Steve's Health Blog

Autopsy Report

2010-07-08T17:45:00.000-07:00

Mom,

Here's a little synopsis of the report:

Dad was diagnosed with a high-grade astrocytoma. This is the most common type of glioma and most common primary brain cancer. Primary brain cancer means that the cancer started in his brain, it did not spread from anywhere else. This is not a lymphoma. An "astrocytoma" means that the cancer cells were astrocytes. Astrocytes are cells that help support nerves and other brain cells in your brain. Astrocytes are a type of glial cell (helper cells in the brain) and that is why it is also called a glioma. In other words, an astrocytoma is a type of glioma.

Gliomas occur in about 5 out of 100,000 people every year in the United States. This means they are rare, but in Mesa, for example, there may be about 20 people every year that are diagnosed with a glioma.

There are NO known risk factors for developing an astrocytoma, and there is no known genetic component. This means that the rest of the Thomas family has NO increased risk of developing an astrocytoma.

Also there was nothing in Dad's life that could have caused or prevented this from happening. Cancers occur from spontaneous mutations that build up until the cells start multiplying out of control.

Senator Ted Kennedy was also diagnosed with a glioma and he lived about as long as Dad did after his first symptoms. Dad received the best care available for his condition even though he wasn't diagnosed until after the autopsy.

High-grade astrocytomas are especially difficult to diagnose because they spread all throughout normal cells and can be hard to find until the end. The pathologist looked at the previous biopsies done when Dad was alive and they couldn't see the cancer that they found in the autopsy. This means that either the cancer progressed very quickly in the months between the biopsy and autopsy, or they missed the cancer cells in the biopsies because they were too rare.

Not much would have changed with Dad's treatment even if we knew the diagnosis before he passed away. There is no good treatment for astrocytoma. The chemotherapy he received actually works against astrocytoma, but it only can extend a life for a couple months, it is not usually curative.

I'd be happy to answer any more questions anyone has.

Jacob

I miss you

2010-02-27T20:06:00.000-08:00

The Best Dad EVER by Valerie

2009-10-19T19:41:00.001-07:00

I was so afraid to get up in front of everyone, it is something that has always really been hard for me. I don't know if there are any words that can express what a great man my father was.

I remember when I was young he would come in every night and tell us bedtime stories. And not just read them from a book, he liked to make up his own! He would pick Bret up and put him on his back and make him part of the story, while Sarah and I would watch and laugh. I remember the expressions on his face and how much fun he made everything.

I also remember him taking us up on the roof and jumping off into the pool, taking us for hikes, and taking me on walks around the neighborhood when I was a teenager. He always took time to talk with me. And if I ever had something bad to say he gently pointed out that focusing on the bad only brings you down. He taught me to have a positive outlook and to focus on the good in things in life.

He used to hold my hand when we were sitting in church. I always made a point to sit next to Dad so I could hold his hand. I remember going to a young womens activity where they had us put on a blindfold and feel the hands of all the Dads in the room to guess which one was ours. I knew right away which one was him since I had held his hand so much. I was the only one who got it on the first guess and I know he was very flattered by it.

As I got older and had my own children, I was so grateful they had such a wonderful Grandpa. He would take them to the carwash with him on Saturdays, and they usually came home with some kind of toy or candy he would let them pick out. He took my boys to lunch every Saturday with him and his good friend Bill. He made bow and arrows with my kids, and set up the zip line in the back yard for them. He even organized a food fight for all the grandkids, and my favorite part about that story is that it was his idea!! He said he had always wanted to have a good food fight, so decided to make it happen. They all wore their swimsuits and we set up a table in the back yard covered with bowls of spagetti noodles, mashed potatoes, whipped cream cans, jello etc and needless to say they all had a wonderful time throwing it at each other! He was actively involved in all of their lives and made a huge impact on them.

I remember him coming home during his work day with his group of guys to get an ice cream cone after lunch. I always thought it was so funny that he needed his ice cream break during the day! Another example of him stopping to enjoy the simple things.

During his last year when he was in and out of the hospital I got to spend a lot of time talking with him. He told me he didn't want to go yet, but if he had to he had no regrets in life. He said he had a wonderful wife and 4 kids, a job that he loved, and that he had been able to travel the world. Even as sick as he was, he focused on the positive and was so grateful for everything. He also told me to try and take time every day to stop and appreciate something beautiful around me. Whether it be a beautiful flower, or sunset, there is always wonderful to see if we remember to stop and look for it.

I really wish I could have had him here for another 30 years, but I am so grateful I had him as long as I did. He was the most Chrislike, gentle, and loving man. I love you Dad!!

Remembering Dad by Bret

2009-10-17T18:20:00.000-07:00

For those of you who don’t know, last year I was fortunate enough to go on a 10 day cruise with my dad through the Baltic Sea in Northern Europe. We stopped in Denmark, Sweden, Finland, Russia, Estonia, Poland and Germany. I kept a journal while we were on the trip. I’d like to read something from it. We were in Copenhagen and we’d been walking all day.

