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.