch for.  That is the next round of the process.  Watching for this common problem.

Yesterday, Kevin said to me, "if you don't have anything to talk about, tell them about my central line."  So this is Kevin's story, so I'll tell you.  We started this transplant process two weeks ago with the central line placement.  This is a small surgical procedure in which they cut into his jugular vein and insert three tubes in the right side of his chest.  Kevin went into this procedure thinking he would have a little tube sticking out of his chest.  Well he was a little surprised to see these three, 4 inch tubes hanging from his chest.  He expressed his concern to the nurse of what is this thing and she had the perfect explanation.  She said, "we often refer to it as an alien trying to escape from your chest."  So we call this thing the alien.  The central line serves an important purpose and saves the veins in his arms from being tortured several times a week to draw blood. And it works great, when you take it straight from the jugular, there is no problem drawing it real fast, 3 tubes in about 15 seconds.  He can also receive medication when necessary and transfusions if they are needed.  Kevin and the alien will have plenty of time to bond, since he will have it for maybe 6 months.  You will each have to decide what your personal relationship is with Kevin and if you dare ask to see the ALIEN!

Many friends continue to ask what they can do for Kevin.  Phone calls, emails, cards, visits, meals, etc.  Let me just explain the situation.  You are always welcome to call.  If I'm not at the hospital, I am usually home and more than happy to talk to you if you call the house.  Many of you call Kevin's cell phone.  If he is feeling good and feels like talking, he will answer it.  We always listen to the messages and appreciate your words of support.  What we don't do very well is return phone calls.  That doesn't mean you shouldn't try to call us again, it just means some days there are more calls than there is time to talk.  Kevin appreciates the uplifting emails and cards he receives.  Visits, just aren't possible right now.  Kevin sees the house and the hospital.  And anyplace with people is pretty much off limits, due to his compromised immune system.  Food, Kevin would love food delivery, but that is just not possible.  Kevin and I met with a dietitian at the start of this process and I have a pretty long list of guidelines, what he can and can't eat and how it needs to be prepared.  Basically, what Kevin gets to eat is whatever I prepare for him.  Sad but true.  Again, thank you for your thoughts and prayers and that is what matters the most.

Be The Match!

Friday we went to the hospital for a check-up.  This will be a regular event, three days a week in fact, so I will tell you a little bit about what happens.  As soon as we arrive, they take blood, always three tubes sometimes more.  Since Kevin has a central line, that means they don't have to find a vein, they just hook him up and take what they need.  We then go to an exam room and wait.  Wait for the results from the lab on the blood work.  The 40 or so pills a day that Kevin takes, are for many purposes.  Several antibiotics, to keep Kevin protected from any bacteria or virus.  Two of the medications are needed to keep him from rejecting the donor stem cells.  They keep Kevin's immune system low so that his cells won't want to fight the donor cells.  It is important that this drug remain at a perfect level at all times, therefore they have to check it 3 times a week and then the number of pills are adjusted accordingly.  Other drugs are to protect his organs.  The rejection medicine makes his magnesium level low, and low magnesium means trouble for the kidneys.  So he has to take magnesium.  You can see that this entire process is a balancing act.  Enough medicine to ensure that the stem cells graft, but not too much and medicine to protect what the other medicines cause.  This is a science and every step of this process has been studied.  When the lab work comes back, we meet with a Physician Assistant who goes over the results and examines Kevin.  If even the smallest concern arises, then we see the transplant doctors who is in that day.  Friday, results were pretty good.  Kevin's magnesium was low and they suggested he might need to have someone come to the home and give him magnesium through his line.  Kevin said he was willing to increase the number of pills he takes and try that.  The hospital called this morning and increased his tacrolimus dose, so we are beginning to understand this ever-changing process.  
Kevin feels pretty good today.  He still feels a little nauseated throughout the day, particularly when he takes his medications. He doesn't feel like eating much, but knows he has to take the pills, so he tries to make that all work.  He has felt a little exhausted, so he just had to rest, which was kind of hard for him.  The kids and I were working in the yard and Kevin had a hard time sitting by and watching.  This won't be an easy part of the process for Kevin.  We had to tell him several times, he couldn't play in the dirt or touch the plants he could only supervise.  We're starting to figure out the do's and don'ts of keeping Kevin healthy.  

