H. Evan Gardiner (1968 - 2010)

Funeral Services for H. Evan Gardiner

2010-02-09T22:43:00.008-07:00

As you know, Funeral Services for Evan were held on Thursday, January 21, 2010.

Since there were many of our friends and family members who were unable to attend, and because so many of those who did attend have asked for copies of the talks that were given, I decided to post the text of each of the talks here. They appear below in the following order.

Tribute to Evan - Written by Margot Gardiner

Life Sketch - Given by Joy Germann

Tribute to Evan - Given by Monte Gardiner

Closing Remarks - Given by Bishop James Pack

Tribute to Evan - Written by Margot Gardiner, Given by S. Kent Madsen

2010-02-09T15:45:00.004-07:00

Dear Friends and Family,

I desperately wanted to pay tribute to Evan myself today, but I knew I wouldn’t be able to get through it in any coherent fashion, so I’ve asked my Dad to read it for me.

Before I start, I wanted to take just a moment and thank you all so much for coming. I have been so touched by how many of you came today, and the distance that many of you traveled to be here.

Our journey has, without question, been the hardest experience we’ve ever been through, but it has also been the most sacred experience we’ve ever had. And that is because of the outpouring of love and concern that we have received from you - the countless prayers you have offered on our behalf, and the many acts of kindness and generosity that you have extended to us over the last several years.

Evan and I, and our children, have never felt so loved. The Lord has watched over and protected us, and taken care of our every need, through you. Our friends have become our family, and our family relationships have grown stronger. There simply aren’t words to express what a blessing that has been to us. From the bottom of my heart, I thank you.

Now let me tell you about Evan.

I met Evan in August of 1990 when we both started working as Resident Assistants in the dorms at BYU. All the new R.A.’s had to attend a week-long training program before the school year started and there was a group of us that hit it off right away and became fast friends. We ate meals together every day, and did fun stuff together as a group on the weekends. Evan was part of that group, and he caught my eye right away. When school started, Evan and I discovered we had a class together, so we started attending class and studying together. He was smart, kind, good looking, and had a great sense of humor - so when he finally asked me out, I enthusiastically said yes!

At the end of our very first date, he told me how he felt about me and said that he wanted to date me exclusively. He was so brave! And I was thrilled!

At the end of every date he would set up the time and place when we would see each other again. I never once had to wait by the phone, or wonder if he liked me as much as I liked him. He made me feel completely safe and secure in our relationship, and that was a total departure from any of the other guys I had dated before.

On top of all that, he had such a great sense of humor. He could always make me laugh – and that was pretty much a requirement for me. Needless to say, I was head over heels in love with him! Four months later we were engaged, and eight months after that we were married.

My favorite story about him from those early days is from when we were trying to find our first apartment. Both of us were going back home for the summer to work and save money before we got married. So we were trying to arrange for housing three months in advance, before we left Provo. That proved to be much more difficult than we imagined. We couldn’t find any landlords that knew what their vacancies would be that far in advance.

On his own, Evan decided to spend two whole Saturdays walking around the neighborhoods in south Provo, knocking on apartment doors looking for anyone who was planning to move out at the end of July. He said he felt just like a missionary again – knocking on countless doors without success, and feeling just as frustrated.

I couldn’t believe he went to so much trouble. I was perfectly content to just hope for the best and find something when we came back in the fall. But he felt a strong sense of responsibility to provide for me, he always has, and he was not willing to leave the location of our first home to chance. Eventually he did find us a place, and we moved right in when we arrived back in Provo after our wedding.

Over time, as I have reflected on what Evan went through to find us a place to live, I have drawn comparisons on many occasions to the image of Joseph searching through Bethlehem, without success, trying to find a suitable place for Mary to deliver the Christ child. In many other ways, I have come to believe that Evan was a lot like Joseph.

After watching Evan interact with the freshman boys he was assigned to look after as a Resident Assistant, I knew he would be a good father. But when he actually became a father, he surpassed all my expectations. He has always been, and I know he will continue to be, a truly devoted Dad to Ryan and Lindsay.

He absolutely loved spending time with our children. I would say he craved it! On Sunday afternoons, when all I wanted to do was take a nap, he would spend hours playing board games, or building Legos with the kids. He tried extremely hard to attend every sporting event, piano recital, dance recital, band concert, and school program that Ryan or Lindsay was ever in.

Just a few months ago, even though he was feeling really crummy, he sat in the freezing cold and rain to watch Ryan play football. And he was so happy to be there. At Lindsay’s most recent dance recital, Evan went to the store and picked out some flowers to give to her after the performance. She was so proud of those flowers.

Before Evan died, he wrote letters to Ryan and Lindsay and to me. In all three letters he promised that after he was gone he would do everything in his power to be there for each of us whenever we needed him. I have already felt him close on one particular occasion two days ago when I desperately needed to feel his presence. Because of that experience, I have felt assured that his spirit and his influence will be with us for the rest of our lives.

In closing, I would just like to bear my testimony about a few things.

Never at any time in the last two and a half years did Evan or I feel that this trial was given specifically to us by God, or that we had been chosen to endure this hardship. We have always felt that this was just one of those random, unfortunate things that happen to thousands of people every day in this world. What we have felt is that a loving Heavenly Father has blessed us with everything we needed to endure it, and endure it well.

He gave us wonderful, supportive families. He gave us the best ward on the planet. And most importantly, He gave us the gospel. Without our knowledge of the Atonement of Jesus Christ, and without the eternal perspective that comes with understanding the plan of salvation, this would have been a completely devastating ordeal.

Instead, our faith and testimony of the truthfulness of the gospel has been strengthened and enlightened. I testify that Heavenly Father is real and that he loves his children. I testify that Jesus Christ is our Savior and that because of his willingness to suffer and die for us, Evan is healthy and happy and free of pain and sorrow.

About an hour before Evan’s body died, I felt Evan’s spirit leave. Even though his young and healthy heart continued to beat mechanically and instinctively for a short time afterwards, I knew he was gone. I testify that the spirit and the body are two separate entities, and that our spirits live on after death.

All day Sunday, I missed him so terribly. I knew he was busy enjoying a sweet reunion with his dad and grandparents. His absence was excruciating. But on Monday morning, when I woke and the grief began to sweep over me again, a picture suddenly appeared in my head that he had finished his reunion and that he had returned to comfort me. It was the first time I had been able to picture him the way he used to be. The image of him suffering and struggling to breathe all day Saturday had been so permanently etched in my mind, but finally it was gone.

I testify that Evan’s spirit is now healthy and happy and free of pain and sorrow. I know, without any doubt, that he’s in a better place now and that we will see him again someday. I’m so happy for him and I’m so proud of him. He lived and struggled and died with absolute dignity. He was, and continues to be, a good and kind and wonderful man. I will miss him very much.

I testify of these things and express my deepest gratitude to all of you, and to my Heavenly Father, in the name of Jesus Christ, Amen.

Life Sketch - Given by Joy Germann

2010-02-09T15:13:00.004-07:00

I’m happy to take this time to tell you about the life of my brother, Evan Gardiner and some special memories that I have of him; Evan was just sixteen months younger than me and was born on Sunday, October 20, 1968 in Lowell, Massachusetts.

My father had just finished his doctorate in nuclear physics at Utah State University a few months earlier and had taken a job with the government in Massachusetts, and so Evan began his life as a New Englander, at our home in Billerica, Massachusetts.

My memories of him as a little child; are that he was a quiet, happy little boy who loved building cities with blocks and legos, roaming the woods outside, playing kickball and croquet—and he was mean when he was poison and made us cry--, riding his bike and sledding.

He had a bicentennial quarter collection. He loved to play board games and with his mathematical mind, was hugely competitive which in later years earned him the name of the “Gardiner snake” from his Madsen family. As he got older, he was an avid fan of the Red Sox and of the Boston Celtics during their glory days of the ‘80’s. One highlight of his teenage years was going on a 50 mile canoe trip on the rapids of the Allegash River in Main with his scout troop. Many people remarked that this experience matured him and he became an even better boy.

Evan went to Kindergarten in a beautiful old white Congregational church on the green in the center of town. He attended Parker Elementary School, Howe Elementary School where he ran track, Marshall Middle School and Billerica Memorial High School where he sang in the Special Vocal Ensemble as a favor to his sisters who promised they would be nice to him if he did.

Evan had a streak of mischievousness and sense of humor that he carried all his life and often got him into trouble with his siblings. On one of our trips out to Utah to visit family, I had several accidents which were traumatic for me. For family home evening after the trip, we were asked to draw several pictures of our favorite experiences. Evan drew a picture of me dangling off the north rim of the Grand Canyon with the caption, “Joy fell off the Grand Canyon. We had fun! Another was a picture of my arm burning from a flaming marshmallow with the words, “Joy burned her arm roasting marshmallows. We had fun!”

Evan and his brothers were assigned to take care of our Dad’s large garden during the hot summer days. After weeding for a while, Evan would make some excuse to leave. After a long time, his brothers would discover him lounging on a beach chair in the woods, drinking cold lemonade. He would look up, smile lazily and say, “Just get it done”.

In spite of this, Evan was a hard worker. Weeding and hoeing the garden were just one of the many things that he did. Our Dad would often take him to shovel out the church or the widows he home taught after a big snow storm. He often did yard work for the bishop of our ward whom Evan respected tremendously. The Bishop would pay him and then hand him an extra dollar and say, “Here is a dollar for your mission fund.” Evan credited him with inspiring him with a desire to serve a mission.

At twelve years old, Evan took a job as a paper boy for the Lowell Sun and neither rain, sleet, snow or dark of night kept him from his appointed rounds! His customers loved him because he was so dependable. At 16, he turned his route over to his younger brothers and took a job at a hardware store for about a year, while keeping up his grades in school. After graduating from high school, he took a job with a good man in our ward, plastering in-ground swimming pools. He would travel as far north as Maine and as far south as Rhode Island to do this.

Evan was very good with his money and started saving at an early age. He was very generous with it and would often hold what he called “stash parties” for his siblings and buy tons of junk food that were not usually a part of our diet. He took his sisters to the movies and once took me to a store for my birthday and said, “Pick out any outfit you want”. He paid for the most part of a microwave for my parents’ 25^th wedding anniversary and walked all the way home with it in his arms from the store because he didn’t have a car.

Evan was very independent and from the age of thirteen, paid for all his own clothing, bikes and anything else he needed. He earned enough money to pay for his mission at a time when costs were not regulated and his mission was the most expensive in the church. He had enough left over to pay for school and buy a car.

At nineteen, he was worthy to serve a mission and was called to Zurich, Switzerland, German speaking. He left the MTC for Switzerland on January 19, 1987. It was a difficult mission, and he had many challenges, but Evan wrote to me at the time that it was important for him to be a good missionary and he studied hard to learn the discussions in German.

He recently told me that he was a good finder, that he had a talent to find people who were interested in the church. Some were never baptized or if they did, it was after he moved to a different area and so he was never able to baptize anyone. His mission covered Switzerland, Austria and West Germany and he was able to serve in all three areas.

He tried many creative ways to find people. One of his companions was an excellent violinist. At Christmas time, he and Evan would take his violin out and play to the people in the street. They would get some investigators that way. One of his companions wrote to me that he was ‘impressed with Evan’s confidence and abilities as a missionary. He was known for his excellent German and studied hard to improve, even if some of the means were a little unconventional.’ He later revealed to his companion that it was because he listened to a German radio station in the morning as part of his German language study and knew many of the catchy German pop songs. His singing of them in the car bugged his companion terribly!

‘Regardless of the circumstance,’ this companion wrote, ‘he was bold and courageous, willing to speak up and to lead, and had a strong testimony of the gospel. He was a hard worker, but loved to have fun and horse around.’

This companion told of a funny story that is characteristic of Evan. As a zone leader, he was driving on a wet road and going a little fast. His car didn’t follow the road and he plowed into a picket fence, damaging his car at the same time. While waiting for the car to be fixed, he borrowed another one. When picking up his original car and taking back the borrowed car, he and his companion each had to drive one and tried to stay together as they should as companions. In the process, he and Evan became “BMW stunt car drivers” on the Autobahn as they raced each other home, passing each other whenever they could and trying not to be too reckless while the tires squealed. They pushed those cars to the limit, but ultimately his companion became too cautious, and Evan prevailed. Evan enjoyed rubbing that in for a while.

Evan had started college at BYU before his mission and like many freshmen; the thrill of being away from home for the first time was reflected in his grades. When he came home from his mission, he realized the importance of being a good student, buckled down, and had excellent grades. In fact, in one of his accounting classes, his professor called him in to compliment him on his effort at the end of the class because he had a perfect score on all his assignments and tests. Evan was flattered until the professor asked him if he had cheated, because no one in the history of the class had ever done so well. Evan firmly told him that his work had been all his. Evan decided to major in accounting and graduated top in his accounting class.

Evan met the love of his life, Margot Madsen, in 1990 when they were both Resident Assistants at Deseret Towers on Campus at BYU. She made him feel like he was the greatest guy in the world. She would laugh at his jokes and they were so happy together. He determined very quickly that she was the one for him and told her after only a few days that he was not planning on dating anyone else. They were married August 24, 1991 in the Oakland temple.

Evan loved and had great respect for his new Madsen family. There were never any of the traditional in-law tensions. He welcomed them heartily as part of his family and truly loved them.

He and Margot settled into married life at BYU continuing with school. Evan finished his Masters of Accountancy degree a week before their son Ryan was born.

Ryan was born May 11, 1995. Margot spent three days in the hospital at his birth and Evan spent the whole time with her, sleeping in a really uncomfortable chair. Ryan instantly became the center of his world. Evan put great thought and time into preparing for Ryan’s blessing—it was important that he say what Heavenly Father wanted him to say. Ryan was bottle –fed and so Evan fed him all the time and spent all his extra time with him. Ryan was a terrible sleeper and ended up in their bed which drove Margot crazy, but Evan loved cuddling and holding him. Margot said he was a ‘hands on Dad’. He loved taking Ryan to the park and playing with him. He loved taking Ryan to the Portland Trailblazers and they actually ended up on the 10 o’clock news sports highlights. When I would talk to him, his conversation was all about Ryan.

Evan and Margot very much wanted another child and tried for many years. They were finally blessed with a beautiful girl named Lindsay. Lindsay came to them on Evan’s birthday and Evan called her “my best birthday present ever”. Lindsay’s birth mom brought Lindsay to them and immediately put her in Evan’s arms instead of Margot’s, which both social workers said that they had never seen done before. One of the reasons Lindsay’s birth mom picked Evan and Margot was that she wanted Lindsay to have a returned missionary dad who was a worthy priesthood holder. She didn’t know that it was Evan’s birthday when she gave Lindsay to them.

Evan loved Lindsay from the very start. I remember how he glowed the day she was sealed to their family as he expressed his gratitude for her and gratitude for the support of family and friends during that time. He loved to take her to the park by their house and go on walks with her. When he was sick and had to stay at home, Lindsay was his pal and they would play hundreds of games of Shutes and Ladders and Candy land.

Evan taught Ryan and Lindsay their letters with sponge letters in the tub, so that within months after starting Kindergarten, they could both read.

As a family, they really enjoyed hiking, especially Evan. He would take Ryan to climb the 'Y' many times. They would hike Provo Canyon with Lindsay in her backpack and he would hike Timp and Squaw Peak.

Evan had a good heart. His sister Jan remembers how he would try to comfort her when she was sad. He protected me from mean people when I was younger by saying, “Don’t do that. She’s my sister”. When I was sick with cancer, he would often call me on his lunch break to see how I was. If he ever noticed anything on the news near me that was dangerous, he would call and check on me.

Evan loved his mom and felt very protective of her. He did all he could to help her. When our dad passed away suddenly, Evan was the first to arrive. He put his grief aside and immediately set to work, taking care of all of my dad’s affairs, getting everything ready for the funeral, dealing with the insurance company, and making sure that my mom’s needs were met.