“We went into the central train station to use the restroom. It was an enormous building with an expansive, glass paned ceiling. Afterward we sat on a stone bench to rest our feet and people watch. Dad noticed there were a number of pigeons inside the enclosed train station. We talked about how they had everything they needed right there. They had food, water and shelter. Dad wondered if there were any pigeons that were born in the station and lived their entire lives there, totally unaware of the world outside. Like people who never leave the cities they were born in.”

I think this gives a good sense of who he was. He had a unique way of looking at things. He could take an ordinary event and make it into something extraordinary. He viewed the world with a childlike sense of joy and wonder. The world was a better place with him in it.

Thoughts about Dad by Jacob

2009-10-16T05:53:00.000-07:00

This past General Conference of the Church Elder Ballard gave a talk about how Fathers and sons could communicate better. During that talk I had a very strong impression to write a letter to Dad about how great a Father he has been to me. I knew I could never get him to listen to me talking about how great he was any other way. I started writing the letter the Sunday before he passed, and I was going to stop and get ready for bed, but I just had a feeling that I needed to get this done sooner than later. I thought that was strange because I had no reason to think that things would be any different for Dad that week. I didn’t quite finish it, but then on Monday night I really felt like I had to get it done and e-mail it to my Mom to print out that night. Mom brought it over and read it to Dad on Tuesday, which was literally the last possible chance for him to hear what I wrote. I wanted to share just a few parts of my last letter to Dad:

“Some of the best memories I have are our adventures we had traveling...I remember going to California with you many times. I remember one trip in particular where you took me to several different skateparks in several different cities. Looking back on that I realize that there were probably plenty of other places you would have liked to go see, but we spent the majority of that trip going to those places just for me.

And then there was the time you took me over to Chicago. I thought it was such a fun, cool city. And I still brag to people that I got to go inside the Nauvoo temple before it was finished. That was really fun getting to explore the inside of the temple and seeing things in more detail than you normally get to. I really liked that one spiral staircase. I think that trip was the reason I applied to so many schools out in Illinois. Little did I know that I would be calling Illinois home for four years.

I could go on and on about all the fun times I had going on trips with you. Now I want to tell you about your example of service to me. What always stands out to me is your selfless service you gave to Frank and his brother John.”
For those who don’t know Frank Sepko and John Kilian, they were a couple of men in our neighborhood that Dad spent countless hours helping. John was a little bit of an odd fellow, but Dad didn’t mind and he faithfully gave John a ride to church and the grocery store and let him sit with our family every week. Frank was very demanding and was always calling Dad with orders more than asking for help. Now back to the letter:

“I don’t think many people would have gone to the lengths that you did in serving them. Many people were turned off by John’s quirky behavior but I always remember you just saying good things about him. I think through that and other experiences you taught me not to judge people on their outward appearance but to enjoy them for who they are. You were able to see that he was actually a sweet man that had a difficult life living with his brother. I also was always impressed with your patience with Frank and your willingness to help him even when he was not always very polite.

...I can honestly say that I can’t think of one time in my whole life that I thought you were angry with me or that you raised your voice about something. I am even more amazed at that now that I have children of my own. Looking back, I am amazed at your self-control and that you never lost it on me during my teenage antics.”

In addition to these thoughts from my letter I wanted to share just a few stories about Dad. At my Grandpa Jack’s funeral Dad got up there and just ‘told it how it was’ about some of his quirks. I thought it only fitting that I should do the same for Dad now.

One thing you should know about Dad, that even though he loved good food, he really could not cook. In particular I remember one horrific grilled cheese sandwich he made for me. He liked to experiment with different spices, and this time he about emptied the spice drawer onto our sandwiches. I remember distinctly the sharp crunch of the spices followed by an overwhelming assault on my taste buds. He actually seemed pretty satisfied with his creation, but I just couldn’t bring myself to finish it.

If you’ve ever driven with my Dad you would know that he tended to either slam hard on the gas or hard on the brake. Once I was old enough to learn about the speed limit, I dutifully let him know that he was speeding. Then he informed that “actually, white Chevy trucks are allowed to go ten over the speed limit”.

Christmas was always big for us, and like any other kids we wanted to wake up early to get our presents. I think one year I wanted to wake up at the precise moment that it was Christmas. This was when he let me know that the next day actually starts at 4:00 a.m., not at 12:00 a.m. I went on believing this until I was well into elementary school.

He never could get our names straight. I really don’t remember him too often just calling me Jacob. It was usually Bret...uh...Jacob or Sar...uh...Jacob. And before I came around he just called all three of them “Sarahvalabret”.

Sarah's Tribute to her Dad

2009-10-15T13:09:00.000-07:00

There is not much I can say in just these few minutes that can sum up what a wonderful person my father was. Each of you is here because he touched your life in some way and I am so grateful for your support today.

My father had a very youthful energy about him and he was always on the go. Many of my memories of him as a child are of me running behind him trying to catch up. He loved to have fun and was very spontaneous; if something sounded fun he just did it.