Everyday for the past 8 days I think about the donor.  We have been told that day 8 usually the donor's stem cells begin to graft and produce new healthy cells.  It is just amazing to me when I think about new healthy cells being produced every day.  I wanted to share a little bit more about the process of being a donor.  There is a National Bone Marrow Donor Registry.  This is where we turned, when Kevin's siblings weren't a match.  To be placed on the donor registry, an individual only needs to have a cheek swab.  A cheek swab will provide 6 of the 10 indicators of a match.  When someone needs a donor they find someone with 6 out of 6 on the list and request that they give blood.  With the blood sample they are able to test the other 4 indicators.  And when they have found 10 out of 10, they have a match.  Once they find the match, then they explain the donation process to the donor and have them sign that they are willing to be a donor.  The donor then receives a physical exam to ensure he is healthy enough to donate.  Kevin's donor was a 19 or 20 year old young man.  That's all we know.  We don't know how long he has been on the list, or why he chose to be a donor.  I wonder about all those things.  Our transplant coordinator then worked with the national registry to request a transplant date.  This would be according to the donor's schedule.  Everything the donor is required to do all happens wherever the donor lives.  The transplant was on a Friday.  Monday and Tuesday that week the donor received a neupogen shot which stimulates the stem cells to leave the bone marrow and go into the bloodstream.  On Wednesday and Thursday, the donor would go in and have an IV in each arm.  One side they take the blood out, the blood goes through a machine and it separates the stem cells from the blood, and then the blood goes back into the donor in the other arm.  This is called a peripheral donation.  Thursday after the donor donated, the stem cells were flown to SLC for Kevin's transplant on Friday.  The donor incurs no medical expenses, those are paid by our health insurance.  The donor does give of his time to make those many trips to the hospital.  Why do I tell you all this?  Our family feels the need to give back. When our schedule at home settles down a little bit, Brandon is considering organizing a donor drive for his Eagle Scout project.  We hope many will consider being a donor. You could "BE THE MATCH" that someone like our family needs.   We thank you for your prayers for Kevin and I would ask that you also remember the donor in your prayers, he gave a lot and we pray that his life will be blessed for what he so willingly gave to us. 

Grateful for Kevin's Job

This morning Megan came down the stairs and said, "What is going on down here, what is wrong and why is he so loud."  I said well he's on a conference call for work.  Megan said "I thought he was sick."  Well obviously he's feeling better.  I'm sure there are plenty of you who wish you could enjoy a quiet day at home, but the past couple of years have taught us to be really grateful for Kevin's job.  Kevin is the provider for our family and when he was diagnosed it caused him great concern.  He worried about what cancer would mean for his family.  When he started chemo, Kevin would take the day off for chemo and then go back to work the next day.  He couldn't get sick, because he was going to work.  When chemo went to three days in a row, he would go to work for a half day and then stop by the chemo room.  Being able to go to work every day was a blessing and something Kevin has always been grateful for. 

Today I want to express gratitude to Kevin's company and his co-workers.  You are great.  The management of AgReserves, Inc. could not have been more supportive of Kevin's condition.  There concern has always been for Kevin to do whatever he needed to do to get well.  The feeling of security that we feel about Kevin's job is such a blessing in our lives.  There are many things we need to worry about, but not having to worry about Kevin's employment brings great peace to our family.  Please know you have made, and will continue to make, Kevin's journey to heal easier because of your support.  While Kevin is away from work, I know there are many people helping Kevin with his job and stepping-in to take on extra responsibilities.  Thank you all.  Thank you to the employees at headquarters and employees from so many farms and ranches who have offered well wishes.  We are overwhelmed by your kindnesses.  A man's ability to provide for his family is such an important part of who he is and to all of you who are helping Kevin to continue to fulfill his job responsibilities you are a blessing to us.  Kevin wants to continue to work at home when he feels able to do so, and I encourage that because otherwise he just gets in my way.  So thank you for allowing him to do so.  So don't be surprised when he calls you on the phone or sends you an email.  That's a good sign, because it means he feels good.  And when he's working he seems to feel the best.  To have a good job and to be surrounded by supportive co-workers is a tender mercy.