He did not allow himself to break down until much later when everything was finished, which was a really difficult experience for him. When my mom was preparing to move to Utah, he and Margot flew home to Billerica to help my mom clean out the accumulation of thirty years from her house. He regarded the care of my mom as his personal responsibility from his dad. He regarded the care of her finances as a sacred trust to make sure that she would have enough to live on. He did the best he could and always had her best interest at heart. Margot mentioned that she was sometimes jealous because he tried so hard to help Mom.

Evan did not crave the lime light at church and tried very much to be behind the scenes. He had seen the burden his dad carried as bishop and did not aspire to that calling. However, he was a willing servant to do whatever Heavenly Father asked him to do. He was executive secretary twice and Elders Quorum president.

Evan began his professional career as an accountant for the prestigious company Deloite and Tusch in Portland in 1995 and worked there for three years. He received his CPA after only six months of being there and was promoted twice, finishing as senior account manager. His work load was heavy and he averaged 60-80 hours a week there. It left him with very little time for Margot and Ryan, and was one of the most stressful times of their lives. On top of this, he was Elder’s Quorum president in a ward with very little active priesthood, so he functioned with no counselors for 8 months, did all the home teaching and priesthood lessons while holding Ryan in his arms.

In 1998, he took a job with Novell in Utah as an accountant. He and Margot moved to American Fork. They felt really drawn to their neighborhood and Margot says she now understands why because of all their kind and supportive friends. He was very successful at Novell. He discovered ways to save Novell a great deal of money and became employee of the year for his department.

Although he loved the people that he worked with, his workload began to increase almost to the point it was in Portland, so he began to look for other opportunities. His dream was to work for BYU and when a job in Regulatory Accounting came along, he jumped at it. It was a wonderful opportunity for him. He loved going to work every day and was good at his job. Not long after he was hired, he was introduced to President Samuelson, who shook his hand and said, “You’re the one who is going to keep me out of jail, right?”

He felt so blessed to work at the university. Margot decorated his office with beautiful pictures from Switzerland and he had a lovely view outside his window of Timpanogas and Squaw Peak. He loved his boss and the people that he worked with and hoped to work there the rest of his life. All his colleagues respected him. Evan said that it was the saddest day of his life when he became sick and had to tell his boss that he was no longer able to work. So much of his identity was wrapped up in what he did and it was very, very difficult for him not to be there anymore.

In 2004-2005, Evan started having mysterious health problems. He and Margot went to many doctors, trying to get a diagnosis and eliminating possibility after possibility. Evan told me that he spent hours on his knees, pleading with his Heavenly Father to help him know what was wrong and to help him get better. It was a very difficult time, emotionally and mentally for both of them, because no doctor was able to help him, yet he was able to hold it together at work and support his family. Margot was by his side through the whole ordeal, suffering alongside him.

In 2007, Evan started exhibiting symptoms that could no longer be said were in his head or caused by strange microbes. He had an MRI and they received the devastating news that he had a brain tumor called a glioblastoma, that was located in the center of his brain which controlled his sleeping and breathing and therefore was inoperable. Evan and Margot were devastated, but he responded with his traditional humor by saying matter of factly, “I’m toast” and tried to laugh about it.

We all continually prayed for a miracle as he went through radiation and two years of chemotherapy, which caused his tumor to shrink by 90%. At that point, the chemotherapy became ineffective and was discontinued. He began taking an infusion of the drug Avastin, which was supposed to prevent blood flow to the tumor, but Evan was unable to continue taking it because it was destroying his kidneys.

He suffered horribly from the effects of the chemotherapy. He lost his hair, gained great amounts of weight and had awful pain, nausea and exhaustion. A byproduct of where the tumor was located was that he was unable to feel emotion. In some ways, this was a blessing because he didn’t have great anxiety, but it also caused him great sadness because he was unable to feel joy either.

Those who talked to him were always so impressed that he never complained about his trials. I think I understand this better from an experience a few months ago when one of my children was struggling. He gave her a blessing and which said that Heavenly Father loved her, and that no matter what the struggle she was going through, there was a always a silver lining if she looked for it, and Heavenly Father would help her get through it. He was always positive and tried to make other people feel better about the things they were going through.

He did his best to continue to live his life. He would clean the house, help with the laundry and make dinner. He took Lindsay and Ryan to their piano lessons and got Lindsay ready for school. He would try to be at Ryan’s baseball and football games. He and I talked about what an unselfish thing it was to try and get better with the chemotherapy, because if it were up to him alone, he would not do it and let the disease take over. However, he wanted to be with Margot, Ryan, and Lindsay for as long as he could and so he paid the price he needed to for that to happen.

Evan started to have problems with his vision and painful headaches. Another MRI done the week of Thanksgiving revealed a new tumor on his brain stem. The doctor told them that they needed to be prepared that Evan might not make it to Christmas. This was quite a blow. Evan said, “I don’t want to go. I just want to be with my family”, even though for so long he had been ready because he felt so bad.

Evan’s eyesight continued to worsen and he began to lose his balance and fall, which was very frightening. He was able to get through Christmas which was a blessing to their family. Shortly after this, he had to be confined to a hospital bed. He became very sleepy. As he began to decline, he still kept his humor and continued to make his family laugh.

I was blessed to talk to Evan almost every day for the last few months and had sweet, loving conversations with him about how blessed he was with a wonderful family, and how much his Heavenly Father loved him. Toward the end, he was unable to say much. I wasn’t sure if he understood all that I was saying to him. Nevertheless, the last few days, I really felt like he heard me and so I would just tell him how much I loved him and some of the things I was grateful for about him.

The last time I talked to him was on Friday and he seemed quite alert, but after a few minutes, I could tell that he was tired. I said to him, “I wish I was there to sing you to sleep.” Then I realized I could sing him to sleep on the phone and so I said, “I am going to sing to you, Evan. I’m going to sing to you my son Patton’s favorite lullaby which is The Man in the Moon. This is what I tell him when I sing it to him. Your great-grandma Hurst sang this to Grandma Gardiner. She sang this to me when I was a little girl and now I sing it to you. Someday, you will sing it to your little boy or girl. So here I go.” I sang it to Evan, doing it badly because I was trying not to cry and then I said, “How was that?” Evan--funny to the end--said, “Oh, stellar.” I told him, “You need to wrap that song up around you like it was a hug from me and know how much I love you.” I told him I would call him the next day and told him I loved him. He said, “Love you, too.”

That night, Evan started to struggle to breathe and the next evening on January 16^th, after visits from many of his family, he passed quietly away with Margot next to him.

Just before he was diagnosed, I fasted and prayed with great urgency that he be made well and received a wonderful feeling of peace and that everything would be ok. I took that to mean that he would get better, and held that to me with great faith. As time passed and we realized that he was not going to beat this thing, I began to realize that the feeling of peace could mean something else. I realized that to accept our Heavenly Father’s will for Evan would bring peace and to trust that his will was right. I realized that I could not be happy any other way, and peace has come.

We are so grateful to Margot for her unconditional love for Evan and her support and kindness to him. She was and is the perfect wife and friend to him. She has been so generous to share him with our family, even when she probably needed him herself. We are grateful to Margot’s parents and my mom, who unselfishly helped with Evan’s needs when he was unable to help himself. We are grateful for the kindness of family and friends to Evan, Margot, Ryan and Lindsay during this hard time.

I loved my brother Evan with all my heart. He was an “example of righteous living” as my dad wrote as his bishop on his missionary application. He was courageous, loving and kind. We are so grateful to have had him for the time we had. We are thankful that his earthly suffering is over and that he is without the pains and problems that plagued his body for so long. We are grateful to know that we haven’t lost him, and will see him again.

In the name of Jesus Christ, Amen.

Tribute to Evan - Given by Monte Gardiner

2010-02-09T11:52:00.006-07:00

To those of us who knew him, Evan was a good man. To those who really knew him, he was a great man. In everything that really matters, he excelled, and it has always been an honor to be his brother.

There are lots of jokes out there about accountants, almost as many as about lawyers. I'll refrain from telling any today, even though I suspect that Evan would very much approve and encourage that sort of thing. In some respects, Evan did nothing to diminish the old bookkeeper stereotypes. He could be analytical, pragmatic, dry, understated, risk-averse, stoic, and regimented. But he was also ironic, caring, conscientious, irreverent, introspective, mischievous, and even poetic. We certainly can't hope to do justice to the man today. What I am hoping to offer you is the perspective of a little brother.

Most boys grow up wanting to be like their dad. Not me--I wanted to be like my big brother, Evan. Five and a half years my senior, he was old enough to be authoritative and ingrained in the world of grown-ups, but he was also young enough to be an advocate, a mentor, and a friend. This concept--that of an elder brother who fills these roles--should be very familiar to us who profess a belief in Jesus Christ.

One of my earliest memories is that of the 3 of us brothers playing outside on one of those blustery Spring days you find in New England, where the weather can change at a moment's notice. As luck would have it, the sun had given way to dark clouds and finally to rain showers, which forced us to abandon our playtime and go back indoors. At Evan's suggestion, each of us brothers knelt down and prayed, in turn, that Heavenly Father would make the sun come out again. Sure enough, not long after we had finished, the sun did break through and start shining, casting a peaceful glow on the maple and apple trees in our yard. As we resumed playing, I remember the sheer elation as each of us felt that our prayer had been heard. And in my mind's eye, even now (decades later), I can still see my big brother kneeling and pouring out his little heart to his Heavenly Father.

It's hard to over-estimate the importance of the precedents set by this oldest brother. This importance is not lost on parents, either, which partially explains why they devote an inordinate amount of time and energy to disciplining the oldest child. Evan certainly had it much harder than his younger brothers, who benefited greatly from the trail he blazed. I'd like to touch on a few ways that Evan shaped his two younger brothers, Alan and me.

1. Evan loved good, clean fun. As a boy, Evan loved sports, particularly basketball, he loved riding his bike and lifting weights, board games, and being outdoors. He also loved a good prank, but his antics were always harmless and were never pointed or malicious. Now there are lots of vices and troubles that a teenage boy can fall prey to, but Evan's behavior never game my parents cause for major concern. Whether it was dating, or driving the family, Evan set a high standard for both of his younger brothers, and it's in large part due to his example that both Alan and I made through our teenage years without any serious setbacks or detours.

2. Evan taught us that we can do hard things. Whenever he started a project, he was meticulous in seeing it through to completion. He always seemed to be able to figure things out, even if there was no one there to teach him. Our father always placed a great deal of responsibility in him as the oldest boy, and Evan responded by applying himself and achieving results that impressed even our dad. He had the strength of our father, and the quiet determination of our mother. He was a tenacious worker who hated being idle. And in retrospect, I think that must have been the single hardest things about getting sick. Evan taught us that the most meaningful and rewarding achievements in life are the ones that come from hard work and struggle.

3. Evan went to BYU. I suppose we younger boys could have gone elsewhere to school, but after hearing the glowing reports Evan relayed about BYU, we hardly gave a thought to any other school. We were drawn by the siren call of Evan's description of campus life, the pretty girls, and the independence that 2,200 miles of separation from our home promised to provide. Evan recognized that BYU was a special institution with a unique mandate, and I'm sure that played a role later in life when he chose to seek employment at the school.

4. Evan went on a mission. He didn't waffle, didn't struggle over the decision. He simply went because he knew it was the right thing. It's not hard to imagine all the things in my life that could be very, very different if Evan had failed to set the example and serve a full-time mission.

5. Evan was an independent thinker. He knew the importance of keeping the rules. He also recognized that while some rules should never be broken, it's o.k. to cut yourself some occasional slack and take a few liberties, especially if your heart is in the right place. For example, he liked to tell about a time when, toward the end of his mission, he drove way outside mission boundaries in order to visit a town in Bavaria which was home to some of our German ancestors.

When I left for my mission, Evan infiltrated the MTC (Mission Training Center) campus and left a large grocery bag full of contraband (potato chips, candy, root beer and so forth) outside my dormitory door. That was no small feet considering the entire place was in lock-down mode and heavily patrolled by a cadre of MTC cops, and it elevated him to hero status in the eyes of my entire district.

6. Evan knew how to be serious, but he never took himself too seriously, and he understood the value of a good joke. I think all of us could rattle off examples of Evan's humor. I'll share a quick example--Along with others from my family, he accompanied me to the MTC to see me off when I went on my mission. There in one of the auditoriums, we sat there while the president of the MTC stood up and welcomed us to the Missionary Training Center. He was a huge man who probably weighed in excess of 400 pounds. As he introduced himself, he proudly declared to all the bright-eyed Elders, "I am your exemplar. Do what I do, and you won't go wrong." Whereupone Evan leaned over to me and whispered, "You better start eatin'."

7. Evan loved foreign language. As his younger brothers, we followed his example in this as well. He made a kind of game out of it. He had fun with the sound of foreign words and cadences, with colloquialisms and etymology. He took pleasurein dialect and regional nuances and history and culture. While on his mission in Switzerland, he sent me numerous German-language comic books and a book entitled 1,000 German Idioms (that contained such hits as "You are the rooster in the basket" and "I've stepped in the grease saucer.") His enjoyment of language opened doors for us, and our lives have been infinitely richer as a result.

8. Evan had his priorities straight. He was talented, and he could have chosen any number of professions. Years ago, I asked Evan why he had chosen to go into accounting, and I think his answer was telling. Essentially, he said that he viewed that profession as recession-proof, as a job that would always be in demand and allow him to provide for his future family. Evan grew up in a home where it was made clear that the boys would one day assume the role of bread-winner, and that there were such things as budget cuts, lay-offs and hard times. As a result, one of the values Evan prized most was stability, and that value informed all of his choices and he conveyed that on to us brothers through the choices he made.

9. Evan settled in the West. He loved the mountains, the vast open spaces, and the feeling of belonging he sensed in the land his pioneer ancestors had once settled, and where much of his extended family lived. He basked in the proximity of his house to Mt. Timpanogos, which to him was a singular icon of the country he loved so much. He loved the idea of bringing up his family in a place that embraced the valued he held dear--a place where he was not in the minority. A place where he could see evidence of his beliefs dotted across the landscape in the form of chapels, temples, and universities. Evan's love of the West, and Utah in particular, was infectious and rubbed off on all of us.

10. Most importantly, Evan married well. This is the single greatest example he set for me. In the marriage supermarket of BYU, there are all sorts of personalities from which you can make your selection. Not everyone goes home a satisfied customer, and unfortunately there is not satisfactory return policy. At some point in 1990, we began to hear reports about a certain Margot Madsen, who was "different from all the other girls Evan had ever dated." I got to meet Margot over Christmas break, when she came to visit us in Boston. From the onset, I was struck with how intelligent, substantive, and fun Margot was. And the best part was that even thought I'm sure we gave her plenty to re-consider, she wasn't scared off by our family! In Margot, Evan found a true partner that he could love and cherish, and as an impressionable young 16/17 year-old, I determined that that was exactly the type of woman I would someday marry.

In a day when the law of chastity is considered passe and covenants are routinely broken, Evan was a model of virtue. After he and Margot were married, I don't think he so much as looked at another woman. He made his family the center of his life, and he understood that it is our children who bring life's greatest joys. He was delighted when Lindsay joined the family, and he spoke repeatedly and with great pride of Ryan, and reveled in what a fine young man he has become.

**********************************

Evan believed in the Plan of Salvation. He viewed this life as a sort of proving grounds that prepares us for the hereafter. He believed in the literal resurrection, and that the bonds of family and friendship need not end at death. He understood the necessity of making and keeping sacred covenants. He recognized the far-reaching consequences of his own actions, and knew that the blessings promised to him and his posterity in the temple are contingent upon his faithfulness. He didn't spend a lot of time pontificating or engaging in philosophical debate . . . the strength of Evan's convictions can be measured in the way that he lived his testimony.

Before I close, I want to express gratitude to Margot on behalf of all of us for the exceptional job she did in caring for Evan, prior to his diagnosis, during the course of his treatments, and also at the end of his life. They say that Ginger did everything Fred did, but backwards and in high heels, and that very much applies to Margot. At every step of the way, she demonstrated intelligence, courtesy and grace that so very much defines her.