When I was a kid he took a large board that he had found and he attached kitchen drawer pull handles to the top and wheels on the bottom. Somehow he fixed a rope on the front of the board and he would have us sit on it in the driveway while he spun us around as fast as possible. I remember hanging on for dear life and loving it. He was always doing fun things like that until my mother caught him doing it.

He had a very funny sense of humor and did some really funny things. When Valerie and I were little my mom would be bathing us and she would say, “Oh I think Mr. Shampoo man is coming to wash your hair!” Then my dad would come in in this yellow bathrobe and curly black wig and thick rimmed glasses. He would wash our hair and act silly and then he would leave and say “See you tomorrow night!” I remember thinking that everyone had a man come wash their hair at bath time until I realized one day it was my father.

He loved holidays and would always make things very exciting. I still remember one New Years Eve he was running around the house hugging each of us and saying “get the last hug of 1984” “hurry get the last kiss of 1984” and then we took out my mom’s pans and banged on them for about ten minutes past midnight.

He used to like to take us to “visit the snow” each winter. He would get us up early on a Saturday and toss us in the car and head up north. He would take us tubing or even just take us to an empty field and let us throw snow at each other until our feet got too cold in our tennis shoes. Then we would all pack into the car and head home again. One year I remember he took a shovel and filled the back on our truck with as much snow as he could. We then drove home and he spread the snow all over our front yard. All the neighborhood kids came over and thought that was the neatest thing. I remember them asking him where the snow came from and he said “we woke up and it was here – it didn’t snow at your house?”

Once when I was a little older my father came home from work one day with a huge snake. He was so excited because he had found it on a job site. He was pretty sure it wasn’t dangerous. He decided to stick it in an old gerbil cage. A little while later someone looked over and said “where is the snake?” Well of course the snake had easily pushed open the lid of the gerbil cage and was loose in the house. My sister and I ran out into the backyard and refused to come back in until he had found it. Luckily he found it just as it was crawling into a hole in the wall. I don’t know if I could have ever slept in that house again. My mother made him take it back to where he had found it.

My father found the perfect match in my mother. She was patient with him and he loved her more than anything. He didn’t always express it because he was quite shy, but I never doubted for a minute that he loved my mother and he loved me.

For better or for worse my mother was left in charge of all discipline in our home. I don’t think he wanted to burden her with that; it was just that he couldn’t bring himself to do it. He was just so kindhearted and he really hated confrontation. He never raised his voice, EVER, and he never used foul or rude language. He was famous for that and I have heard that once he was working in a house and slammed a hammer on his thumb. The whole construction site went quiet as they waited to see if Steve would finally say a bad word. But he held it in and after a few seconds went back to work.

He was the hardest worker and would often work all week and even Saturdays. Then he would get up and take us all to church every Sunday. I took it for granted at the time but now I realize how much he sacrificed for us. When ever he did have a free Saturday he always wanted to be outdoors. He would take us hiking all around the valley, especially Four Peaks and his favorite, Camelback Mountain where he grew up. He would take us on treasure hunts in the Superstition Mountains and loved to tell the story of the Lost Duchman.

As most of you know my father was a painter my entire life. The smell of paint always reminds me of my childhood. I have made many many art projects out of masking tape over the years. I have always been very proud of him and his artistic abilities with his decorative painting. He had such a creative spirit and he is one of the lucky people who discover a way to make their living doing something they truly enjoy.

My father loved to learn new things and was always interested in the most unique subjects. When I was young he was into magic and I remember him having all his props around the house. He performed at my elementary school and put on quite an elaborate production. One of my uncles dressed up like Darth Vader and a friend was Princess Leia and the kids loved it.

His greatest contribution to the church was his calling as a primary teacher. He loved teaching primary and children just naturally adored him. He taught primary for many years. He was never condescending with people who were younger than him and he had a way of teaching the gospel to children so that they could understand it.

For a long time my father hated computers and refused to even touch one until finally just a few years ago we got him to use the internet. That turned out to be one of his favorite things. He loved being able to read about places and subjects. He loved travel web sites and was always looking for good travel deals. In another life he would have made a great travel agent.

He was the greatest grandpa and just adored his grandkids. He would always take them to the dollar store to get a prize or down to the park or just run around with them in the backyard. He always came up with fun projects for them to do and toys for them to play with. I don’t know how many times he tested out the Mentos / Diet Coke experiment, but he loved stuff like that.

I am so grateful that right before he became sick he was able to take a cruise to Northern Europe with my brother Bret. That trip meant a lot to him and he was so excited to explore the world.

I could tell stories about my father for hours but there will be plenty of time for that in the future. I intend on telling these stories to my children over and over so that they never forget what a wonderful man their grandfather was.

My father firmly believed that there is a God in heaven who lives and loves us. He believed that there is a purpose and a reason to each of our lives and that death is an inevitable part of that. Not too long ago my father told me that he was disappointed that he was going to have to die so soon, but he was thankful that he had lived a good life with people who cared about him and loved him. He said the blessings he had been given in his sixty one years of life had been more than anyone could ask for. His only true regret was not being able to grow old with my mother.