He's Home!

Yes, we are home.  Kevin is in his own snuggy bed, but the nurse isn't quite as nice as the ones at the hospital.  He better say that the food is better, or he might be looking for a different place to hang out for the next 95 days.  He impressed the doctor with his calorie intake yesterday and he managed to take all his pills and keep them down, so out the door he went.  As he said good-bye to his day nurse she said, "it's been a pleasure taking care of you, but I hope we don't see you back as a patient."  That was the nicest thing anyone could have said to us. 

Yesterday, during a reflective moment, Kevin said to me, "we need to make a list of everyone we need to send thank you notes to."  I told him I can take care of you for 100 days but I can't possibly send thank you cards to everyone we need to thank, that job is just too big.  I have come to recognize that no one makes this journey on their own.  It would be impossible.  One of Kevin's favorite stories is "Footprints in the Sand".  I'm sure you all know it.  The individual is pondering on life and sees two sets of footprints in the sand, but recognizes that during the hardest times of life there is was only one set of footprints.  The individual asks, why did you leave me.  I did not leave you that is when I carried you.  We are truly being carried and it is the support of family, friends, Kevin's co-workers, neighbors and our ward and stake family that carry us.  The Savior teaches us that he will not leave us alone and comfortless, and he has sent you to be there for us.  So please allow me in this not-so-personal way to express our gratitude to so many.  Please know that every card, every phone call, kind acts, emails of well wishes, good thoughts and most of all your faith and prayers are so appreciated.  I wish I could find the right words to express to you what a difference it makes to us.  I have had many express to me, "I don't know how you do it?"  Honestly, I don't know how either.  There is a strength and ability given, that comes from sources that only our Heavenly Father knows.  And you are that source. Thank you for allowing the tender mercies of the Lord to be made known to us through you.

"I'm Singing in the Rain"

Last night when I left Kevin I asked him, "why don't you think about shaving and taking a shower tomorrow." He said he would think about it, which was actually really encouraging.  So I arrived this morning, he had eaten half of his breakfast and had told the nurse he wanted a shower.  He asked the nurse what she thought of his "rough and tough western guy look".  She told him she prefers clean shaven.  I had someone on my side.  So he shaved and then drug his stand with his three drips to the shower.  He told me "if you hear a loud thud, come running", so I was listening intently.  And then it started, "I'm singing in the rain, just singing in the rain, what a glorious feeling I'm happy again."  What a great sound that was.  Kevin has turned the corner.  He feels a little better and he has continued to progress throughout the day.  He ate half of his lunch.  The goal for today is to start taking the medications he needs by mouth rather than receiving them in his central line.  In order to go home he has to be able to take the 40 daily pills by mouth and keep them down.  He is making good progress and I am happy to be the recipient of his sarcastic humor. 

The 8th floor of the hospital is the Bone Marrow transplant floor.  There are different types of transplants and they refer to the type of transplant that Kevin received as a "mini" transplant.  Even though the doctors are prompt to tell us there is nothing "mini" about it. "Mini" refers to the fact that they don't totally kill his immune system before the transplant.  They bring his immune real low, but don't totally eradicate it.  The "mini" also is done mainly out-patient and, barring any future complications, Kevin will be allowed to spend the majority of his recovery time at home.  The patients on the floor are the patients that receive the full transplant and require hospitalization for weeks or months.  Every couple hours I leave this lovely room we are in and go for a walk.  Every time I walk I pass the patients on the floor that leave their room several times a day to walk the small loop around the desk.  Our three days at the hospital have made me grateful.  Grateful that soon Kevin and I will be home enjoying the comforts of our own home and our family.  If I hadn't spent this short time in the hospital, maybe I wouldn't be so grateful for this tender mercy.