In summary, as Evan's little brother, I can plot the exact trajectory of my own life as a function of the trail that Evan blazed. Everything good in my life has come as a direct result of his good example. I have 4 young sons, and I would be extremely gratified if each of them grew to the caliber of their Uncle Evan. He is a righteous son of our Heavenly Father. He honored his priesthood. He made his family the center of his life's work. He suffered the greatest of hardships with grace and good humor. He lived his testimony. As he awaits that day on which his body will be reunited with his spirit and he will again be surrounded by the loved ones he has temporarily left behind, he can rest assured in the knowledge that in every material respect, he effectively followed the Savior's example.

In the name of Jesus Christ, Amen.

Closing Remarks - Given by Bishop James Pack

2010-02-09T11:24:00.004-07:00

Just this past November, Evan substituted in our Gospel Essentials class during Sunday School. He had accepted a calling to serve as an assistant Ward Mission Leader, and our normal instructor was unable to teach that day. So, despite his challenging condition, Evan accepted the request from our Ward Mission Leader to substitute teach that Sunday.

This was just a week or so after he and Margot learned about his second tumor, and the reasonably imminent situation he was in.

During this lesson, Evan taught a very profound truth and an important principle regarding our duty and responsibility as children of God and brothers and sisters. His communication was very specific and pointed, almost a plea to those of us in the room. It was evident to me that he was not simply reading out of the manual, nor was the statement intended as a "feel good" Sunday School statement.

Evan said that we need to forgive others. He taught, and I quote, "if I have been offended, it's my problem. It's my job to forgive." He used the term "my," . . . "it's 'my' problem" and "it's 'my' job to forgive."

I could tell that he was as sincere about this testimony of truth as anything he has ever taught before. It came with such clarity of purpose that I wrote it down and recorded it in my journal.

Reflecting on Evan's statement that week, I was reminded of some Old Testament teachings. From Malachi we read:

"Who shall stand when he appeareth? For he is like a refiner's fire and fullers soap. And he shall sit as a refiner and purifier of silver: and he shall purify the sons of Levi, and purge them as gold and silver, that they may offer unto the LORD an offering in righteousness." (Malachi 3:2-3)

And also a verse from Zechariah:

"I will refine them like silver is refined, and test them like gold is tried. They shall call on my name and I will hear them; I will say, 'They are my people,' and they shall say, 'The LORD is my God.'" (Zechariah 13:9)

Evan's teaching was in indication of the faith and the understanding that comes with enduring the refiner's fire.

Thou challenging and difficult, this process of refining and purifying has a glorious result. The scriptures use metaphors to describe this process . . . the heat and flame that purify gold and silver, and the boiling water and caustic fullers soap used to turn raw wool to white cloth.

Our Father in Heaven will sometimes prepare us for glory and a fullness of all He has to offer, by trial. Yet the result of this trial is nothing less than miraculous.

President James E. Faust wrote:

"Here, then, is a great truth. In the pain, the agony, and the endeavors of life, we pass through a refiner's fire, and the insignificant and the unimportant in our lives can melt away like dross and make our faith bright, intact, and strong. In this way the divine image can be mirrored from the soul.

"It is part of the purging toll exacted of some . . . . In the agonies of life, we seem to listen better to the faint, godly whisperings of the Divine Shepherd.

"Into every life there come the painful, despairing days of adversity and buffeting. There seems to be a full measure of anguish, sorrow, and often heartbreak for everyone, including those who earnestly seek to do right and be faithful.

"States Peter, 'The trial of your faith, being much more precious than of gold that perisheth, though it be tried with fire, might be found unto praise and honour and glory at the appearing of Jesus Christ." (James E.Faust, "Refined in Our Trials," Ensign, Feb. 2006)

Brothers and Sisters, Family and Friends, Evan's passing, though tragic in its timing, is accompanied by personal faith and an understanding of eternal principals.

Evan had a deep and abiding testimony of the Gospel of Jesus Christ. He valued family and service. He was humble and accepting of our Father's plan for him. Evan was willing:

* As stated in the book of Mosiah, willing to submit to all things. (Mosiah 3:19)

* From the book of Helaman, willing to believe. (Helaman 6:36)

* And as stated in the Doctrine and Covenants, scripture revealed in modern times, Evan had a willingness to observe covenants by sacrifice (D&C 97:8)

Evan understood and accepted. He didn't leave with fear, but returned home with faith, and I might add, even a hint of humor. Evan understood the important things.

It is my prayer that we might be willing to accept the counsel taught by Evan this last November and forgive others that may have wronged us. And as President Faust stated, "let the insignificant and the unimportant in our lives melt away like dross and make our faith bright, intact, and strong."

I put my testimony beside Evan's, that it is through love, humility and sacrifice that we make ourselves worthy of eternal reward. And that all things, even Evan's passing and the struggles that remain ahead, will be overcome through the merit, and grace, and atoning sacrifice of our Savior.

These things I testify of in the name of Jesus Christ, Amen.

Evan's Obituary

2010-02-01T23:40:00.001-07:00

H. Evan Gardiner
(October 20, 1968 – January 16, 2010)

H. Evan Gardiner, age 41, passed away peacefully at home on January 16, 2010 after a courageous two and a half year battle with brain cancer.

Born October 20, 1968 to Harold and Janet Gardiner, Evan was raised in Massachusetts and graduated from Billerica Memorial High School in 1986.

He served a full-time mission for the Church of Jesus Christ of Latter-Day-Saints in Zurich, Switzerland from 1987 to 1989.

Evan attended Brigham Young University where he met his wife, Margot Caroline Madsen. They were sealed in the Oakland, California Temple on August 24, 1991, and recently celebrated their 18th anniversary. He was a loving husband and a devoted father to their two children, Ryan (14) and Lindsay (7).

He graduated from BYU in 1995 with a Master’s Degree in Accounting and began his career working for Deloitte & Touche, in Portland, Oregon. He later returned to Utah to work for Novell in Provo. In 2002 he landed his dream job as a Tax Specialist in the Financial Services Department at BYU. He loved his work and always enjoyed his association with colleagues and co-workers.

Evan will be remembered especially for his quick wit and dry sense of humor. He could always make us laugh, even at the end! In his spare time, Evan loved hiking, working in the yard, playing games, attending sporting events, and above all spending time with his family.

He is survived by his wife and children, his mother Janet, his siblings Jan (James) Jordan, Joy (Tim) Germann, Alan (Marci) Gardiner, and Monte (Diane) Gardiner, his parents-in-law Kent & Ella Madsen, his sister-in-law Anne Madsen, and his brothers-in-law Paul (Danielle) Madsen, and David Madsen. He will also be deeply missed by his aunts, uncles, cousins, nieces and nephews. Evan was preceded in death by his father, and both sets of grandparents.

The family wishes to thank all the friends and relatives who provided unwavering love and support during the last several years, and express their sincere appreciation to the doctors, nurses, medical staff, and hospice aides who assisted in Evan’s care and treatment.

Funeral services will be held on Thursday, January 21, 2010 at 11:00 am, at the LDS Hillcrest 4th Ward Chapel, at 700 North and 350 West in American Fork, Utah. A viewing will be held at the same location on Wednesday, January 20, 2010 from 6:00 to 8:00 pm, and from 10:00 to 10:45 am prior to services on Thursday.

Interment will be at the American Fork City Cemetery. Funeral services are being provided by Anderson & Sons Mortuary in American Fork.

Monday, January 18, 2010

2010-01-18T09:54:00.005-07:00

Dear Friends & Family,

We have scheduled Evan’s funeral services for this Thursday, January 21^st at 11:00 am.

The viewings will be held the night before, on Wednesday, January 20th from 6:00 to 8:00 pm, and also prior to the services on Thursday, from 10:00 to 10:45 am.

The viewings and funeral will be held at the Hillcrest 4th Ward Chapel Building which is located on the corner of 700 North and 350 West in American Fork, Utah.

I will post his obituary on my blog at www.mgardinergazette.blogspot.com later this afternoon. It will also run in the Deseret News newspaper on Tuesday and Wednesday of this week.

Thank you for all the kind messages and acts of services that we have received in the last few days! We love you all!

Much love,
Margot

Sunday, January 17, 2010

2010-01-18T09:48:00.002-07:00

Dear Friends and Family,

Evan passed away last night around 11:45 pm. He started having trouble breathing late Friday night/early Saturday morning, and Hospice came out to start him on morphine and some other medications to keep him calm and comfortable. He spent all day Saturday in a pretty heavily sedated state, but his young and healthy heart worked laboriously all day to keep him breathing. It was truly awful to watch his body struggle like that, even though we knew he was most likely comfortable and unaware.

Finally, after everyone had gone home and the kids were in bed, I got to spend a few minutes alone with him. Then I turned off the lights and laid down on the couch nearby. I listened to him breathe for just a few minutes and then suddenly he just went quiet. He was completely silent and peaceful. My sadness was overwhelming, but I was so happy for him. That’s all I can write right now.

I’ll let you know when the funeral will be. Thanks for all your love and support throughout this journey.

Love,
Margot

January 1, 2010

2010-01-01T23:23:00.008-07:00

Hey Everyone!

I'm sorry it's been so long since I wrote last. Between finishing up my last two weeks of work, getting ready for Christmas, and managing the increasing demands of Evan's care, there just hasn't been much time to sit down and write.

About a week after I wrote last, Evan began receiving in-home hospice care. At first our nurse, Sharon (who is wonderful), would visit once or twice a week just to check his blood and adjust his medications as needed. After a week or two of that routine, Evan's blood started going crazy - it would get dangerously thick one day, and two days later get dangerously thin. Then he developed diabetes, his blood sugar was in the four and five hundreds (it's supposed to be below 150). So we were constantly adjusting his blood thinning medication, checking his blood sugars, and trying to find the right dose of insulin. So, the nurse started coming about three times a week.

It's taken several weeks, but we finally seem to have the blood issues under control. His blood thickness has finally stabilized on the new dose of blood thinners, and he gets a combination of two types of insulin in the form of six shots a day to keep his blood sugar in a safe zone. Luckily the needles are extremely small, so it doesn't cause him too much pain or bruising.

In the meantime, Evan has been getting weaker, sleepier, and mentally slower everyday. Also, the steroids have caused his face and upper torso to swell up again which makes it more difficult for him to get up and down. The week leading up to Christmas, I wasn't sure he was going to make it. There were several nights when he got really disoriented and seemed like he was having a hard time breathing. Every night we would go to bed wondering if he would still be there in the morning. But he made it through Christmas, thank goodness! That was such a relief.

As I said my prayers last Sunday night I was feeling so grateful that we had made it through Christmas without any major trauma, and told Heavenly Father that for whatever needed to happen from here on out, I was ready. Just a few hours later things took a massive turn for the worse. About 3:00 in the morning Evan got up to use the bathroom and we discovered that he had completely lost his sense of balance. He couldn't even hold a standing position without tipping over. Because of the diabetes, he was having to use the bathroom every hour during the night, but because his memory had become so bad, each time he would forget about the balance issue and try to get up without me - resulting in fall after fall after fall. It was probably the worst night of the last two and half years.

First thing Monday morning, I called our nurse and within about an hour a hospital bed was delivered and set up in our family room. It took four men to help get him safely downstairs from our bedroom. A catheter was put in place so that he wouldn't have to get up so much, and the hospital bed has bars on the side which helps deter him from trying to get up without assistance.

Although it had been something I was really dreading, having him in the hospital bed has actually been somewhat of a relief. The whole falling thing was so terrifying to me. Having him in a safe place and somewhat immobilized has lowered my anxiety level considerably. And at night, I sleep just a few feet away on the couch so he can't try to get up in the night without me hearing him anymore. I sleep a lot better knowing that.

The hospice aides come every day now and have been great to get him up and help him get showered everyday; our nurse visits or checks in with us by phone everyday; my parents and Evan's mom have been helping a ton; and our friends and neighbors are just a phone call away - so I have more help than I know what to do with.

For now, Evan still has more lucid moments than not, so that's been good. But I know that could change at any time. I don't know whether he has days or weeks left, but we're just doing our best to keep him comfortable, and taking things one day at a time.

Thanks for keeping us in your thoughts and prayers. We have been the recipients of literally countless acts of kindness and generosity, big and small, over the last several weeks. Please know that each of them have meant a great deal to us. Trying to thank each of you individually is simply overwhelming to me right now, but please know how much we love and appreciate each of you.

I'll do my best to keep you posted!

Love,
Margot

November 29, 2009

2009-11-29T19:58:00.011-07:00

Dear Friends and Family,

We hope everyone had a nice Thanksgiving! We have appreciated all the messages of love and concern that so many of you have sent over the last two weeks. Thank you so much!

I wish I had better news to report.

The tumor board met a week ago Thursday and recommended a new round of radiation for Evan. However, Evan's radiologist (Dr. Watson - whom we trust more than any of Evan's other doctors) was out of town and unable to attend the meeting, so we wanted to get his opinion before we made any decisions.

On Monday of this week I had a long conversation with Dr. Watson and he was very honest and direct, which is what we've always appreciated about him. First of all, the "Gamma Knife" radiation surgery is not an option because of the new tumor's location. The type of radiation Evan could receive would be a series of 5 high-dose treatments over a period of two weeks. However, when I asked Dr. Watson what he thought we would accomplish by doing it, he said that it might buy us another two months, at best, and then we'd be right back where we are now.

Considering all the side effects it could cause for Evan, and with so little benefit, we called Dr. Watson back on Wednesday and told him that we had decided not to do it. He was very kind and compassionate and tried to prepare us for the coming weeks. He also arranged for us to start working with hospice services. We'll have our first meeting with them sometime this coming week. Dr. Watson told us to prepare for the possibility that Evan might not make it to Christmas.

Fortunately, Evan had a great day on Thursday and thoroughly enjoyed spending the day with his family at his Mom's house in Layton. Since then he's had a rough couple of days. His vision has taken a huge turn for the worse, and he's been losing mobility and/or falling at least 5 or 6 times a day. Most of the time he's near the couch or the bed, so he has a soft place to land. But twice he's fallen and hit his head on the hard floor - so it's a pretty serious concern. On Friday we put him back on the steroids, hoping that by reducing the swelling around the tumor it would relieve some of these symptoms. So far, it hasn't helped.

In spite of everything, Evan has managed to stay in relatively good spirits - making jokes about how I should look on the bright side because I won't have to buy him any Christmas presents this year. Typical Evan.

As always - we'll keep you posted. Thanks for your prayers!

Love,
Margot

November 13, 2009

2009-11-14T01:43:00.009-07:00

Dear Friends and Family,

A lot has happened in the last few weeks and months, so I have some catching up to do.

The last time I wrote, Evan had been off of chemo for 3 months but was still receiving treatments of a maintenance drug called Avastin every 3-4 weeks. We have now stopped the Avastin treatments as well. To make a long story short – Evan started showing signs of kidney damage, which is a common side effect among patients who have been on Avastin for long periods of time. We could not have continued that treatment without causing permanent kidney damage or kidney failure, so it was not a difficult decision. After almost 2 years on the drug, Evan’s body had had enough.

The last time I wrote I also mentioned that Evan was having problems with double-vision, but that this problem had been corrected with some special glasses. The glasses worked wonderfully for several months. However, things started to change about three weeks ago. Among other things, he started getting the double-vision again, even with the glasses. Also, he started sleeping a lot and would have a difficult time waking up – very groggy and disoriented. Then, just in the last two or three weeks he started experiencing what we’ve now been told is something called “sleep paralysis.”

Basically, when he wakes up from sleeping (during the night, in the morning, or after a nap) he has trouble moving. Sometimes he just can’t move his legs, or if he tries to stand up his legs buckle underneath him and he falls back onto the couch or the bed where he was sitting. It usually passes within 5 or 10 minutes, after he’s had time to “wake-up” a bit more. But then, last Saturday evening he fell asleep while we were watching a movie and at one point started mumbling and his arm twitched a little bit. I just assumed he was having a vivid dream and talking in his sleep. Several minutes later he woke up and told me that he had been awake but couldn’t open his eyes, couldn’t speak, and couldn’t move his limbs. He had been trying to call out to me or hit me with his arm to tell me he was in trouble, but he couldn’t move. It was pretty disturbing.