I would like to say a few words to Steve’s grandkids. This has been a really tough year for our family. I want you to know that Grandpa is not scared and he is not sad. He is not in pain anymore and he can move around like he used to. Grandpa is with his mom and dad and with his friends and family who have gone before him. He is with Doogie and I am sure that Doogie is introducing Grandpa to all the friends he has already made in heaven.

It is OK to be sad and its OK to cry. It is also OK to be happy and OK to laugh. Grandpa Steve and Doogie will both be watching over you for the rest of you lives. The greatest thing you can do is to live good long lives and to honor their memories. Heavenly Father loves you and wants you to be happy. He loves Grandpa Steve and he loves Doogie and he will take good care of them until we see them again.

My father loved the New Testament scriptures and I would like to close with a verse from John Chapter 4 verse 7. “Beloved, let us love one another: for love is of God; and every one that loveth is born of God and knoweth God.” My father loved with all his heart for all of his life and that love will carry on long after today.

The hardest part of a funeral is the end. It is hard to say goodbye to a loved one and go back to the demands of daily life, but it must be done.

Goodbye father, I love you and I hope to live my life in a way that would honor you.

Tribute To Stephen by Mary Nielson

2009-10-14T21:33:00.000-07:00

October 13, 2009

I’m honored to be asked to say a few things about the early life of my wonderful brother Stephen. In 1940 when Jack and Ada Thomas married, dad gave our mother a ring with 6 diamonds in it. One for each of the children they hoped to have.

Chuck was born first, I was second and then John …and they thought they were half done. But it was discovered that mother had serious spinal and back problems that might cripple her if she bore another child.

After several years her health seemed better. In her prayers she made a promise to God that if he would bless her with health and more children, she would devote her life to teaching them to love the Lord and to serve their fellow men.

After Stephen’s birth, she wrote: “Stephen is such a beautiful child. Every time I look at him I think of my wonderful blessing. He has given me new hope.”

I was 5 years older, and liked to pretend I was his mother. I was there clapping with delight when he learned something new, like sitting, walking and learning to talk. Mother said that he would talk and sing all day, but when we came home from school he would get quiet. Because when he said something, we would say “Oh, he is so cute”, and he did not like to be the center of attention. When visitors would come to our house, he would disappear. He even hid at one of his own birthday parties.

Stephen was happiest when he could be outside. When he was 3, mother made a list of what she found in his pocket.
1 feather
2 checkers
6 bent nails (his fish hooks)
1 old curler
1 bottle cap
1 peg from an old ukulele
1 piece of broken glass”

When he was 8 we moved to Prescott. Stephen discovered gardening and planted bulbs and strawberry plants and carefully tended them. Mother wrote: “Stephen is still the same quiet rather shy boy that loves to feed the birds and squirrels and water anything that will grow. He has lots of friends that come here to play cowboys. He has no enemies.” (I loved that…no enemies…he was too kind to have enemies.)

He was a bit of a tease once in a while though…..Our sister Margaret tells how she would sit by Stephen at meal time. She was about 4 years old and he was 12…and was very nice to her. After the prayer was said, she would reach for her glass of water and it was always empty. So she would have to go get some more. That happened almost every night.

Years later, Stephen told her what happened. He would drink his water before the prayer was said. Then during the prayer he would switch his glass with hers.

“When he was 13 he started a morning paper route and arose at 4:30am every morning to deliver 100 papers. He liked to go to bed at dark and then get up and enjoy the morning.”
All that sleep paid off and he grew to 6’3” ….as he entered Arcadia High School.

Some things he loved were animals….all kinds. He had pigeons, snakes, rabbits and a rat named Arthur. He liked Andy Griffeth, Wallace and Ladmo and Maverick.

He liked basketball, high jumping and running. He played the cello and bass. After High School he played bass in his brother Chuck’s popular “Honey and Soul” band.

He had a Tepee, and loved to go camping and biking with his brothers. He attended NAU and then spent 2 years as a missionary in Canada and Montana. During those 2 years he devoted all of his time to the Lord by giving loving service to others.

As I think of Stephen’s life, I realize that my younger brother, who I used to “mother”, has become my teacher in many ways. He quietly served, avoiding recognition. When he saw a need and he quickly responded. He regularly visited and cared for our parents in their old age.

I believe our mother was successful in the promise she made to the Lord…..Her son truly loved and served his fellowmen.

We love you Stephen.