Our Kids Are Better than Your Kids

Well maybe just for today! Today if there was a perfect kids contest I would enter ours because they are simply the best.  I would probably use their pictures from when they were little because they were really cute then, but maturity, independence and life experiences hasn't treated them too badly. 

Kevin is still sick.  What else can I say.  Today I realize that he is just going to need some TIME.  And it just so happens that we don't have anything planned for the next three months, so we do have time.  This go around has been a little rougher and adding to the fact that he has all kinds of new medications in his system, he just can't get stabilized.  He ate about 5 bites of lunch, the first food he's had for a couple of days and, fingers crossed, it's still down.  The team up here on the 8th floor of LDS Hospital are doing everything they can to get him back to good health.  If I were to ask Kevin he would probably say, "This is boring!"  Last night he pushed the nurses call button and the gal at the desk asked him what she could do for him and he said, "I was just lonely and needed someone to talk too."  I'm not sure what that says about my conversation skills, but it says that Kevin's hangin' in there, and still has a sense of humor and we all appreciate that.

So now about those perfect kids we have.  Yesterday Kevin and I left for the hospital and the kids went into action.  The "firework" incident, as Tiff calls it, required a complete two room cleaning job and some laundry and I just walked out and left it for them.  They scoured the bedroom and bathroom, did the laundry, went to church, packed Kevin and overnight bag, packed me a lunch, and headed to the hospital to do what they do best, lift Kevin's spirits.  Then after the visit went home and made cookies, which I hope Kevin will soon be able to eat. Seeing our kids in action yesterday reminded me of something I have thought about before.  This challenge has come to our family at a time when we have every ability to overcome it.  Our kids are all right where they need to be.  Tiff has learned to deal with 27 eight year olds, she can certainly take care of Brandon and she does his Spanish homework for him.  Meg, the best cleaning lady is home from school to make certain that not one germ gets in our house and Brandon; what perfect timing you have to get your drivers license and be so independent, who needs their mom anymore.  And me, well what else do I have to do.  I recognize many people have life's greatest challenges at the most inconvenient time, when they have to wonder how they can keep their family functioning,  but I see one of the tender mercies of the Lord, in preparing us and allowing us to have our lives in order to accept and overcome this challenge, for that I am grateful.

Tiffany, Megan and Brandon you are and will always be our greatest joy.  You are everything we would want you to be and more.  The hardest day of your dad's life was the day he had to wonder if he would be there to see many important future days in your lives and that day he committed to do whatever he had to do and go through whatever he had to go through because he will be there.  You are the reason your dad has every bit of determination to fight this battle and he will win.  He fights for you and because of you and with you.  Never forget families are forever!

There will be ups and downs on this journey!

Long before any patient reaches the point of having a transplant there are many consultations with  doctors, nurses, coordinators, specialists etc. and etc.  Every consultation with a doctor includes a detailed explanation of what this process entails and includes the words there will be ups and there will be downs.  Late Saturday afternoon Kevin said to me, "I will make it through this."  He wasn't feeling one bit better.  We put our hopes into Sunday morning.  This morning at 7:00 Kevin said I feel a little better and I know I need to eat something today.  So we started with some anti-nausea medication, gave that 30 minutes, then went to chicken broth and so far so good.  I left for church and left Tiff in charge of making sure all 15 pills got in Kevin and I warned him that if he threw up the pills he would be going to the hospital.  She was up for the job!  About 10 minutes into church, my phone vibrates and Megan has sent me a message that he threw them all up and it was bad.  When I arrive home he is not happy.  I told him I was calling the Bone Marrow Clinic and he said "no" just get me some meds and we'll be ok.  The longer I thought about it, that didn't work for me.  So I told him I was overruling him and I called the hospital.  Rachael was on staff and she was well of aware of Kevin's condition because she was the nurse that gave him the stem cells on Friday.  I explained the situation and she expressed her concerns to me and said we needed to come into the hospital.  I told her she needed to be the one to explain that to Kevin and in such a nice way she convinced him.  At the hospital they gave him fluids and took blood to check all his medicine levels.   This battle going on inside Kevin between his cells and the new donor cells requires a perfect balance of the medication needed to assure that Kevin accepts the new stem cells.  The transplant team consists of 6 doctors and one of them are on the 8th floor of the hospital at all times.  Dr. Hoda explained to Kevin that it's really important at this critical stage that they get him feeling better and stronger and in a condition that he can take the needed medications.  So he admitted him to the hospital for a couple of days to do just that.  For me this is a good thing.  Kevin couldn't continue to fight that sick battle on his own.  At the hospital all the meds are given through his central line, along with fluids and anti-nausea medicine and everything he needs to get over the effects of that horrible chemo drug.  So I write from the hospital where Kevin is resting so comfortably.  It is good to see him resting and where they can help him better than I can.  He didn't want to come, but he sure has slept well since being here and that's a good sign for me. 