This afternoon (Friday) Evan had an MRI and the fears we had been harboring all week were confirmed. Evan has a new tumor, located in his brain stem. The original tumor showed some slight enhancement, but Dr. Choucair was much more concerned about the “new enhancement.” Because the brain stem is such a tight, narrow space, there just isn’t any room for a tumor to grow without causing problems. Dr. Choucair will be taking Evan’s case to the Tumor Board which meets next Thursday morning (this is where the top oncologists and radiologists from the Huntsman Center, U of U, and IHC meet together to discuss their difficult cases), and he will call us with their recommendations next week.

However, Evan’s body has been through so much! The thought of putting him through radiation and chemotherapy again is unbearable. At this point, we’re planning to focus on him and our family instead of the cancer.

It’s been a really tough week, and we appreciate your love and support more than anything we can express. We’ll keep you posted as things develop.

With love,
Margot

September 20, 2009

2009-09-20T16:52:00.004-06:00

Hey Everyone!

We just wanted to let you know that Evan's latest MRI went well. He's been off of chemo for three months now, and the tumor still looks the same. Three months without nausea and no new growth is great news!

We weren't supposed to have another MRI until the end of September, but they moved it up because Evan has been having problems with double vision. It started back in June, but got progressively worse over the summer. With the help of Evan's cousin (thanks Roger!) we got in to to see a great eye specialist who spent a lot of time with us. He determined that the problem is being caused by pressure on "cranial nerve #4." (Sounds very official doesn't it?)

Based on the MRI, this particular nerve passes right through an area in Evan's brain that is starting to show signs of damage from the radiation treatment he had two years ago. Evidently, radiation damage can show up as much as 10 years after the fact (comforting thought). But at least it's not being caused by a new tumor or something of that nature. So Evan is now the proud owner of a high-tech pair of glasses with a prism coating over the right eye. It has worked like a charm!

In other news, the kids are back in school and I started working again. Ryan is in 9th grade this year, Lindsay started 1st grade, and I'm the new secretary for the Counseling Center at Pleasant Grove Junior High School. Working again has been an adjustment, to be sure, but it's actually working out really well for all of us!

That's the latest. I hope you're all doing well! Thanks for all your support!

Love,
Margot

June 15, 2009

2009-06-15T22:14:00.001-06:00

Today's MRI Results:

Evan's MRI showed no signs of new growth today, and our doctor was very pleased! So pleased, in fact, that he suggested we stop the chemo! (Yes, we had to pick our jaws up off the floor too.)

We were completely shocked! We thought, best case scenario, maybe he would space the treatments out to four weeks instead of three if the MRI looked really good. At the very least, we were prepared to be grateful for anything, as long as we didn't have to go back on the two week schedule. But stopping the chemo altogether had not even entered the realm of possibilities for us yet.

I was thrilled, but Evan was a little more cautious about it - it is his life at stake after all. But Dr. Choucair talked with us for a long time and we feel good about it. Basically, he said that we've probably seen all the reduction we're going to get from the chemo, and (considering how lousy it makes Evan feel) it's probably doing more harm than good at this point.

So, from here on out our goal is to improve Evan's quality of life and simply keep the tumor from growing. That means getting rid of the heavy chemo drug (called Irinotecan), but continue receiving I.V. treatments of the drug called Avastin (which Evan has already been receiving with the Irinotecan for the last 15 months).

The Irinotecan is what makes Evan so tired and sick, so he should start feeling a lot better without that. And hopefully, the Avastin will be enough to keep the tumor from growing. I don't understand exactly how it works, but somehow the Avastin effects the blood vessels in such a way that it cuts off the blood supply to the tumor. Without the blood supply, the cancer cells cannot multiply and reproduce so easily.

Of course, as the doctor explained, all this comes with a certain level of risk. Don't ask me how or why, but for some reason once you go off this chemo drug, the cancer cells can (in some cases) get really smart and find a way to build up a resistance to that drug. If that happens, and the tumor starts growing again, this chemo may not be able to stop it a second time around.

With other types of cancer the patient can move on to a different type of chemo drug because there are lots to choose from. However, with glioblastoma multiforme there are no other chemo drugs out there to try. So unless they come up with something new between now and whenever Evan's tumor starts growing again, we could be shutting the door on the one and only treatment option available to us.

When we stop and think about it that way, it feels a little bit scary. On the other hand, when we think about how miserable Evan has been over the last few months, then it feels like we have very little to lose and a whole lot to gain.

So, the plan is to continue the Avastin treatments (every four weeks) for the next three months and do another MRI in September.

The main side-effect we have to worry about with Avastin is that, with prolonged use, it causes increased blood pressure which Evan already started having problems with about two months ago. They started him on blood pressure medication, and have been steadily increasing the dose, but his blood pressure still hasn't dropped back to a normal range yet. Hopefully, they'll be able to get that under control soon.

Luckily, we haven't had any problems with blood clots since our little scare a few months ago. Lately, we've actually had trouble with his blood getting too thin instead of too thick. It just seems to go back and forth - which is just annoying!

Anyway, that's about it, in a nutshell. As always, we thank you more than we can say for your continued prayers on our behalf. I am absolutely certain that's the reason we got such a pleasant surprise today! We love you all!

Gratefully yours,
Margot

March 27, 2009

2009-03-27T16:00:00.000-06:00

A LITTLE COMPLICATION:

O.K., so I don’t want to make a big deal out of this, but I always get in trouble with people when they find out something happened that I didn’t tell them about. So in the interest of full disclosure, we had a little scare yesterday.

Evan woke up with a very sore arm and a painful lump on the inside of his right arm, just below the crease of his elbow. The lump was about an inch and a half long and seemed to follow the path of the most prominent vein on his arm.

We got in to see Evan’s primary care doctor around 11:00 am. Dr. Riessen was quite sure that it was either a blood clot or some kind of infection. They tested Evan’s blood and sure enough, it was really thick. Evan’s blood has been very stable for the last several months, so this just came out of nowhere. Evan’s INR (which measures the viscosity of the blood) has been hovering between 2.4 and 2.7 for months, which is perfect! But yesterday it had dropped to 1.2 - way too thick!

So they sent us over to the hospital for an ultrasound, which took forever!!! Finally, around 3:00 pm, they confirmed that Evan did indeed have a blood clot in his arm. They decided it wasn’t bad enough to require hospitalization (which Evan was happy about), but I’ll be giving him shots twice a day for the next four days in addition to the blood thinner he takes orally. We’ll go back in on Monday to make sure Evan’s INR is back up where it needs to be, and hopefully that will be it.

I have to admit, I was pretty rattled yesterday! It seems like every time I start to think life is going to calm down a little bit, something happens to remind me how fast life can change. It’s a good thing to remember, but a little disturbing at the same time. I’m doing much better today, and Evan was as calm as can be through the whole thing. “No big deal,” he says.

Thanks for listening!
Margot

March 23, 2009

2009-03-26T21:26:00.000-06:00

GREAT NEWS!

Dear Friends and Family,

We got great news today! First of all, the tumor actually shrunk a little bit. Three months ago, the tumor measured 2.0 x 1.1 x 0.9 cm. Today it measured 1.9 x 1.0 x 0.7 cm. That probably doesn’t sound like much, but when you realize how resistant to treatment this type of cancer normally is, it really is a miracle that the tumor has been reduced as much as it has and is still shrinking after more than a year on the same chemo drug. The doctor was amazed!

Also, the tumor was not nearly as bright and white on the MRI image today as it was three months ago. This would suggest that the drug (Avastin) which Evan receives with his chemo is working to cut off the blood supply to the tumor. In other words, the cancer cells are less active and unable to reproduce as easily. Again, the doctor was impressed!

And finally - the best news of all is that starting next week Evan will have three weeks between treatments instead of two. The dose will stay the same, but Evan will have an extra week to recover. I’m really hoping that will go a long way to improve his quality of life.

So that’s the plan for the next three months. We’ll go back for another MRI at the end of June and see how the tumor reacts to the reduction in treatment. Thanks again for all your prayers and support! We appreciate you all so much!

With love and gratitude,
Margot

March 17, 2009

2009-03-18T08:22:00.000-06:00

MRI Next Week!

Dear Friends & Family,

I know it’s been ages since I wrote last - sorry about that! We haven’t had anything noteworthy to report though, so you haven’t missed anything. I guess we’ve been operating under the “no news is good news” rule.

Evan has continued receiving chemo treatments every other week, with the usual crummy side-effects. Unfortunately, the nausea has been hitting him harder and faster these days. He starts feeling sick as soon as they start the I.V. now, and he rarely makes it through the treatment without getting sick. It was a little better when he could at least make it home before it got really bad, but those days are over.

Evan has one more chemo treatment tomorrow (Wednesday), before his MRI which is scheduled for next Monday (March 23^rd). Unless Dr. Choucair voices strong objections on Monday, we’ve decided it’s time for a break. Depending on what the doctor recommends, we are planning to either stop treatment for a few months or, at the very least, move to some type of once-a-month maintenance chemo.

Hopefully, all the chemo Evan has received up to this point will have been enough to put the tumor into a dormant stage and keep it there. Our biggest hope is that Evan will be able to live with little or no chemo, and that the tumor will not start growing again for a very long time!

We are so grateful for all your prayers and support. We can never adequately express how much your love and friendship means to us. We feel so blessed! Thanks again, and we’ll let you know how things go next week.

Love,
Margot

January 5, 2009

2009-01-05T20:31:00.000-07:00

HAPPY NEW YEAR!

We hope everyone had a happy holiday! Ours was wonderful. We had two whole weeks that were 100% carpool, homework, and medical appointment free! It was nothing short of heavenly!

Today, it was back to business-as-usual though. The kids went back to school, and it was MRI day for Evan. He had the scan first thing this morning and we met with the neuro-oncologist this afternoon to get the results. We got good news and great news!

The good news is that the tumor showed no sign of new growth. It didn't shrink, but as long as it's not growing - it's good news!

The great news is that if the next MRI (in March) comes back again with no new growth, the doctor is planning to take Evan off the rigorous treatment schedule and put him on what they call "maintenance chemo." The chemo drug and dose will remain the same, but he will only have to go in for treatment once every three or four weeks!

In March, Evan will have been on the heavy treatment schedule for a full year. The doctor is hopeful that this will have been enough time to put the tumor into a dormant stage, and that it will remain dormant even on the lighter treatment schedule.

The thought of having three weeks between treatments, instead of just one, was enough to put a huge smile on our faces! It made us feel like we might actually be on the home stretch with this thing!

Thanks for all your prayers and support. This would be so much harder without all of you behind us!

Love,
Margot

December 13, 2008

2008-12-08T20:08:00.000-07:00

MERRY CHRISTMAS!

Dear Friends & Family,

We hope this holiday season finds you all healthy and happy! We send each of you our warmest wishes and most heartfelt thanks for all the love and support you have extended to our family throughout this year!

As soon as the Christmas season began, we started remembering all of the amazing acts of kindness that we received during the Christmas season last year. We still don't feel like we've said thank you enough for all the sacrifice and generosity that we received. We are still blown away thinking about it 12 months later. To all of you who did anything for us last Christmas, or since, (big or small, in person or in secret) thank you, thank you, thank you - again!

Thankfully, we are in a much better place this year, and hoping to be more on the giving end rather than the receiving end of Christmas kindness this year!

EVAN - is still plugging along with chemo treatments every other week. The nausea has been a lot worse in the last few months, but he's determined to hang in there until January. His next MRI is scheduled for January 5th, and after that I think we will strongly consider switching to a three-week schedule.

We had a little trouble with his blood thinning medication over the last 6 weeks and that has been frustrating, but as of last week it seems to have stabilized. Basically, the Coumidin wasn't keeping his blood thin enough, and he was at risk for blood clots again. Week after week they would raise the dose, but we'd come back a week later and there would be no improvement. Finally, after 6 weeks of raising the dose, it thinned to a safe range, phew! That's the kind of stuff that makes me crazy!

MARGOT - was released from the R.S. Presidency at church after three years, and is now having fun teaching the 8-year-old children in Primary. A dream job landed in her lap recently, doing part-time computer work from home for a marketing firm in Salt Lake City. It's as if it was custom made for our needs and circumstances - a huge blessing! And of course, she stays busy keeping track of doctor appointments, picking up prescriptions, and fighting with the insurance company!

RYAN - (age 13) is now taller than his mother! He has been extremely busy earning straight A's in 8th grade, playing flag football, serving as President of the Deacon's Quorum at church, playing the Trumpet in the Junior High School Band, and playing X-BOX whenever he gets the chance. In his spare time he loves teasing his sister!

LINDSAY - (age 6) loves Kindergarten, and learning to read! This year she learned to jump-rope, lost her first two teeth, and went horseback riding for her birthday. She loves taking gymnastics, playing with her friends, and singing her own made-up songs. In her spare time she enjoys annoying her brother!

As we celebrate the birth of our Savior, Jesus Christ, we give thanks for the countless blessings we receive everyday because of his life, his teachings, his sacrifice, and his love for us. We wish you all a Merry Christmas and a Happy New Year!

With much love and gratitude,
Evan, Margot, Ryan, & Lindsay Gardiner

Here's what we've been up to, since I wrote last:

TRIP TO SOUTHERN UTAH!

In October we got to take a little family trip to Southern Utah. The kids had three days off from school and we were in desperate need of a change in scenery (thanks Mom & Dad, for making it possible!). We stayed at a great little resort in Brian Head and had a wonderful time! The kids spent lots of time in the hotel pool, we went for walks, took a day trip to Bryce Canyon, went horseback riding, celebrated two birthdays, and just generally relaxed and hung out together. Here are some pictures from our fun weekend!

Cedar Breaks National Monument was breathtaking at sunset!

On the second day of our trip, we celebrated Lindsay's 6th Birthday! She got to blow out her candles on a "birthday muffin" and open her presents in our hotel room.

Later that day, we went horseback riding at Bryce Canyon. Evan wasn't feeling well enough to go with us, but at the end of the day he had the last laugh - watching the rest of us walk around bow-legged with sore tail-bones.

During one of our walks, we found a great pond for throwing rocks!

Evan & Ryan had fun showing off their muscles.

Lindsay had fun showing off for the camera!

On the last day of our trip, we celebrated Evan's 40th birthday! A great milestone!

It was a great get-away! We can't wait to do it again!

HALLOWEEN!

Halloween was a big hit at our house this year! Lindsay was a "girl-pirate," as she called it. As for Ryan, he just wanted to be creepy - I think he succeeded!

October 15, 2008

2008-10-15T21:00:00.000-06:00

Latest MRI Results!

Hi Everyone!

We got some unexpected good news today! Evan had his MRI yesterday and it looks like the tumor has shrunk again!

I have to make one disclaimer though. Our doctor got called away on a family emergency and won’t be back for a few days, so I don’t have personal confirmation from him about this. However, we were too impatient to wait through the weekend to get the results - so we talked Evan’s primary care physician into printing out the radiologist’s MRI report, so we could read it ourselves. Since I knew that many of you were anxious to hear something as well, I thought I would go ahead and tell you what it looks like to us.

Two months ago, the tumor measured 2.3 x 1.3 x 1.9

Yesterday, the tumor measured 2.3 x 1.3 x 1.4

If my math skills aren’t too rusty, that’s roughly a 25% reduction (in mass) since the last MRI.

When Evan was originally diagnosed, 14 months ago, the tumor measured 4.4 x 3.9 x 2.7

So basically, from its original size, the tumor has now been reduced by 90%!!!

Considering how aggressive this form of cancer is, these results are no small miracle! They are surely the product of all your prayers!!! Thank you so much for keeping us in your thoughts, through all this time!

We had been told that this chemo would be most effective during the first few months of treatment and then just level off. So, when the last MRI came back with no change, we thought maybe we had seen the last reduction we would ever get. We had even made plans to take a break from treatment if this MRI came back again with no change. Obviously, as Evan put it, “We can’t quit now!” We definitely needed some strong motivation to face another four months of this, and I think we got it!