Mary Nielson

2009-10-08T20:18:00.000-07:00

Stephen Neville Thomas

We lost Steve October 7, 2009. He maintained his gentle and kind nature to the end, thinking more of others than himself. Steve was born January 17, 1948 in Glendale, CA, the fourth of ten children. He graduated from Arcadia High School in 1966 and served in the Western Canadian Mission for the Church of Jesus Christ of Latter-day Saints. Steve and Mary were married July 7, 1973 in the Mesa Arizona Temple. Steve discovered his artistic talent which developed into his profession as a decorative painter. He made the life of decorators easier with his ability to match colors and his I-can-do-that approach to any idea they had. Steve loved to travel. He enjoyed the fall in New England, going through the Nauvoo Temple as it was being completed, and touring England and Scotland while working on the Preston England Temple. He traveled to Northern Europe just before becoming ill and came back with wonderful memories. Steve was a gardener. His home was surrounded by beautiful flowers. He had a “pack of dogs” and an aviary filled with love birds. Steve loved and had a testimony of the gospel of Jesus Christ. His favorite calling was serving as a Primary Teacher. He had a gift for communicating with young children and taught the gospel to many children over the years. Steve’s family was his greatest love. He was a wonderful husband, father, and grandfather. He worked hard to provide for his family, but took time to go on walks with his teenagers. He loved carrying babies with him while he worked in his yard. He was a kind, gentle man. He will be missed by family and friends.He is survived by his wife Mary, children Sarah (Tom) Purcell, Valerie Hyde, Bret Thomas, and Jacob (Veronica) Thomas. Grandchildren: Emma, Elizabeth, and Michael Purcell, Josh, Brad, and Hailey Hyde, Jocelyn and Natalie Thomas. Siblings: Chuck (Diana) Thomas, Mary (Russell) Nielsen, John (Madge) Thomas, Carol (David) Herring, Helen (Artie) Hancock, David (Gayle) Thomas, Margaret (Larry) Manning, Martha (Doug) Moyer, and Richard (Diane) Thomas. Predeceased by his parents, Harold “Jack” and Ada ParkinsonThomas and son-in-law, Gordon “Doogie” Hyde. Visitation will be Monday, October 12, 2009 from 6:00-8:00 p.m. at Bunker’s Garden Chapel, 33 N. Centennial Way in Mesa. Funeral Services are Tuesday, October 13, 2009 10:00 a.m. LDS Chapel, 2222 E. Brown Rd. with visitation at 9:00 a.m. Interment following at the

City of Mesa Cemetery.

Steve's Visitation and Funeral Arrangements

2009-10-08T15:59:00.000-07:00

Monday, October 12
Bunker's at 33 N. Centennial Way
Visitation 6:00 p.m. to 8 p.m.

Tuesday, October 13
Mesa East Stake Center
LDS Chapel
2228 E. Brown Rd.
Visitation 9:00 a.m.
Funeral 10:00 a.m.

Interment following services at Mesa Cemetery

We lost Steve at 1:50 a.m. October 7, 2009

2009-10-07T06:24:00.001-07:00

I visited with Steve yesterday afternoon. He was awake and still hoping to get chemo today. We had a good visit and he said our family prayer before I left. He definitely expected to live a while longer.

The hospice nurse called shortly after midnight and told me that Steve was deteriorating and he expected him to pass within 24 hours. The nurse told me to try to get some sleep, but knowing that would not happen, I sent emails to family and left for the facility. As I entered Arbor Home, the nurse had the phone in his hand and was calling me. Steve was worse. I got to spend about 40 minutes with him before he passed. He did not struggle. His breathing was rougher with pauses. He gradually took fewer breathes until he quit breathing, I called the nurse and the nurse confirmed that he was gone.

Steve was one of the finest men I ever knew. I feel privileged to have had him by my side for so many years and look forward to being reunited with him again. I have cried privately this past year and know I will continue to have waves of emotions for a long time to come. He is truly in a better place.

Funeral arrangements are pending - probably Monday or Tuesday.

Hospice of the Valley - Arbor Home

2009-10-02T16:42:00.001-07:00

Steve will move this evening to Arbor Home at 6063 E. Arbor Ave., Building B in Mesa. East on Main, turn South on Recker, turn East on Arbor. On the South side of Arbor look for the Hospice of the Valley dove on the sign.

Steve has had me worried this week. He had a distant look, was in considerable discomfort and was NOT watching the Food Channel. I knew he was not feeling well.

I am excited to announce the Food Channel is on again!!!

stevethomas2000@gmail.com cell: 602-315-5853

mthomas2604@gmail.com cell: 602-315-5854

Hospice - a scary word

2009-09-29T14:04:00.000-07:00

When I think of October, I think of Halloween - one of my favorite holidays. I love seeing children dressed up, excited, running house to house. I enjoyed Halloween as a mother because I would meet new neighbors and visit with friends as we walked with the children.

With Halloween, I also thought of scary things - so I guess it is appropriate that this October we have to face this scary new part of our life - Hospice.

Hospice has always meant the end - giving up...

I am learning doctors recommend hospice when the patients life expectancy is less than six months.

I am learning it also means providing comfort and cherishing the moment.

How much time do we have?

No diagnosis = no prognosis

There is a Palliative Care specialist reviewing Steve's chart. He said yesterday that when people are declining month by month - they have months to live, declining week by week - weeks to live, day by day - days to live. That makes sense to me and is a formula I can remember.

Steve is definitely worse than last month. That is scary.

Looking for a good facility......