On a lighter note Tiff wants to add the Katy Perry song "Firework" to this posting of the blog because she said that explains perfectly what happened with those 15 pills she worked so hard to get in him and she has permanently resigned as the step-in at-home nurse, so Megan watch out you are next in line. 

A NEW LIFE - Day 1

Happy Birthday Kevin!  Those were the words yesterday of our transplant coordinator.  She had previously told us that transplant patients celebrate two birthday's; original birth and their new birth.  Our family will now celebrate May 13th as Kevin's new life day and we will think most about the young man who on this day gave Kevin the gift of life.  In medical terms transplant day is day 0 and today, Saturday is day 1.  So today I start this blog for family, friends, Kevin's co-workers, neighbors and all who love Kevin.

So transplant day and day 1 for me are really good days.  I have a wonderful, peaceful feeling and my heart is so full of gratitude for our donor.  I will probably say "our" and "us" a lot even though it is Kevin going through this process, but what the donor gave was far more than just a gift to Kevin, it was a gift to our entire family. 

But, what you all really want to know is how is Kevin doing.  Kevin is sick, really sick.  Not because of the transplant but because of the three days of chemo that was given to him on Monday, Tuesday and Wednesday.  Flubardine is the chemo drug that Kevin never hopes to ever see another day of his life.  He had this drug during his last chemo regimen and it makes him horribly sick.  Kevin and I were really concerned about him receiving this drug for 3 days and then knowing that the pattern would be that on Friday, radiation and transplant day, he would be so sick he wouldn't be able to get out of bed.  The doctor told us he would construct a "cocktail" of anti-nausea drugs to prevent this horrible sickness.  We were hopeful, but I know Kevin was hesitant to think he could be so lucky, and he wasn't.  Friday morning Kevin got up and he was sick.  He tried real hard to think he was going to be fine, but all the positive thinking in the world, wouldn't make it go away.  We drove to the hospital with bowl in hand and arrived at 12:30.  Kevin's first question of the nurse attending him was, "Are my stem cells here?  because if their not here, I'm not having radiation."  The nurse replied, "Of course your stem cells are in the city."  Recognizing he was sick, he started off with a drip of anti-nausea medicine and then we went down to radiation for his full body imaging which was to take 30 minutes.  Kevin had on his good face, you have all seen it, and they began radiation.  Kevin has to stand the entire time radiation is given and on minute 27 Kevin indicated that he wasn't doing well.  They stopped radiation, found his blood pressure had sky rocketed and his heart rate dropped significantly.  They immediately put him into a bed to rest.  Which he did for about 30 minutes and then back to finish the last 3 minutes or radiation.  The transplant team upstairs was notified of the delay and Kevin's status and the team notified the Red Cross to hold off on delivering the stem cells until 4:00 p.m.  He was wheel-chaired upstairs where they immediately gave him 2 bags of fluids and time to rest, which he did.  He was horribly sick and trying real hard to simply hang in there while being rather anxious about being well enough to receive the cells.  At this point I don't think there would be any condition that would stop this team from administering the stem cells, they were too hard to get.  In a couple of days when the horrible affects of chemo are gone, I look forward to sharing with Kevin the significance of this day.  He was simply to sick to feel the emotion that I felt.  His emotions could only be about being strong enough to do what he had to do.