As a side note - in my August update, I mentioned that we were thinking about switching to a 3 week chemo schedule instead of the every-other-week schedule we were already on. But then we discovered that Evan’s chemo dose would have to increase if we switched. He would have longer to recover, but the higher dose would probably make him sicker in the short term. We decided that wasn’t an option, so we are still on the every-other-week schedule (just in case anyone was confused).

Thanks again for all your support! We’ll keep you posted!

With love and gratitude,

Margot

Thursday's Hero

2008-09-22T09:53:00.001-06:00

September 22, 2008

We had one of the most inspiring and memorable experiences of our lives last Thursday! We got to meet the BYU Football Team - coaches, staff, and players! It was truly a once-in-a-lifetime opportunity that we will never forget!

To make a long story short - every Thursday, the BYU Football Team invites someone from the community to attend their Thursday afternoon practice, and be recognized for showing courage in the face of adversity. The program is called "Thursday's Heroes."

Imagine our surprise when we discovered last week that our good friend and neighbor, John Cannon, had nominated Evan, and that Evan had been selected! So last Thursday, our family, and the Cannon family, made the trip to Provo for an amazing afternoon!

As you can see, our visit started with some family photos in front of a huge mural of Lavell Edwards Stadium - and it just kept getting better and better from there. Check out the following photos for highlights from our visit.

Tour of the new Student Athlete Building

2008-09-22T02:01:00.000-06:00

One of the first things we saw, as we started our tour of the football facilities, was a large board with pictures of each returned missionary on the team with an arrow pointing to the area on the map where they served. Very cool to see!

The team meeting room is a large auditorium. The seats were wide with lots of leg room for those big guys. We got to watch an awesome highlights video that you can't see anywhere else. It was really inspiring! The walls are covered with cardboard "war shields" designed by each player. Before each game, two or three players are chosen to explain the significance of the words and symbols on their particular shield. (As you can see in the back of the auditorium, we brought our own supply of wild-warriors, Lindsay and her best buddy, Lisa Cannon.)

At the front of the team meeting room, there is a large granite rock. After every game, the team members who made big plays get to chisel away some of the rock in the oval area around the 'Y'. Eventually the 'Y' will be raised. Each player has their own personally decorated chisel.

Evan was drawn to the New England Patriots helmet on the wall where all the BYU players who have gone on to play for the NFL are listed. I gravitated more towards the 49'ers helmet myself.

Steve Young's BYU Jersey.

Ty Detmer's BYU Jersey.

The Locker Room

2008-09-22T01:47:00.001-06:00

In the stairwell leading to the Locker Room, the wall is covered with pictures and profiles of all the people who have been honored as a Thursday's Hero. Lindsay found ours right away.

Also in the stairwell leading to the locker room, there is a plaque with the team's mission statement and goals for the season. Very impressive!

The Locker Room was huge! It ran the whole length of the building. It was surprisingly clean! Their moms would be proud!

The man on the right is Cort Trejo. He was the one who arranged our visit and gave us the great tour of the facility. He was awesome!

Meeting LaVell Edwards!

2008-09-22T00:42:00.000-06:00

As we headed out the locker room doors to the practice field, we couldn't believe who was standing right in front of us! It was none other than LaVell Edwards. By sheer luck, he happened to be there that day to watch practice. Several members of the staff told us later what an extremely rare occurrence this was. He came right over to Evan, and said, "You must be Thursday's Hero." He talked with Evan as well as our family and friends for quite a while. He was so great! Meeting him was a huge, huge thrill!

He was also kind enough to sign Ryan's BYU T-Shirt.

I'm thinking this would make a great Christmas Card Photo - "Merry Christmas from Evan, Margot, Ryan, Lindsay, and LaVell!" (Notice that Lindsay is giving us her "very scary" BYU Cougar growl, with claws and teeth.)

Eventually, we did actually watch the team practice.

Team Presentation for Evan

2008-09-21T23:52:00.000-06:00

When the team was done with practice, we were invited out onto the field and Coach Bronco Mendenhall introduced Evan to the team.

The team had a wonderful presentation for Evan. They honored him for his courage in facing this difficult challenge, and they made him an honorary member of the team. They gave him his own team flag, that has signatures from every member of the team on it. They also gave him a beautiful team coin. Every coach and player has one and they carry it with them at all times. It has the team's mission statement engraved on the back, and this year's team motto "Quest for Perfection" on the front. It's really something to see!

As a new member of the team, Evan was asked to add his signature to the official team flag. This flag is carried onto the field by one of the players before every game as the team enters the stadium. This flag has the signature of every players, as well as each person who has been honored as a "Thursday's Hero." What an honor!

Towards the end of the presentation, Evan got to say a few words to the team. He expressed our great appreciation for their kindness, as well as our gratitude for their example and the integrity with which they represent the University and their fans, and he wished them continued success in the upcoming season. It was pretty cool to watch all those big strong players listening so intently as Evan spoke. Evan did a great job!

And finally, in one of the most moving moments of the day, the team asked Evan to lead them in their end-of-practice cheer. All the players gathered around him, Evan called out "1-2-3," and the whole team yelled "Go Cougars!" It was awesome! I get chills everytime I think about it.

Shaking Hands with the Players

2008-09-21T23:39:00.001-06:00

Each and every player shook hands with Evan, Ryan, Lindsay, and myself as they left the practice field. Many were even kind enough to kneel down and talk with Lindsay. It was unbelievably cool!

Visiting with Coach & Quarterback!

2008-09-21T23:00:00.000-06:00

Coach Mendenhall was incredibly kind, and so generous with his time. He probably spent close to half an hour talking with Evan, each member of our family, and the Cannons. He had an amazing presence, and showed such sincere interest in Evan and our family. A truly great man!

Our final visit was with Quarterback Max Hall. He was also incredibly kind and friendly, and (like his Coach) very generous with his time.

By the end of our visit, Ryan had collected signatures from LaVell Edwards, Bronco Mendenhall, and Max Hall. It doesn't get better than that!

On Saturday, Evan and Ryan were able to attend the BYU vs. Wyoming game. Ryan is wearing the practice jersey of Fui Vakapuna who literally gave Ryan the shirt off his back during our visit with the team. What a great way to cap off this amazing week!

August 20, 2008

2008-08-21T01:33:00.000-06:00

MRI Results!

Hi Everyone,

Well, it was a ridiculously long day. Evan went through the whole MRI process this morning (2 hours from start to finish). But when we got to our appointment with Dr. Choucair and he started to pull up Evan’s pictures on the computer, we discovered there was a problem with many of the images. Evidently, the MRI machine was having some technical difficulties this morning.

So, after we finished our meeting with Dr. Choucair we had to go back over to radiology and get a good portion of the scans done again. What a pain! At least I had a good book to read, but Evan was not particularly happy about it. The doctor will call us after he reviews the new pictures, but it probably won’t be until tomorrow.

From the images that he could see, Dr. Choucair thought the tumor looked pretty much the same as it did 8 weeks ago. No change one way or the other. There was one corner of the tumor that he thought might be slightly enhanced, but he said it was probably just the poor quality of the image that made it look that way. In any case, we won’t have definitive results until tomorrow.

Evan and I both had a feeling that the tumor would stay the same this time, so it didn’t feel like a huge shock or surprise to us. And, as weird as it might sound, it actually came as somewhat of a relief. If the tumor had shrunk again, I know Evan would have been determined to push on with the treatment schedule and maintain the brutal pace. But now that the benefits of this chemo seem to be leveling off, and after hearing how hard the last 2 months have been on Evan (physically & emotionally), Dr. Choucair thought it would be appropriate to ease off a little, and go to a 3 week chemo schedule instead of the every-other-week treatments he’s been doing. I really just want Evan to feel better, and have more good days - so that was music to my ears!

Evan will go ahead with the scheduled chemo next Tuesday, but then he’ll have three weeks until the next one. Hopefully, that will give him more time to recover from each dose, and give him a full week of feeling better (instead of just a day or two) before his next treatment. The doctor would really like Evan to stay on chemo until next March, even if the tumor stays the same. And I don’t know how Evan would be able to endure 7 more months of this without making the treatment schedule a little bit easier. Hopefully the three-week cycle will make that possible. (Next March would mark a full year on this chemo, and that would increase the odds of keeping the tumor in a dormant stage after we stop treatment.)

On a happier note – this Sunday, Evan and I will celebrate our 17th Wedding Anniversary! Last year, we spent our anniversary at University Hospital and Evan got a brain biopsy as an anniversary gift - really awful! This year looks to be a whole lot better! Thanks to the unbelievable kindness and generosity from some of our closest and dearest friends, we will be spending three days and two nights at The Homestead Resort in Midway, Utah. We can hardly wait! We have the best friends in the whole world!!! Thanks guys!!!

On another happy note – several of you have asked how our kids are doing, so I thought I’d give a quick update on them too. Ryan turned 13 in May and had an incredibly awesome summer. It included 2 Scout Camps (which he loved) and a lawn mowing business (which kept him busy and made him rich). The second scout camp was actually a leadership training camp, and I swear he came home two years older and two inches taller. He said it was (quote), “The best week of my life, Mom!” He has grown and matured so much in the last year. I’m really proud of him! He started 8th grade this week, and was recently called to be the President of the Deacon’s Quorum at church. Obviously, Ryan is old enough to understand everything that is happening to Evan and the potential implications of it. But somehow he has been coping remarkably well. Both he and I have been meeting with a fabulous counselor every week or two throughout the last year, and I know that has helped tremendously.

As for Lindsay, she is starting kindergarten next Monday!!! She is feeling quite grown-up about the whole thing! She’s got her Tinker-Bell backpack (I had to talk her out of the Hannah Montana one) and she is rearing to go! She is so excited and so ready, (she turns 6 in October), that I can’t feel too sad about it. It might hit me on Monday though, we’ll see. She has been playing with friends, taking swimming lessons, and enjoying visits from Grandma Gardiner, Grandma & Grandpa Madsen, as well as aunts, uncles, and cousins from both sides of the family at various times throughout the summer. Also, she is absolutely in love with her Grandma Gardiner’s new dog. She has already made an invitation for the dog to come to her birthday party, it’s pretty cute. As far as Evan being sick, we can tell by the questions she asks that, on some level, she understands what’s happening and what’s at stake. But so far, she’s been pretty matter-of-fact about it and seems to be satisfied with the answers we’ve given. Once she has an acceptable answer to her question or concern, she just moves on. She’s like, “O.K. that sounds good. When’s lunch?” Besides, she loves having her Daddy around all day. She finally has someone at home who will play Candyland and Chutes-and-Ladders with her.

So that’s about it. (Probably more than you wanted to know or read)! We’ll continue to keep you posted. Thanks for all your prayers, and kind thoughts. We’ll talk to you soon.

Love,
Margot

August 7, 2008

2008-08-09T00:13:00.000-06:00

The One-Year Mark!

Dear Friends and Family,

It might be hard to believe, but today marks one full year since Evan’s diagnosis. It was August 7th, 2007, when I got the phone call that turned our whole world upside down. Thinking about that day has brought back a flood of memories and emotions for me.

We had been waiting anxiously for the results from the MRI which Evan had received a few days earlier. I had called the doctor’s office once already that morning hoping to get the results from the nurse, but was told the doctor wanted to give me the results himself. That was my first clue that they had found something wrong. It was an agonizing hour before the doctor called me back.

When the call finally came, I shut my bedroom door and sat down on the floor as the doctor broke the news. A million thoughts started racing through my head, so I grabbed some paper and a pen to help me concentrate. I tried to stay focused by writing down the words and phrases I was hearing. I wrote, “Malignant brain tumor,” “Center of the brain,” “Size of a walnut,” and “Find a neurosurgeon and oncologist, ASAP.” When I hung up the phone, I just stared at those words in disbelief. It felt like we had just entered someone else's life.

During the next two weeks we added several more scary words to that piece of paper. We heard words like, "Inoperable," "Terminal Cancer," “Glioblastoma Multiforme (GBM for short),” "Stage-4," and “No Cure.” It was overwhelming to say the least – especially all the statistics that were thrown at us in terms of life expectancy. Every new piece of information felt like a punch in the stomach.

We were told that the average life expectancy for someone with a Stage-4 GBM is 11 months. At that time, watching Evan’s mental ability deteriorate so quickly, I honestly did not know whether he would still be here today. But here we are, 12 months later, and I’m happy to say Evan has “beat the odds!” For someone with this type of cancer, being a one-year survivor is a huge accomplishment!

Evan pretty much feels crummy all the time now, and he’s been extremely tired the last two weeks. But his mental ability is ten times better than it was a year ago, and he’s still willing to fight and endure the treatments. For that, I am grateful and so proud of him.

We also want to express our deep appreciation to everyone who has helped us during the last year. We are so grateful and so humbled by the endless acts of kindness we have received from family, friends, doctors, and nurses alike. In spite of all the sadness and difficulty, we have never been more blessed or felt more loved than we have in the past year. Thank you, Thank you, Thank you, so, so much!!!

Evan’s next MRI will be on Wednesday, August 20th. We’ll let you know how it goes.

With love and gratitude,
Margot

June 23, 2008

2008-06-24T01:19:00.000-06:00

GOOD NEWS and
NOT-SO-GOOD NEWS

Hi Everyone,

Well, it was a long day – and a day of mixed emotions. The good news is that the tumor shrunk a little bit more. Not the dramatic results we got last time, but some improvement nonetheless. Just from looking at the films, our doctor said his best guess was a 20-30% reduction. However, the radiologist’s report and exact measurements were not ready in time for our appointment, and we thought his estimate might be a little on the generous side.

On the downside – when I asked the doctor about giving Evan a break from chemotherapy if the next MRI (or two) showed improvement, he said that he would not recommend it. He said that if Evan’s side-effects got worse, we could consider changing the treatment schedule to receive chemo every three weeks instead of every two. But after reminding us that Evan’s cancer is one of the most aggressive forms of cancer there is, he encouraged us to keep doing what we’re doing, for as long as we can possibly stand it. That did not give us much to look forward to.

At the risk of sounding incredibly ungrateful, it’s becoming really hard to get excited about positive MRI results when they don’t translate into any form of relief or improvement in the current, day-to-day challenges of treatment. I guess this is where we’re supposed to stop looking for immediate pay-offs, and start exercising faith in long-term results. (Such an annoying fact of life, isn’t it?).

So basically, Evan will start another 8 weeks of treatment next Tuesday, and get another MRI done at the end of August. At that point, he will have completed 6 months of this particular chemo, and a full year of treatments altogether. I honestly don’t know how he keeps going. His strength and endurance has been truly amazing!

We thank you so much for your prayers and fasting over the weekend, as well as the many messages of hope and encouragement that we have received. They boost our spirits and keep us going! We are so grateful for all of you!

Love,
Margot

June 18, 2008

2008-06-19T00:01:00.000-06:00

June 2008 Update

Hi Everyone,

Sorry I haven’t written in a while. The last two months have been relatively uneventful, so I haven’t had much to report.

Evan has continued to receive chemotherapy treatments every other week, and he hasn’t had any major complications since I wrote last. But with each additional treatment, it seems to take him a little bit longer to recover. In the beginning he would start feeling better within 3 or 4 days. Now, it takes a good 8 to 10 days before he feels like doing much again. Basically, he starts to feel better just in time for the next treatment. After 10 months of chemo, the cumulative effect is definitely taking its toll.

On the bright side Evan looks great! The visible signs of his early treatment have faded a lot over the past few months. His hair has grown back and a lot of the swelling in his face and upper body has gone down. He looks much more like himself these days. Now, if only he could feel as good as he looks!

Evan’s next MRI is scheduled for this coming Monday, June 23rd, at 11:30 am. We’re hoping the news will be good enough for the doctors to start talking about giving him a break from treatment sometime soon. The man from Colorado, whose treatment I’ve been following online, was able to stop chemotherapy after he had 3 good MRI’s in a row, showing no new tumor growth. He’s been off treatment for 8 months now, with no signs of new growth. We are desperately hoping for similar success.

Our family has planned a special fast for Evan this Sunday, before the MRI. If anyone else would like to join us we would be so grateful. We appreciate all your prayers and support so much! Thank you, Thank you, Thank you!!!