2009-09-22T20:30:00.000-07:00

One place turned Steve down - they felt insurance would not pay enough.
One place we turned down - we felt it was a depressing facility.

Now the Case Worker is looking at options. Like all the employees we have worked with at St. Joe's, she is amazing. She is working to find a good facility for Steve.

Steve is still at St. Joe's and will receive his chemo on Wednesday.

Steve is still at St. Joe's

2009-09-19T07:42:00.000-07:00

Steve is still at St. Joe's.

The case worker is looking for a skilled nursing facility in Mesa that will accept Steve while he is taking chemo. It will be nice to have him closer to home. It will be hard leaving St. Joe's where the staff is amazing.

Thank you to those who emailed Steve - stevethomas2000@gmail.com

Thank you to those who were able to make the trip to Phoenix to visit.

The Next Step.......

2009-09-13T10:36:00.000-07:00

On Monday and Tuesday all the various doctors (neurology, oncology, renal, pulmonary, internal - I have probably left someone off the list) assigned to Steve are going to be recommending the next phase of care.

If he is strong enough to do 3 hours of rehab each day he will be transferred to Neuro Rehab at St. Joes.

If he can only tolerate 1 to 1/2 hours of rehab he will need to go to a Skilled Nursing Facility to gain enough strength for the more advanced rehab.

The docs also will be working out a treatment plan (how often he will receive chemo) and decide when he would have the next MRI to determine if he is progressing.

And of course, everything depends on how Steve's body reacts to all that is thrown at him.

Please keep visiting. Please keep praying.

email Steve at stevethomas2000@gmail.com
I will read every email to him.

after 6 - l o n g - w e e k s . . .

2009-09-09T20:11:00.000-07:00

Steve got chemo today. Now we watch and wait.

Nothing New (and that is good)

2009-09-06T10:56:00.001-07:00

Steve is enjoying visitors. We know St. Joe's is a long drive for most of you. We appreciate your effort on his behalf.

There is nothing new medically.

Steve seems to have stabilized. Tuesday the neuro-oncologist will be back and we hope she will feel that Steve can have chemo.

A Bit Better

2009-09-02T20:45:00.000-07:00

Steve has been very sick - many small problems that together are huge. After a hard month, things are a bit better. Steve's lungs are clear and his kidney functions have been gradually improving. Chemo will not be scheduled until he is healthy enough to handle the treatment.

At a particularly low point, I asked the neuro-oncologist what she thought about our situation. She said Steve is a fighter and as long as he is determined, she is with us and will do all she can. It was comforting to feel her strength and determination to help my sweetheart.

Our hope is that Steve can have an improved quality of life.

Thank you for the visits. Thank you for taking out our garbage cans and feeding our dog. Thank you for the encouraging voice messages. Thank you for your prayers.

Steve enjoys visitors

2009-08-28T09:42:00.001-07:00

Several people have asked if Steve would like visitors and where he is.

Steve does enjoy visitors. Visitors lift his spirits. He is at St. Joseph's Hospital in Phoenix. He has moved to 5 different rooms since entering the hospital on Aug. 2. If you have time to visit, check at the front desk for his latest room. Visiting hours are 8am to 8pm. The hospital staff prefers a few visitors at a time, but they will not turn you away.

I spend the days with him on Friday, Saturday, and Sunday. I visit after work on M-Th, usually 4:00-6:30 - and sometimes when I miss him too much, I come in earlier.

Steve is weak, but definitely lucid and has his sense of humor.

some days are harder than others

2009-08-26T13:00:00.001-07:00

Steve has not been stable enough to receive chemo. Steve is having some issues with kidney function. And he had a "slight bleed" internally. He has a urinary tract infection again. So many things to consider before receiving chemo.

We are trying to remain optimistic. It is a hard day.

We do trust in the Lord with all our hearts. We feel our Savior's love.

But it is still hard.

The Food Network

2009-08-23T09:48:00.000-07:00

Steve is doing well. He is scheduled to get a Chemo infusion Monday.

This week he had a feeding tube inserted into his stomach. He had been eating a soft food diet and was still having aspiration problems. No eating or drinking by mouth.

He is still watching the Food Network. It would be torture to me to not be able to eat and watch all that delicious food being prepared. Steve enjoys watching cheerful people doing real things. He is planning the menu for a campout with Grandpa Hyde and grandsons Josh and Brad.

Finally, Steve is improving again.

2009-08-18T20:30:00.000-07:00

Steve is finally out of ICU.

The Tumor Board met and at the advice of the neurosurgeon, Steve will not get another biopsy. The neurosurgeon told us that the lesion is in a difficult place to reach and the lesion is not a good candidate for biopsy. He feels he got good samples especially on the second biopsy.

Steve is relieved to not have to face surgery now that he is getting stronger.

Steve has had a thrush, a urinary tract infection, aspiration pneumonia, and shooting pains caused by the shingles. Thankfully, the shooting pains have subsided. When he is free of any active infections he will get more chemo.