Kevin and I sat in a dark room for about 30 minutes and he rested.  At 3:55 p.m. the door opened and in walked a woman wheeling a large box, marked "American Red Cross --  Live Blood Cells".  I watched with great anxiousness to see those stem cells.  She began to unpack the box which was carefully packaged and lifted off a large Styrofoam piece that secured the valued cells, she then removed a large bag which I first wondered if it were the cells, it was only the ice pack that they had been packed with, and finally she brought out a small bag, that looked liked every other bag he has had dripped into him over the past 2 years, only this bag was smaller than anything he had ever received.  It was only filled half full, but inside was filled with rich, red colored cells that looked to me pretty much like blood.  It was a very emotional moment for me, one that I maybe had not expected, but I knew that that bag contained Kevin's new life and recognizing that it had come from a complete stranger that has never met us or doesn't know anything about our family my heart was so full of gratitude.  The science of medicine is remarkable.  Kevin's nurse and the Red Cross employee then checked, double checked and triple checked ID numbers and completed several forms to be certain that these stem cells were going to the right recipient.  At 4:05 p.m. the nurse hooked up the bag to Kevin's central line and it began to drip.  The nurse said, "Kevin this is it, these are your new stem cells."  At that very moment across the hospital intercom the music began to play, it was the music that plays to announce the birth of a new baby.  WOW!  I thought, there is New Life all around me at this very moment.  At 4:30 it was completed.   He had the cells.  This miraculous thing we call our bodies just knows what to do.  Those stem cells know where to go, they flow through the blood and find their way into the bone marrow where they will begin their battle.  The battle between Kevin's current cells and the new cells that we want to take over and become Kevin.  Each of our bodies are unique and don't want to accept anything foreign, but all the medications Kevin is taking is to confuse both his current immune system and the immune system of the donor and allow them to live together until the donor's immune system can take over and Kevin will have the immune system of the donor, one that is free of cancer.  It goes without saying that it was a very spiritual moment for me, one that so many faithful people had prayed and fasted for and so much faith exercised in Kevin's behalf.  It had happened.  Another miracle!

Kevin was still sick.  He rested for another 30 minutes, being watched to ensure that he didn't have any type of reaction to the stem cells.  His vitals were all good and we were able to go home.   Kevin's night at home was pretty long and this morning we made the trip back to the hospital to have his blood checked to make sure the levels of the immunosuppressant  drugs are what they should be.  He managed to get the 15 pills down that he takes each morning at 9:00 a.m. and we just hope they stay right where they are supposed to, and he is resting.  For Kevin, he might call tomorrow his "New Life" day because this ugly pattern of chemo sickness will be so much better by then and he will begin to feel what this transplant means for him. 

So that is Day 0 and Day 1 and they are good days!  Days filled with gratitude for so many "tender mercies" from the Lord that have allowed us to be where we are.  I call this blog "tender mercies" because that is what this 2 year journey has been for me and I know will continue to be.  In April 2005 Elder Bednar said, "I know that He lives and that His tender mercies are available to all of us.  Each of us can have eyes to see clearly and ears to hear distinctly the tender mercies of the Lord as they strengthen and assist us in these latter days.  May our hearts aways be filled with gratitude for His abundant and tender mercies."    I write for 3 reasons.  First, so those who love Kevin most can keep updated on his journey.  Second for myself.  I want to always be grateful and I want to always remember the tender mercies of the Lord so abundantly given to our family.  And third I write for my children and my children's children.  In October 2007 President Eyring told us to" Remember, Remember".  He explained why he wrote and it was because of an experience that he had where he heard these words in his mind, "I'm not giving you these experiences for yourself.  Write them down."  President Eyring reminds us that "forgetting God has been a persistent problem among His children" and "the challenge to remember has always been hardest for those who are blessed abundantly."  Our family has been abundantly blessed by so many around us and I don't want to ever forget nor do I want my posterity to ever forget.  And so I write. 

Letter to the Donor! Pre-transplant

Dear Mr. Donor:

I don't know your name. I don't know where in this big world you are or what you are doing. Today I wish I knew how to contact you and tell you a million thing but because I can't I want to tell my Dad's story. I only wish that this could thank you in some small way for what your about to do for my Dad.