Love,
Margot

April 30, 2008

2008-04-30T18:49:00.000-06:00

GREAT NEWS!!!

Hi Everyone,

We got GREAT news today!!! Evan’s tumor shrunk more than 50% since his last MRI. It’s less than half the size it was just 8 weeks ago! It’s even smaller now than it was after radiation back in November. In February the tumor measured 3.4 cm x 2.6 cm. Today it measured roughly 1.5 x 1 cm. Even our doctor was pleasantly surprised by such impressive results. He said that this level of improvement is most likely the result of faith and prayer, because medical science can’t explain it and would not have predicted it!

We wholeheartedly agree with that! Without a doubt, we know we have all of you to thank for it! Thank you so much for all of your prayers for Evan and our family! They paid off in a big way today, and we are so grateful!

Since the tumor is obviously responding well to this chemotherapy, we’ll just keep doing what we’re doing for the next two months and check it again at the end of June.

It’s going to be so much easier to live with all the side-effects now that we know it will bring some significant benefits! After the last MRI in March, when we found out the tumor had grown back to almost its original size, I felt like we had endured 7 long months of treatment with little or nothing to show for it. When the new chemo turned out to be so miserable, we really started asking ourselves, “What the heck are we doing all this for?” I don’t know how much longer we could have maintained the strength and motivation to keep fighting without seeing some really positive results today. We walked into the doctor’s office prepared for the worst, and walked out with a miracle! (We practically skipped all the way to the car!) It was the best day we’ve had in a very long time!!!

We love you all!

Love,
Margot & Evan

April 23, 2008

2008-04-23T10:56:00.000-06:00

4th Chemo Treatment

Dear Family & Friends,

Evan had his fourth treatment on the new chemo yesterday. This one doesn’t seem to be quite as bad, or maybe we’re just finally learning how to keep him drugged enough to sleep through the worst of it. I think we were too conservative with the drugs at first. Now he starts taking the full dose of both anti-nausea drugs as soon as we get home, before the nausea even starts. There’s definitely a learning curve with all this.

Unfortunately, the treatments wreak such havoc on his digestive system, and cause so much pain and stiffness with his bones and joints that he still doesn’t feel good even after the nausea has subsided. There’s just no such thing as a good day on this treatment. In spite of it all, he’s been handling it as well as anybody could. He doesn’t complain and he just seems willing to take whatever this thing has to throw at him.

We had a bit of a scare three weeks ago, a few days after his second treatment, when I noticed that the whites of his eyes were turning yellow. The blood test that checks his liver function had been a little high the previous week, but the yellowing eyes suggested that something more serious was happening. When they re-checked the blood they discovered his liver function had suddenly gone through the roof. The measurement is supposed to stay between 0 and 45, and Evan’s was 217.

To make a long story short, they decided it probably wasn’t the chemo that was causing the liver damage but the new blood thinner that Evan had started taking. They had changed his blood thinner from a pill (Coumadin) to a daily shot (Fragmin) because the shots keep the blood more stable than the pills, and the new chemo can cause the thickness of the blood to fluctuate more than the old chemo. However, the new blood thinner can cause liver problems in a small percentage of patients. Evidently, Evan is one of those lucky few! So, he’s back on the Coumadin, and the liver function is doing better.

So now that Evan’s had his fourth chemo treatment, he’s ready for the next MRI. It’s scheduled for next Wednesday (April 30th) at 9:00 am. We’ll meet with Dr. Choucair at 11:30 am to get the results. If the tumor has shrunk or stayed the same, then we’ll continue the current treatment for another 8 weeks. If the tumor has grown, then we’ll have some tough decisions to make about what to do next. There aren’t many treatment options left, and they all come with huge risk factors.

We’ve looked into a few experimental treatments that may be approved for human trials later this year, but in most cases we would have to submit a tissue sample in order to be considered for the trials. Since the surgeon was not able to safely remove extra tissue from Evan’s tumor when he had his biopsy last August, it would be difficult for Evan to qualify as a potential candidate.

Anyway, that’s the latest. I’ll write again next week to let you know about the MRI results. We send each of you our love and gratitude for all your support. Even on the worst of days we feel so blessed, just because we know you’re there and praying for us. Thank you so much!!!

Love,
Margot

March 25, 2008

2008-03-25T23:59:00.000-06:00

New Chemo Treatments

Dear Friends & Family,

I wanted to let everyone know how Evan was doing on the new chemotherapy. He had his first dose two weeks ago (Tuesday, March 11th), and his second dose today (Tuesday, March 25th).

The first treatment took forever because they administer the first dose very slowly, just in case you have a strong reaction to it. From start to finish, Evan was there for about 5 hours. It made him extremely tired and nauseated for about three days afterward. He pretty much slept around the clock those first few days. He has felt a little better since then, but nowhere near as good as he felt on the old chemo.

We had hoped that the stiffness and soreness in Evan’s joints and muscles might improve a little bit on the new chemo, but no such luck. It actually got worse! Evidently, because the new chemo drug wreaks havoc on the white blood cells, at the end of each chemo session they have to give him a dose of another drug that boosts the production of white blood cells in his bone marrow. And wouldn’t you know it, this drug causes bone pain! Over the last few days he’s tried Advil, 800 mg Motrin, and finally Lortab, but nothing has worked to ease the pain.

Today he had his second chemo dose. It went faster this time (only 3 hours), but the nausea hit him a lot faster too. Last time, he didn’t start feeling sick until early the next morning, but this time he was pale and miserable within about 45 minutes after we got home. It’s a lot more intense this time too. (AARGH!!!)

He’s finally resting now, so I thought I’d come down and vent my frustration on the computer. It’s so hard to see him like this, and to be so completely powerless to make it better or easier. It’s infuriating and depressing all at the same time.

On the receptionist’s desk at the chemo center, she has this beautifully framed plaque that reads, “Cancer Sucks!” I’m resisting the urge to go paint that phrase in big giant letters across my garage door right now!

Thanks for listening, and thanks for your prayers, we need them more than ever right now!

Love,
Margot

March 3, 2008

2008-03-04T09:57:00.000-07:00

Latest MRI Results

Dear Family and Friends,

This morning Evan had the MRI we’ve been waiting anxiously for, and we met with his Oncologist this afternoon to get the results. I’m afraid we didn’t get the news we were hoping for. It turns out the tumor has started growing again.

The easiest way for me to explain how the tumor has changed is just to give you the measurements:
Last August, the tumor measured 3.6 X 2.3 cm.
In November (1 month after radiation), it measured 3.2 X 2.3 cm.
Today, (after 3 months of chemo), it measured 3.45 X 2.6 cm.

Basically, this means that the type of chemo Evan has been taking is not working and we need to try a different one. He’ll be starting the new chemo sometime this week. The technical term for the new drug is Irinotecan (don’t ask me how to pronounce it). I googled it this evening, and was happy to discover that it’s commonly referred to as Camptosar or CPT-11. (That will be much easier to pronounce!)

This type of chemo is administered through an I.V. once every two weeks, and each dose takes about 2 hours to administer. Evan will also start receiving another new drug called Avastin. Evidently, recent studies show that when a patient takes this drug in addition to the chemo they get better results than when they take the chemo by itself. The Avastin will be administered through the same I.V. as the chemo. I guess the “carefree” days of just popping a pill every night are over, but at least we won’t have to drive to Salt Lake all the time. Evan will be able to receive the treatments right here in American Fork.

Another change is that Evan will get an MRI every 8 weeks from now on, instead of every 12. It made me feel better to know that the doctors will be keeping a closer eye on things. With the type of cancer Evan has, if growth goes unchecked for too long it starts to grow with increasing speed. So, the more often they check things out, the safer Evan will be. Also, it will just be nice for us emotionally to find out what the tumor is doing on a more frequent basis. Waiting three months between MRI’s has been really hard!

Although this definitely felt like a setback, it’s not necessarily a big one. We knew this would be a roller-coaster, with plenty of ups and downs, and this is most likely just a temporary down spot. Another high point could be waiting just around the corner.

I’ve been following the story of another man (in Colorado) who is the same age, has the same type of cancer, and has received the same drugs and treatments as Evan. His wife posts her husband’s updates on a website every month or so (sound familiar?). He was diagnosed 15 months before Evan was, so it’s been like having a crystal ball to see some of the things that could lie ahead for us. After several months on the Temodar, his tumor started growing back and he had switch to the new drugs too. The new treatment has been working fine and there’s been no sign of new growth for many months. So far, our journey has been very similar to theirs in many ways – so I’m hopeful that we’ll be able to have similar success with the new drugs.

As far as how Evan is feeling these days – he’s finally seeing some improvement with his eye, and his hair is making serious progress. He looks good! He’s had no problems with his speech, his energy has been good, and his short-term memory has been relatively good. The continuing problem has been extreme soreness and stiffness in his joints and muscles. It’s basically like he has serious arthritis. When he walks, climbs the stairs, or tries to get up from a sitting position he feels like he’s 80 years old. We had to take a break from physical therapy this month because it was just too painful for him.

Originally, the doctor thought this was just a temporary after-effect of the steroid. But it’s been getting worse instead of better for several months, and now the doctor thinks it has probably been caused by the Temodar. If that’s the case, switching to the new chemo could solve the problem. That would put a huge silver lining on the news we got today!

Well, I’ve been rambling on for a long time now. That’s probably way more information than you wanted to hear. I think it’s probably therapeutic for me to organize my thoughts and sort out my feelings when I write these letters, so thanks for indulging me. And as always, thanks for all your prayers and messages of love and concern!

I’ll try and let you know how Evan is feeling on the new treatments in a few weeks.

Love,
Margot

February 7, 2008

2008-02-07T22:36:00.000-07:00

February Update

Dear Family and Friends,

We had our monthly appointment with Evan’s Oncologist earlier this week, so I thought it would be a good time to send out an update. Overall, Evan is doing well. He didn’t have any new side effects on the higher dose of chemo during this last month, so that was great! We’ve noticed some gradual improvement with the swelling in his face and stomach, so we hope that continues. And the most exciting news is that Evan’s hair is finally starting to grow back in the areas where he received radiation (yeah!!!). He happily stopped shaving his head about two weeks ago, and is really looking forward to losing the “bald look.”

On the downside - although Evan has been off the steroid for more than a month now, he’s still dealing with many of its stubborn side-effects. The arthritis-like symptoms are still a big issue. Evan’s joints and muscles are continually stiff and sore. It makes physical therapy, as well as normal activities, difficult and sometimes painful. The doctor says this will eventually go away, but it might take a few more months.

Evan’s eye is still a problem as well. We met with the retina specialist again recently and even though Evan hasn’t noticed any improvement himself, the doctor said it looks much better than it did a month ago. So at least it’s headed in the right direction, but again it will probably take another month or two to heal completely. It’s always a waiting game!

Something else we are waiting anxiously for is Evan’s next MRI. He started his third cycle of chemotherapy this week and the next MRI will be at the end of this cycle. It’s scheduled for the morning of March 3rd. Later that afternoon, we’ll meet with the Oncologist and Radiation Oncologist to discuss the results. What we would love to hear is that the tumor has been reduced enough that Evan would qualify for one of the radiation surgeries that are out there. We know it’s a lot to hope for, but we also know that if it fits into God’s plan for us, then anything is possible.

As always, we express our deepest thanks for the many thoughts and prayers you continually send our way. I don’t know how we would make it through this experience if we weren’t surrounded by so much love and support. Thanks again!!!

Love,
Margot

January 5, 2008

2008-01-06T00:14:00.000-07:00

HAPPY NEW YEAR!

Dear Friends and Family,

Happy New Year!!! We hope you enjoyed the holidays. Our Christmas was an incredibly memorable one! It was an experience we will never forget! We were blessed with countless acts of loving service, as well as gifts of unbelievable kindness and generosity. Some of these gifts were given in person and others were given anonymously. It was truly overwhelming!

Thank you! Thank you! Thank you to all of you who brightened our days and lifted our spirits, in person or in secret, through little notes, cards, e-mails, gifts, or service. We appreciate it all so much, and it has made us anxious for the day when we’ll be able to pay it all forward and do for someone else what has been done for us. Until that day comes, I think we will feel incredibly unworthy and undeserving of so much love and attention. There is just no way to express how grateful and humbled we feel by it all. Thank you again!

We had our monthly appointment with Evan’s Oncologist last Wednesday, so we have a couple of new developments to report.

The best news is that Evan is finally off the nasty steroid (Decadron) that has caused so many problems. Yeah!!! We are very happy to be done with that drug! Some of the short-term memory problems started coming back as we got lower and lower on the dose, and it might get a little bit worse over the few months as the drug leaves his system completely. But right now, that seems like a small price to pay to get rid of the eye problems, the swelling in his face and upper body, and the joint and muscle pain.

In order to start rebuilding some the muscle tissue damaged by the Decadron, and improve the flexibility in his joints, Evan will be starting Physical Therapy next week. I am thrilled about this! I think it will be so good for him to get out and get some physical activity. I really hope it will help him feel a little better and a little stronger. He has his first session on Monday.

Evan finished the first cycle of Chemotherapy on Christmas Eve, and then had a week off before we met with the doctor. Since Evan’s white blood cell count remained so high during that first cycle, and since he didn’t get horribly sick, the doctor decided to increase the dose of chemo for the next cycle. Evan was on 160 mg/day in December. For January he’ll be taking 180 mg/day. If he continues to tolerate the chemo well, they will increase the dose again, to 200 mg/day, for February. The 200 mg/day would be the highest dose they could give.

This information came as a bit of a shock to us (we naively thought the 160 mg/day was the highest dose). We haven’t decided yet whether this was good news or bad news. If the higher dose does not make Evan horribly sick, and it can shrink the tumor faster, then it will be good news. If it makes him horribly sick and we have to go back down to the lower dose, then this will be a long miserable month, and from now on we’ll know that we’re fighting this battle without the strongest weapon available. To put it mildly, that would stink!

So – cross your fingers, and send out a few prayers that Evan will be able to tolerate the higher dose! His next MRI will be at the end of February, after he finishes the third cycle of chemo. Take care, and we’ll keep in touch!

Lots of love,
Margot

December 13, 2007

2007-12-13T22:16:00.000-07:00

Eye Appointment

Hi Everyone,

I’m afraid there’s not much to report after Evan’s appointment with the retina specialist on Tuesday. After two and a half hours of testing, he basically just confirmed what we already knew - that the fluid collecting behind Evan’s retina is coming from a leaking blood vessel. The only new information we got was that the problem is most likely being caused by the high doses of the anti-inflammatory steroid (Decadron) that Evan has been taking for the last four months.

The only good news about that is that Evan’s oncologist has been gradually lowering his dose of Decadron, and we’re hoping he will be off of it completely in about three weeks. The eye doctor expects Evan’s vision problem to go away on its own within a few months after he stops taking the medication. If not, the treatment would be some type of eye injections or a laser eye surgery.

We’re not too happy about having to wait for months to see if it goes away on its own. But evidently the treatment options are pretty major, and probably pretty expensive, so they don’t just jump into these procedures unless they absolutely have to. So, once again, the name of the game is “wait and see.” You would think we’d be used to that answer by now, but it doesn’t seem to be getting any easier.

Hopefully we’ll have better news the next time you hear from us. Until then, we hope you all have a wonderful Christmas!!!

Love,
Margot

December 9, 2007

2007-12-09T19:21:00.000-07:00

Our Trip to Southern California

Our first day at Disneyland!

Dear Friends and Family,

We hope you all had a happy Thanksgiving, and that you're enjoying the Christmas season! Thanks to all of you who sent messages to us while we were gone - it was fun to come home and find all your greetings waiting for us.

We had a great trip to Southern California. It was so nice to get away! Evan never felt very well, but he was a good sport and made the best of it. In all, we spent one day at SeaWorld and two days at Disneyland. Fortunately, we were able to space out the amusement park days so Evan and I could rest for a day or two in between. (Having fun was exhausting!)

On our "days off" we played on the beach, went to the movies, and took a few well-deserved naps. The best part of the trip was having my parents, my sister, and my brother and his family, there to share the first three days with us. We had Thanksgiving dinner with everyone on Thursday night, and spent Friday at Disneyland all together. It was great fun! (Thanks for making the trip down you guys!)