We appreciate all the prayers on our behalf. I sincerely believe prayer has made a difference emotionally and physically for both of us this past year.

S T I L L in the ICU

2009-08-15T10:49:00.000-07:00

Steve is still in the ICU. He continues to have issues with different things. One day his magnesium and phosphorus were low. The next day his sodium was low. Then his sodium levels shot up.

He had a swallow evaluation. He has difficulty swallowing liquids which is the probable cause of pneumonia. The Speech Therapist will be working with him to strengthen his swallowing.

This is a long slow process (understatement).
They hope to do the biopsy on Monday or Tuesday.

A big thank you to all who offered to and did do the midnight irrigation.

Still in ICU

2009-08-11T14:37:00.001-07:00

The Good:
Steve's blood pressure and breathing are better - still up and down - but better. He no longer is taking medication to keep his blood pressure up. He is down from 15 liters/minute of oxygen to 5 liters/minute.

The Bad:
Steve has a slight case of pneumonia and a blood clot behind his left knee.
They have started him on antibiotics and have put a filtering screen in a major vessel to keep the clot from going to his heart or lungs.

The Ugly:
A new lesion has developed outside of his brain stem that is large enough to biopsy. When Steve is well enough, they want to do a third biopsy. If they could get a diagnosis, they could have a more definite treatment plan.

Steve is back in ICU as a precaution

2009-08-09T14:07:00.000-07:00

Steve had trouble keeping his oxygen level in a good range on Saturday evening. They were able to stabilize him by giving him oxygen at 15 liters/minute. They are reducing the rate gradually.

On Sunday morning his blood pressure dropped again. He has been transferred back to ICU as a precaution to closely monitor his statistics.

Luckily he does not feel any different with all the changes. He feels comfortable. He has a fantastic appetite although they have put him on a soft food diet - ugh.....

The doctors said that Steve's body does not follow medical rules.

The Best News in a Year

2009-08-07T09:18:00.000-07:00

A MRI was done and for the first time in a year, it came back with less swelling and a slight change in the lesions!!!

He is amazing us again

2009-08-06T11:32:00.000-07:00

Since Sunday we have had too much excitement.

Monday at 1:30 a.m. Steve's blood pressure and oxygen fell again. He had a breathing tube inserted. On Monday and Tuesday, his blood pressure was hard to regulate. Steve was completely aware of what was happening and was able to communicate with the staff and family. He decided he wanted the breathing tube removed. The doctors explained that removing the breathing tube could jeopardize his stability, but Steve was determined. Wednesday morning, the tube was removed and Steve's oxygen level fluctuated during the morning, but not dramatically. By Wednesday afternoon, everything leveled out and he has done very well.

Steve is moving from the ICU back to the hospital floor. He is starting to eat again. Physical Therapy will get him up and around. We do not have a discharge date, but feel that we are on the way.

Steve is back in the hospital

2009-08-02T20:59:00.000-07:00

Steve was admitted on Saturday to the hospital. He was having several issues that were beyond my nursing skills.

Today (Sunday) when I arrived he was deeply asleep. He had had a good night and when I spoke with him earlier he was cheerful, feeling pampered, and well-cared for. I was unconcerned and sat with him. The nurse checked on him regularly. After three hours, when the nurse checked on him yet again she felt that his lips looked blue. Within a few minutes it was determined that his blood pressure and blood oxygen were very low and there were at least 10 people working to stabilize him. A CAT scan was done and it was determined that he did NOT have a stroke. They have not determined exactly what caused the problem, but with all that he has going on neurologically, he could have a variety of issues.

After things calmed down, he was awake for about an hour and we got to talk. He was lucid, but very tired.

Tonight he is comfortable in the ICU being closely monitored.

I cannot say enough good about the nurse who cared for Steve today. I appreciate so much her concern and skill. She was Steve's nurse in April as well and remembered us. We have been blessed with exceptional medical care from the beginning of this ordeal.

Thank You does not seem like enough

2009-07-26T09:44:00.000-07:00

My co-workers did a HUGE and CARING act of service for us.

Thank You does not seem like enough for all the time and effort that was put in to the fund raiser they held for us on Thursday.

To see all the pictures got to http://picasaweb.google.com/lh/sredir?uname=krounsborg&target=ALBUM&id=5361875684396040353&authkey=Gv1sRgCJ7SwsrexvXsuAE&invite=CM2tkaEN&feat=email

Thank You

Enough money was raised for airfare to Mayo Clinic at Rochester.

Now we have to get Steve healthy enough to travel.

Thank You everyone who participated.

What a week!!

2009-07-24T16:02:00.000-07:00

Steve has had quite a week with the shingles. He was itching horribly, then started having shooting pains. We tried everything we could think of or that was suggested to us. Finally on Monday night we took Steve to the ER to get things under control. Steve was discharged at 3:30 a.m. Tuesday morning feeling much better. We had used so many different kinds of topical creams that we had broken down the skin. (I do not see a future in nursing - Nurse Mary cares but is sadly lacking in knowledge) We are now trying the "leave it alone" and "expose it to the air" method along with pain and itch medications.