My Dad has been battling non-hodgkins lymphoma cancer for a while now. When the cancer was found the prognosis was pretty rough. The cancer was through my Dad's entire body. They began aggressive chemotherapy treatments which worked well. My Dad is young and has a lot of life to live. After one of his treatments when people would ask him how he was he would often say, "fair to middlin" or "just happy to be alive". I have never heard my Dad say that he was sick or complain. He is a very patient man and endures well. Just a few short months after his treatments were over with his cancer came back and he then became a candidate for a bone marrow transplant.

The second round of chemotherapy was a little harder on him. He had some severe reactions to some of the drugs he was taking and the higher doses of chemotherapy made him even sicker but my Dad never complained. Even to his own family when they would call or inquire... he would say, "I'm just peachy keen!" We knew for a while that my Dad was going to need a transplant but how soon we weren't aware.

The time finally came and my Dad elected to have a life saving and cancer ending transplant. This alternative will be a CURE for the cancer and the only way for my Dad to be cancer free. All of my Dad's eligible siblings were tested and it was a very sad day when, one by one, their tests came back negative. The doctors told us that we would have to look to the national bone marrow donor list to find a match because at this point it was going to be like finding a "needle in a haystack."

This is the part when I began to wonder just what it was that Heavenly Father wanted my family to learn from this never ending trail we are going through. I remember the day that I found out my Dad was sick. I was living in Chile at the time serving a mission for the Church of Jesus Christ of Latter Day Saints. My family called me up and my Dad told me over the phone. I was devastated and my heart ached for the pain and suffering that my family was going through. Right then, for some reason, I had felt that my Dad would be ok. When we reached this point in his treatment... I began to doubt that initial feeling I had. It seemed impossible now that this was ever going to end.

I remember asking my Mom every couple of days if we had heard anything more about a donor or about a transplant. Every day she would tell me no... we are still waiting. Until finally one day I came home from school and my mom said dad had some news. It was his birthday and we sat down at the dining room table to eat cake and my dad told us he needed to read us an email. His nurse from the bone marrow transplant team had sent him something earlier that morning. He began to read the email... "Kevin: we are happy to inform you that a match has been found and the donor has agreed to take part in the procedure." My eyes filled with tears and the wait was over. Happy birthday to Kevey Love!!!

So it began. My Dad started the process of meeting with nutritionists, psychologists, and other specialists on the transplant team to get him ready for this life changing event. He has been traveling and and tying up lose ends at work in preparation for the time off he will need to heal. Most importantly he just keeps being our Dad. We keep living. He goes to the Sports Mall with us and tries to play racket ball. He wouldn't miss one of Brandon's basketball games. He hasn't missed a meeting for his church calling and hasn't missed a Sunday at church. Today we did yard work together for Mother's Day. We went to dinner... we just were a regular family. Like nothing is wrong and that's how it should be. I consider every single day I have with my Dad another blessing from my Heavenly Father. You don't realize just how fragile life is... at least I didn't until I was forced, one day while I was Chile thousands of miles away from my family, to think about what it would be like if my Dad was gone. We have tried as a family to keep living our lives and live them like every day matters just a little bit more.

So... here we are. This Friday is the day.... the day we anticipate and celebrate. Friday is a day we have waited for for a long time. It is a day we will remember for a long time. The day that someone who we don't even know will decide to give the greatest gift he will ever give to another human being. The gift of a second chance at life. Mr. Donor, we know one thing about you. We know that you are a 19 or 20 year old male. And we know (from my mom's deductive reasoning) that you probably live somewhere on the east cost. The Pasker family would just like to tell you that on Friday you are making it possible to save the life of a father, a husband, a son, a brother, an uncle and a good man. On behalf of my family and surly from my father, we are eturnaly grateful that somewhere during your walk of life you accepted to be a bone marrow donor and that by doing this you have impacted the lives of one family in Sandy, Utah forever.

Our warmest regards,

The Pasker Family