The big discovery for the week was that Lindsay (our 5 year-old) is a roller-coaster hound! The faster the better. Her favorite rides were Space Mountain in Disneyland, and Mulholland Madness in California Adventure. I think she went on each of them 4 or 5 times. She'd throw her hands in the air and start screaming as soon as the ride started moving. It was hilarious!

Ryan had a great time on the rides as well, but I think his favorite part was the motorized scooter we rented for Evan to get around on. Evan let him take it for a spin a few times, and Ryan thought that was the greatest thing ever. (If only they sold them in the souvenir shops.)

As far as Evan's health goes - the vacation ended almost as soon as we got home. Evan started taking chemotherapy again last Monday, as well as all the other drugs that go with it. Within just two or three days he started feeling more tired and a little queasy again. No fun! But the biggest annoyance has been with his vision.

Just prior to our trip, Evan started seeing little dark spots out of his right eye. At first they would come and go, but while we were in California one large dark spot appeared and has been there ever since. It makes the vision out of his right eye dark and blurry. It's driving him absolutely crazy.

We met with an Ophthalmologist on Friday and he found that fluid is collecting just behind Evan's retina. Now we have an appointment with a Retina Specialist this Tuesday to find out what they can do to treat it. (I didn't even know there was such a thing as a Retina Specialist!)

Anyway, we would sure appreciate your prayers that they will be able to treat and eliminate this problem for Evan. Out of everything he's had to go through and all the side-effects he's had to deal with, this has become, by far, the most frustrating issue for him. It's just one problem too many!

I'll let you know what we find out from the specialist on Tuesday. Thanks for all your thoughts and prayers!

Love,
Margot

2007 Photo Gallery

2007-11-20T23:00:00.002-07:00

Thanksgiving 2007

Thanksgiving with Evan's family. All his siblings were there!

November 2007
Evan with his brother Monte, and nephew Monte Birk Jr.

Halloween 2007
Ryan used Evan's radiation mask to make a very creepy Halloween costume. Lindsay went as Sleeping Beauty this year, with her friends Devi and Lane (a.k.a. Hannah Montana and the Ghost).

October 2007
Evan & Grandpa Madsen took Ryan to his first Priesthood Session of General Conference. Ryan turned 12 years-old in May.

September 26, 2007
Head Shaving Day! Our good friend and neighbor lightened the moment by bringing Evan a new Boston Red Sox cap. Evan's medication starts to cause swelling in his face.

May 2007
Ryan slides into home plate. (He was safe!)

May 2007
Lindsay's Ballet Recital.

May 2007
This was about the time when Evan started feeling really tired.

December 2006

November 20, 2007

2007-11-20T20:11:00.000-07:00

MRI Results

Hi Everyone,

Evan had his MRI this morning and then met with Evan’s Oncologist and Radiation Oncologist this afternoon. There was very little swelling around the tumor, so the images were very clear – thank goodness! I think we would have gone crazy if we had to wait for three more months till the next scan.

The tumor has been reduced by about 25-30%. This is good news, but not great news. I think we were hoping to hear something more like 50% or more. And I know Evan was hoping to hear 100%. But 30% is better than 10% or 20%, and it’s definitely better than no change at all, so we’ll take it!

The radiation continues to work on the tumor for several months after the last treatment, and the chemotherapy will continue to fight the cancer cells as well – so we’re hoping the tumor will continue shrinking, and that we’ll see additional reduction in his next MRI three months from now.

Thanks for all your support. We appreciate your thoughts and prayers more than we can say. We wish you all a wonderful Thanksgiving and we’ll be in touch after our trip.

Love,
Margot

P.S. I also wanted to let you know that my good friend Cheryl Wilde helped me set up a little family website, if you’d like to check it out. The address is www.mgardinergazette.blogspot.com.

It includes all my e-mails since Evan’s diagnosis, and I’ve posted a bunch of family photos there too. My computer had a nervous breakdown when I tried to send attachments to such a long list of recipients, so this will be easier to use in that way. I’ll still send out the e-mails, but from now on they’ll be posted on the website as well. Also, if there’s anyone who isn’t already on my e-mail list, they can just check the website from time to time and look for the latest updates. Take care, and we’ll talk to you soon.

November 19, 2007

2007-11-19T20:00:00.000-07:00

Evan's Break From Treatment

Dear Family & Friends,

It’s been a while – sorry for the long silence. Evan is hanging in there. It’s been four weeks since his last radiation treatment, and he’s been on a break from chemotherapy since then as well. We had hoped that he would be feeling a lot better by now, but the improvements have been fairly subtle.

The first two weeks after the end of radiation turned out to be the worst. He finally started experiencing the nausea that we’d been warned about (but thought we had avoided), and he was about as weak and tired and sore as he’s ever been. The last couple weeks have been a little better though. The nausea is gone now, and we’ve seen some mild improvements in his energy level. Also, his personality and sense of humor has started to come back lately. All good signs! The progress is slow, but we’re hoping it will continue even after he goes back on the chemo.

As for the blood clot concerns, they remain a constant issue but not a major threat. The cancer’s effect on the blood makes it difficult for the blood thinners to keep things stable, but he gets it checked every week (or twice a week when it starts doing crazy things) and the doctors adjust the Coumadin accordingly. It’s been a little annoying to deal with, but it’s probably a walk in the park compared to what people with diabetes have to go through, so I’m sure we’ll get used to it.

All in all, the break from treatment has been good. We’ve enjoyed having fewer doctor appointments, fewer medications to take, and Evan has been able to get out a little more too. Last weekend, Evan felt well enough to spend the better part of two whole days with his mom and siblings as we celebrated an early Thanksgiving. It was the first time Evan and his brothers and sisters had been all together in several years. Monte, and his family, came up from Arizona, and his sister, Joy, came out from North Carolina. Alan and Jan were already here in Utah. We had a great time, and really enjoyed seeing everybody.

This week we’re looking forward to our big trip to Southern California. We leave on Wednesday and won’t be back until Friday of the next week. It should be just what the doctor ordered, for all of us. We’re planning to have lots of fun and come back ready to face the next phase of treatment.

The other big event for this week is that Evan has his next MRI tomorrow (Tuesday). It will give us the first look at the tumor since he started treatment. If the images are clear, it should give us the first indications of how effective the radiation has been. The doctors have warned us that there is a possibility that the images won’t be clear since the radiation causes a lot of swelling around the tumor, and sometimes it takes more than four weeks for the inflammation to subside. But we’re crossing our fingers for clear pictures and good news! I’ll be sure to send out a quick e-mail tomorrow night and share the results with you before we leave town.

We hope this letter finds you all doing well, and we wish you a very Happy Thanksgiving!!! Thanks for all your prayers!

Love,
Margot

October 13, 2007

2007-10-13T21:56:00.000-06:00

4 Treatments Left!

Dear Family & Friends,

It’s been a little while since I wrote last, but as they say, “no news is good news.” Things were a little crazy last week after he was released from the hospital, trying to make adjustments to his blood thinning medication and get his blood flow stable. But we seem to have worked out the kinks now and he’s been stable for the last 5 days. So this week has been pretty uneventful, and that’s the way we like it.

The BIG NEWS is that Evan has just 4 treatments left. His last treatment will be next Thursday the 18th. We can hardly wait for this phase of the treatment to be over. He is just completely depleted of energy and strength. Except for the daily trip to radiation, he doesn’t want to go anywhere or do anything except rest.

We’re really hoping he starts to feel better during his one-month vacation from all the treatments. In fact we’re counting on it - we just cashed in all Evan’s frequent flier miles and got four airline tickets to Los Angeles. Some of our dearest and closest friends have a little one-bedroom condo right near the beach, south of Los Angeles, and have graciously offered to let us stay there for some serious rest and relaxation. We leave the day before Thanksgiving and the day after Evan’s next MRI. We hope it will be “just what the doctor ordered” for all of us!

As always, thank you all for your continued prayers on Evan’s behalf! We appreciate it so much!

Love,
Margot

October 1, 2007

2007-10-01T21:55:00.000-06:00

Home from the Hospital!

Hi Everyone,

Just a quick update to let you know Evan made it home from the hospital today (Monday). His blood wasn’t quite as thinned as they wanted it to be, but they said he could go home as long as I was willing to learn how to give him the shots he needs. He’ll only need the shots for two more days, and then he can maintain it with a different blood thinner (Coumadin) which he can take orally (thank goodness). Evan was really sick of being there, so we were relieved to find a way to get him out of there.

We were also happy to get Evan out of the hospital in time to keep his radiation appointment this morning, and also his appointment with the Neuro-Oncologist, Dr. Choucair, this afternoon. We haven’t met with Dr. Choucair since the biopsy, so we were pretty anxious to get his view on how Evan’s treatment was going. He thought Evan looked really good, and was happy with how the medications have improved Evan’s speech and memory. He said that the blood clots are extremely common with this type of cancer, but that the blood thinners should help prevent any further complications.

A heartfelt thank you to everyone who called, visited, or sent something to Evan in the hospital – that was so thoughtful! A huge thank you to my parents who put in long shifts at home with my kids and my laundry this weekend. And many thanks to everyone who said a few extra prayers for us this past week!

As of today, Evan has 13 radiation treatments left. If we don’t hit any more snags, his last treatment will be on October 18th. His next MRI is scheduled for November 20th.

Take care, and we’ll keep you posted.

Love,
Margot

September 28, 2007

2007-09-28T21:53:00.000-06:00

A Bump In The Road

Hi Everyone,

Well, we hit a little bump in the road yesterday. During our weekly meeting with Dr. Watson after radiation on Wednesday, Evan told him that he was having consistent pain in his right leg. Dr. Watson said that, among other things, it could be a blood clot. So he scheduled an appointment for Evan to have an ultrasound on his legs. Evan had the ultrasound done yesterday (Thursday) at 5:00 pm. His left leg tested fine and clear, but they found a significant clot in Evan’s right leg, from just above the knee down to his ankle.

They admitted him to the hospital, ran more tests to check for any additional clots in his lungs, and started him on blood thinners. We got the results back from the additional tests late last night, and they found two more clots (small ones) in his left lung. At the moment I’m not completely clear what all the implications of this are, except that he will definitely be on blood thinners from now on. He’ll be in the hospital at least until Monday while they adjust and manage the medication, and get his blood down to a safe level.

Thankfully we had the ultrasound done here in the American Fork Hospital, so that’s where they admitted him. I’ll be able to come home to sleep at night, it will be easy for the kids to see him whenever they want, and he’s got his own room – so it won’t be too bad. Plus, my Mom and Dad are here so they keep things running when I’m not at home.

In other news, Evan’s hair finally started falling out, in big clumps, last Sunday. By Wednesday he looked pretty mangy, so Wednesday night we had a little head-shaving party. I can report that Evan has a perfectly shaped head, and looks great! The Decadron that he’s taking, even though they’ve lowered the dose, is still causing a lot of swelling in his face and head so we were having a hard time finding any baseball hats that were big enough to fit him, but Evan’s good friend Harold surprised him with a Boston Red Sox hat on Wednesday night, and so far that one fits the best! Thanks Harold!

Anyway, that’s the latest – we’ll keep you posted! Thanks for your prayers!

Love,
Margot

September 21, 2007

2007-09-21T21:50:00.000-06:00

2 Weeks Down, 4 To Go!

Hi Everybody,

Sorry it’s been a while since my last update – there just aren’t enough hours in the day (or energy cells in my body)! By the time I get to a point in the day where I could sit down and write a letter (usually late at night) I’m just too exhausted to think and type at the same time. Anyway, thanks for being patient and for keeping us in your thoughts and prayers.

Evan had his 10th radiation treatment yesterday (Wednesday). So that’s 2 weeks down and 4 weeks to go. Honestly, at the moment, that sounds like an eternity to both of us. Maybe next week it will feel a little better – then he can say he’s half way done (with radiation anyway).

The combination of radiation and chemo is starting to take its toll on Evan. However, we’ve been told it could get a lot worse, so we’re trying to be grateful for all the problems he hasn’t had yet. He hasn’t started losing his hair yet. He hasn’t had problems with nausea. His throat, mouth, & taste buds have only been slightly affected. His skin hasn’t felt burned or irritated. And his speech and short-term memory has actually improved (I’m especially grateful for that!).

What he does feel is tired, weak, and his muscles (especially his arms and legs) just ache a lot. He basically feels like he has a bad case of the flu right now (minus the runny nose).

The weakness and fatigue are caused by the chemo & radiation, but the muscle aches are actually caused by the anti-inflammatory/steroid he’s taking, called Decadron. He’s been taking a higher dose of the Decadron ever since the biopsy, to reduce the swelling in his brain. Unfortunately, it comes with lots of nasty side-effects including significant damage to muscle tissue. So, they’ve been gradually reducing his dose over the last two weeks because of the damage it can cause. However, as they lower the dose he may start having problems with speech and short-term memory loss again. So, it’s a catch 22 – we can’t live with it and we can’t live without it.

In addition to the Decadron, Evan has about 5 other medications he takes to minimize the side-effects of the chemo medication. Antibiotics, anti-nausea pills, stuff to fight the “thrush” or yeast infections in his mouth and throat, etc. It’s really crazy to see all the stuff he has to take. He has the mother of all pill boxes, I can tell you that. One cute thing about it though – Lindsay announced last week that from now on she wanted to be Daddy’s “Medicine Girl,” as she calls it. So, four times a day (if she’s home) she takes Evan his water glass and pills. She is very proud of this responsibility. It’s just about the cutest thing ever! I wonder if we have a future nurse on our hands.

I wanted to tell you about several other little “silver-lining” events, like that, that have happened over the last couple weeks also.

Yesterday we received a thick envelope from our darling niece, Emma. Emma is the youngest daughter of Evan’s sister, Joy, and her husband Tim. They live in North Carolina. A few weeks ago at school, Emma told her teacher that she was worried about her Uncle Evan and explained the situation. Well, Emma’s sweet teacher decided to have all the children in Emma’s class make get-well cards for Evan. We had the most wonderful time opening and reading those cards yesterday. We just all sat around looking at them, saying “look at this one, look at this one.” They were absolutely delightful. We’re going to make a special scrapbook of all those cards. Thank you so much Emma!!!!!

Evan’s co-workers at BYU brought him a very cool “get-well-bear” from the Build-A-Bear Workshop. It was delivered by Evan’s wonderful boss and his sweet wife. It arrived wearing a BYU Cougars T-shirt, blue jeans, some very snazzy tennis shoes, and the coolest pair of sunglasses you’ve ever seen. It also came equipped with a little bear-sized football, of course! That has become a highly coveted item in our house. Even though it still belongs to Evan, Evan has graciously agreed to let the kids take turns having it sit in their bedrooms from day to day. Thanks to our friends in Financial Services at BYU – and especially those who have taken on extra work assignments to cover Evan’s responsibilities there. We just can’t thank you enough!

Our dear friend and neighbor organized a small army of men from our ward to take turns driving Evan to radiation twice a week for me. It has been such a blessing I can’t begin to express my gratitude. Not only has it eased the burden for me of driving time and gasoline expense, it has been the best thing ever for Evan. It’s been so good for him to have some interaction with other people, especially other men. It’s been so good! I think one of the hardest things for him has been not going to work and not having that interaction with co-workers, and other people in general, that was such a huge part of his life before. From the bottom of my heart, I thank you guys!

We have received so many other acts of kindness I can’t begin to list them all – phone calls, e-mails, visits, bread, babysitting, dinners, get well cards, gift certificates, lunches and movies with friends, and on and on. We have been so touched by the out-pouring of love and support. Thank you to each and every one of you! Also, a special thank you to my Mom. She has been here for two weeks already, and is planning to stay for another two or three. She’s going to need a serious vacation after this. Thanks Mom!!!

Well, hopefully that caught you up to speed a little bit. We send you all our love and gratitude!

Love,
Margot

September 9, 2007

2007-09-09T21:47:00.000-06:00

Treatment Begins

Dear Family & Friends,

Evan started his radiation treatment on Thursday. We thought it would start on Wednesday, but it turned out that they needed to double check the alignment points for the radiation beams and make sure everything lined up the way they wanted it to. So they spent his Wednesday appointment doing that.

He had his first official treatment on Thursday and the second one on Friday. He hasn’t felt any side-effects yet, which has been a relief, but they told us he might not feel any significant changes until later in the second week.

As for the chemotherapy, he starts that on Monday. Again, we thought he would start chemotherapy on the same day as the radiation, but our insurance company requires that we order the drug through a specialty pharmacy that only delivers through the mail. Anyway, by the time we jumped through all their hoops and waited for them to process the order, Monday was the earliest delivery date. We’re learning that nothing is ever as simple and straight-forward as you think it will be.

So this coming week will be the first full week of both radiation and chemotherapy. For the next 6 weeks he’ll have radiation 5 days a week (Monday thru Friday), and take the chemo every day (7 days a week). It certainly won’t be fun, but they’ve given him lots of other medications to counter the potential side-effects so hopefully that will keep them to a minimum. We’re just crossing our fingers and hoping that the next six weeks go by really fast.

The most interesting thing about this past week has been sitting in the waiting room with all the other patients waiting for their radiation treatments. It’s a humbling experience to realize how many other people are going through the same thing we are. We’ve seen teenagers, elderly people, men and women of all ages and walks of life. They’re all there with little or no hair, in various stages of health, and various stages of life. I sit and wonder what each of their stories might be. Somehow it’s comforting to see them - to know that we aren’t alone, to know that we haven’t been singled out for this ordeal, to know that this happens to hundreds of people just like us everyday.

In the back, near the treatment rooms, they have a big brass bell attached to the wall. On your last day of radiation you get to ring that bell. Every day that we’ve been there, I’ve heard at least one person ring the bell. I’ve quickly grown to love the sound of that bell. It tells me that somebody else made it through this and we will too.

Thanks for all your prayers – we need every one of them!

All my love,
Margot

August 31, 2007

2007-08-31T21:45:00.000-06:00

Evan's Treatment Plan

Dear Family & Friends,

Thanks for all your cards and e-mails – I’m sorry I can’t respond to each of you individually, but please know that we appreciate each of your messages.

We met with the Radiation Oncologist yesterday. His name is Dr. Watson and we liked him very much. He had already arranged appointments for all the preparation work, so we got everything done in one day which was great. Evan had to have another CT Scan and another MRI because they needed even higher resolution films for radiation than they did for the biopsy. They also fit him for a mask that he’ll wear to protect his face during treatment. It was a long day for both of us – about 6 hours from start to finish, but we were glad to get it all done.

He will start the Radiation and Chemotherapy treatments next Wednesday (Sept. 5th). For the radiation, he’ll go in 5 days a week (Mon.-Fri.) for 6 weeks. We figure his last treatment should be on Tuesday, October 16th which is exciting because Lindsay’s birthday is on the 18th, and Evan’s is on the 20th. So we’re looking forward to being done with radiation in time to celebrate their birthdays!

Each day’s radiation treatment only takes about 15 minutes from start to finish – that was a lot less time than I was expecting, so that was good news.

The chemo drug that Evan will be taking comes in a pill form and he’ll be able to take that at home, which will be really convenient. He’ll take that every day (7 days a week) throughout the 6 weeks of radiation. Then he’ll have one month off before they start it again. They’ll be doing blood tests every week, and if his white blood cell count drops too low he may have to stop the chemo for a few days till it improves, but the radiation will continue uninterrupted.

For those who are wondering how the radiation can attack the tumor without causing damage to all the other brain tissue it travels through – they will use between 3 and 6 low-dose radiation beams, each coming in from a different angle. The radiation doesn’t reach its full power dose until those beams intersect at the point of the tumor. I thought that was really interesting. We are so grateful for modern medical technology!

Anyway, so that’s the plan, in a nutshell. We’re going to relax and enjoy the Labor Day Weekend and then be ready to get all this going next week. Our ward is having a special fast for Evan this Sunday – if any of you would like to do so also that would be wonderful. Thank you for all your love and support. We’ll keep you posted as the treatment progresses.

Love,
Margot

August 24, 2007

2007-08-24T21:33:00.000-06:00

Biopsy Results

Dear Friends and Family,

Thank you for all your kind notes yesterday. Your uplifting thoughts and expressions of support mean so much to us! Thank you again!

Friday was a long day, but Evan made it home just in time to see Ryan for a few minutes before he left on his first campout with the deacons. That was such a blessing! Ryan was so excited to go on this trip, but also so worried about Evan. Once he got to see Evan and see that he was o.k., all the fear and worry disappeared and the excitement could finally take over. My dad went on the trip with Ryan, and Ryan has awesome leaders and great friends in the quorum, so I know he’ll have a great experience. We were so grateful for that.

On Friday morning the nurses told us that Evan would indeed be able to go home that day, but said that Evan’s Oncologist (Dr. Choucair) wanted to see us before we left. It took several hours before he could get over to see us. We thought he probably just wanted to check on us and answer any questions before we left, but it turns out he had our biopsy results already. Evidently he wanted a specific pathologist to analyze the biopsy, and that particular pathologist (Dr. Chen) was scheduled to leave town this weekend. Dr. Chen graciously agreed to stay late on Thursday night in order to finish the study before he left.

The results were not what we were hoping for. Cancerous tumors are rated on a grading scale of 1 to 4, with 4 being the most malignant/fast growing form. What Evan has is called grade 4 Glioblastoma. This means that the treatment will include both Radiation and Chemotherapy. Evan will have Radiation treatments 5 days/week for 6 weeks, and take a Chemo pill everyday during those 6 weeks. After that, he will have one month off and get another MRI to see what the tumor is doing. Then he will go back on the Chemo pill for 3 weeks on and 1 week off. They can continue that treatment for up to a year.

The chance of completely getting rid of a tumor like this is only 3-5%, so the goal is to shrink the tumor as much as possible and then watch it really closely after that. Statistically, the prognosis isn’t great. The average life expectancy is 2 years. However, the doctor was quick to add that although an “average” can sound really scary at first, it also tells us that the other 50% went on to live much longer than that. Since Evan is young and doesn’t have any other health problems, he should certainly expect “above average” results.

Our surgeon came by to see us also, and he was very encouraging as well. He said that statistics are helpful only to the extent that they give you a sharp and clean understanding of what you’re dealing with - so you know you can’t mess around or be naïve. But after that, we just need to put them aside because every person and every tumor will respond differently to treatment and no one can predict that. And that’s the attitude we’ve had all along, so we’re going to stick to that.

We’ll be seeing the Radiation Oncologist next week to get all the details about the treatment and do any preparation work that needs to be done. I’m assuming they’ll start treatments as soon as that’s done, but I’ll let you know.

Thanks again for all your love and prayers. We are so lucky to have such a powerful support system. We saw lots of very sick people over the last three days who did not have that. It was a very humbling experience. We’re so grateful for each and every one of you.

All my love,
Margot

August 23, 2007

2007-08-23T21:27:00.000-06:00

Evan's Biopsy

Dear Friends and Family,

Evan went into surgery this morning at 7:30 am and was done around 10:30 am. Everything went as well as we could have hoped.

Shortly after surgery, they did a CT Scan to check for any complications (bleeding, blood clots, etc.) and everything was normal. He's been in recovery all afternoon, and probably won't be moved until later this evening. He's in quite a bit of pain, but he's coherent and able to understand and communicate clearly.

He's doing well enough that they think he'll be transferred to a regular room instead of ICU, so that's really good. If he continues to do well, they could send him home as early as tomorrow - we'll just have to wait and see.

Dr. Jensen was able to collect several good tissue samples, so they should be able to make a clear diagnosis. We should get the results back on Monday or Tuesday next week. Just from the brief analysis they did today, Dr. Jensen felt confident that they could rule out the two worst-case-scenarios. He was quite sure that it was not a "germinoma" which does not respond well to radiation, and he was quite sure that this was not a cancer that had spread to the brain from somewhere else in the body. So that's all good news.

When Dr. Jensen gets the biopsy results back, he will share them with Evan's Oncologist (Dr. Choucair) and Evan's Radiation Oncologist (Dr. Watson). We have an appointment with Dr. Watson next Thursday so that's when we'll get all the details on Evan's treatment plan. If it's a fast growing cancer, he'll receive radiation and chemotherapy. If it's a slow growing cancer, he will receive just radiation. Needless to say, we're hoping for the slow-growing form.

There are no words to express our gratitude for all your prayers on our behalf. There is no question in my mind that we have received countless blessings because of your faith and prayers. Thank you all so much!

We'll continue to keep you posted.

Love,
Margot

August 15, 2007

2007-08-15T14:42:00.000-06:00

Miracle Appointments

Dear Friends and Family,

Thanks for all the kind notes and messages we have received over the last few days. They have boosted our spirits and meant so much. And thank you for all your prayers - we have experienced so many miracles in the last few days.

Over the weekend we discovered that Evan’s aunt and uncle had personal connections with people of influence at the Huntsman Cancer Institute. Also, some friends in our ward served in the same mission as one of the surgeons we were trying to see. They all graciously agreed to help us. As a result, by the end of the day on Monday, we had scheduled appointments on Tuesday and Wednesday with the only Neuro-Oncologist in Utah (Dr. Choucair), as well as two of the best Neuro-Surgeons in Salt Lake, (Dr. Jensen) at the University of Utah/Huntsman Cancer Institute and (Dr. Rich) at LDS Hospital. These appointments could easily have taken 3 or 4 weeks to get on our own. There are no words to express our gratitude for the help we’ve received.

All the doctors agree that it would be extremely foolish to try and remove the tumor surgically, so a biopsy to determine what type of cancer it is will be the next step. Dr. Rich will be out of town for the next two weeks, so the biopsy will be performed by Dr. Randy Jensen at the University of Utah Hospital next Thursday, August 23^rd. We won’t know the exact time until the day before.

Although there will be several hours of preparation to map Evan’s brain before the surgery, the biopsy itself will only take about 2 hours. If there are no complications, Evan should be able to come home the next day. The procedure is done using a GPS system and computer-controlled instruments, so the chance of complications with this procedure is relatively low (about 5%).

We’ve been told to expect the results from the biopsy within 3-4 days after the procedure. From that point on, Dr. Ali Choucair will oversee Evan’s treatment. Radiation will be the main form of treatment. However, we won’t know how often the treatments will be, how long the treatments will go on, or what level of radiation Evan will receive until we get the results back from the biopsy. If the cancer turns out to be extremely aggressive, a pill form of chemotherapy may be used in addition to radiation.

That’s pretty much where we stand right now. We won’t have any more appointments between now and the biopsy, so you probably won’t hear from us again until then.

Evan is still quite tired, but they started him on an anti-inflammatory medication to shrink the swelling in his brain and that seems to be helping. His short-term memory and other symptoms have improved a little bit. So that’s reassuring.

Thanks again for all your love and support! We love you all!

Love,
Margot

August 11, 2007

2007-08-11T14:32:00.000-06:00

Sobering News

Dear Friends and Family,

Let me start by thanking each of you for all your fasting and prayers on Evan's behalf over the last few weeks. I can tell you that your prayers are being answered because we have felt blessed and strengthened in so many different ways this week.

Since I don’t know how much or how little information each of you has received through the “grapevine” this week, I thought I would start from the beginning and catch you all up to the same place. After this, I'll try to send out updates as often as I can as things develop and we learn more.

As some of you may already know, over the last several months Evan has become increasingly tired and sleepy. The doctors we went to see tested him for thyroid problems, anemia, mononucleosis, etc., and they tried various medications, but they couldn't find anything wrong and none of the treatments helped. Evan also had another sleep study done to see if this was somehow related to the sleep apnea he was diagnosed with two years ago. There were only slight changes and nothing that would explain the severe symptoms he has been experiencing.

Then, about 4 weeks ago, Evan woke up from a Sunday nap and his left eye seemed to be drooping. The next day we went to see Evan's primary care physician about it, but he didn’t seem too concerned and referred him to an Ophthalmologist to have his eyes checked. The eye doctor didn’t find anything of concern either, and Evan’s eye returned to normal within a week or two.

Then, about 2 weeks ago, I noticed that Evan's speech seemed to be slower and his short term memory seemed a little off – he would ask me the same question several times a day, or forget things we had just talked about. So last Wednesday (Aug. 1^st) we got in to see a new doctor who immediately ordered more blood tests and an MRI. The MRI was done on Friday (Aug. 3^rd) and on Tuesday (Aug. 7^th) of this week we received the results from that MRI. It showed a large tumor (about the size of a walnut) in the center of Evan’s brain.

It just so happened that we already had an appointment scheduled that very day (Aug. 7th) with Evan’s Neurologist. We had made the appointment a week or two before as a follow-up to Evan’s most recent sleep study. That turned out to be a huge blessing because we didn’t have to wait for days and days to get a more educated analysis of the MRI. That would have been absolute torture.

The Neurologist confirmed the tumor and informed us that there were characteristics about the image that suggested the tumor was most likely malignant. He immediately got us an appointment for Thursday (Aug. 9th) with a highly reputable neurosurgeon in Provo, to find out if the tumor could be removed surgically. That appointment probably would have taken us at least a week to get on our own, so we were very grateful for his help.

On Thursday (yesterday, Aug. 9^th) we met with that Neurosurgeon, Dr. Gardner. He did not deliver the news we were hoping for. The location of the tumor is such that removing it surgically would be too dangerous. The tumor is located deep in the brain, literally halfway between the front and the back, and halfway between the top and the bottom. It sits just below the ventricles where the two hemispheres of the brain come together. Luckily it is just above the pituitary gland and is not affecting the spinal cord or the flow of spinal cord fluid. So that was good news!

The problem is that the tumor is attached to the two centers of the brain that control breathing and wakefulness. This means that if they tried to remove the tumor surgically, they would run a high risk of damaging one or both of those brain functions which could leave Evan in a vegetative state or unable to breath on his own. Obviously, the risk of that is not an option.

Basically, the only treatment options left are radiation, chemotherapy, or a combination of the two. In order to determine which treatment to use they have to determine what type of cancer it is, which means they need to do a biopsy. We really liked the surgeon we met with yesterday, but we’re going to meet with at least two more surgeons before we decide who we want to perform the procedure. We have taken Evan’s MRI films to Neurosurgeons at LDS Hospital and the University of Utah. The surgeon at LDS Hospital was recommended to us by Evan’s Uncle who is a doctor in Salt Lake, and the surgeon at the U of U was recommended to us by our friend and neighbor whose son had a very complicated brain surgery there last summer. We’re hoping to talk to each of these surgeons sometime in the next week.

In our search for a great oncologist we’ve also been blessed with great help. My close friend Jenny, who has been battling various forms of cancer for several years and knows all the best Oncologists in the area, has been extremely helpful. As a result, we were put in touch with someone at the Huntsman Cancer Institute in Salt Lake City. They referred us to the one and only Neuro-Oncologist in the state of Utah. He specializes in brain cancer. We have to wait until Monday to see if we can get an appointment with him, but at least it gives us something to hope for.

Basically we’ll be in a holding pattern for the weekend – waiting and hoping to get appointments with two more Neuro-Surgeons and the Neuro-Oncologist for next week. We anticipate the biopsy will take place within a fairly short period of time after we have those appointments and decide which surgeon we want to perform the procedure.

I’m sorry this message was so long – but now that you’re all caught up to speed, they should be shorter from here on out. I just didn’t want anybody to be confused if they were missing part of the story.

Since I don’t have everyone’s e-mail addresses, please feel free to forward this message on to anyone else you think would like to receive it. If I don’t have your e-mail address, please send it to me and I’ll be happy to add you to our list so that you can receive these updates directly.

We love you all, and are so grateful for your love and support. We’re all hanging in there – Evan and I are getting lots of love and support from our ward and our families, Ryan has been a trooper, and since Lindsay isn’t old enough to really understand what’s going on she has been our source of comic relief.

Thanks again for all your thoughts and prayers. I’ll keep you posted as best I can over the next few weeks and months.

With Love, Margot