The pain is better, but flares occasionally. The itching is still a problem. Today our GP gave us a new RX to try for the itching. We continue to experiment.

Steve is doing fairly well

2009-07-17T14:43:00.000-07:00

Steve tolerated the chemo well - we have learned that zofran keeps him from being nauseated. We do need to be careful to keep him protected from any illnesses. His immune system is down. He has developed shingles - very painful.

Steve needs help walking. He is weak and his balance is off. He cannot be home alone. Steve's main amusements are cooking shows. Thank you Rachel Ray, the barefoot contessa, the Neelys, the guy with the blond spiky hair, the guy who eats weird stuff. We continue to hope that this new treatment will increase the quality of his life. Some patients begin to feel improvement after the second treatment. We hope Steve is in that group.

If he gets healthy enough, we hope to go to Mayo Clinic in Rochester to a neurologist who deals with undiagnosed brain lesions. Everything is a guessing game right now. I feel like we are playing Deal or No Deal (a tv show I had not seen before the last few months - why is it amusing?) with Steve's life. We are praying for continued guidance in his treatment. We also give thanks that he is healthier than his MRI indicates he should be.

My brother Ken is going home tomorrow. Steve and I have been pampered for two weeks. Ken has cooked wonderful food for us. He has been a huge help in offering time-off for our children, friends, and our Ward family that have been going the extra mile for months. And I have definitely been spoiled in the evenings with extra help.

THANK YOU KEN!!

THANK YOU KATHY FOR BEING WILLING TO LET KEN COME!!!!!!!

Enjoy time with those you love.

You never know when things will change.
As Gordon (Doogie's Dad) has said for years,

"These are the good old days."

A Few Positives and the Next Step

2009-07-11T16:14:00.001-07:00

The positives are:

The steroids that Steve is on do seem to be helping s l i g h t l y and we will take anything at this point. His left hand is usually numb and practically useless. For the last four days, when he first wakes up in the morning, his hand feels normal for a few minutes. It has been a month since he experienced those cherished few minutes. Steve has felt other slight improvements as well.

The treatments have been approved!!!

The Next Step:

Steve will have 4 infusions two weeks apart starting next Wednesday. The next MRI will be at the end of August.

We were told that IF this is pontine glioma, Steve can expect to be feeling better after the second infusion.

We are cautiously hopeful.

36 Wonderful Years Today

2009-07-07T14:42:00.000-07:00

Today is our 36th Anniversary.

I had no idea 36 years ago what a wonderful man I was marrying.

He has loved me and spoiled me.
The best compliment I can pay him is that he is the same person privately that you see publicly.

Lucky me!!

The Neuro-Oncologist

2009-07-01T17:49:00.000-07:00

The Neuro-Oncologist, Dr. A, saw Steve today. She feels we need to try to get insurance approval for a drug that is used to treat pontine gliomas. It is very expensive ($23,000 per infusion) and because we do not have a definite diagnosis, she is not sure insurance will approve the drug.

She showed me the April MRI next to the June MRI and even after three treatments of chemo the swelling and lesions are definitely worse.

Steve cannot take any treatments until the middle of July. Since steroids helped reduce the lesions in March Dr. A is putting Steve on steroids for the next two weeks in an attempt to control the disease - she is ordering weekly blood tests and seeing him weekly to monitor his progress.

Proverbs 3:5
Trust in the Lord with all thine heart....

Maybe Wednesday

2009-06-30T16:41:00.001-07:00

Thanks to the kind, thoughful, and amazing Dr. B who has been an advocate for Steve, we have an appointment with a new oncologist for tomorrow (Wednesday). The new oncologist specialises in neuro-oncology and is partner to the head of neuro-oncology at Barrows. She remembers Steve from past tumor boards and has agreed to review his case. Hopefully we will come home with a treatment plan determined and scheduled.

Steve is losing ground. He is weaker than a month ago.

Maybe Tuesday

2009-06-29T19:35:00.000-07:00

We got a call at 6:00 pm. They hope to have a treatment plan tomorrow.

Waiting for Monday

2009-06-23T13:32:00.000-07:00

Dr. B called.

Steve will receive the same chemo on Friday that he has previously received. The logic is that the lesions would have grown or spread more without the chemo.

On Monday, the Barrow's "Tumor Board" will meet and his case will be presented. The "Tumor Board" is a meeting of the top docs at Barrow's. All the new cases or, in Steve's case, cases with additional information are presented and all the doctors will make their recommendations. A new treatment plan will be developed for Steve.

Now we wait for Monday.

The chemo has not stopped the lesions

2009-06-22T19:03:00.000-07:00

Dr. B (neuro-immunologist) called at 6:00 pm.

The chemo has not stopped the lesions. The original lesions and edema are still there and there is one additional lesion in the brain. Dr. B will contact the hematologist/oncologist tomorrow and discuss the next step. Dr. B feels that an aggressive approach needs to be taken - possibility a port placed in the head to administer chemo directly to the brain.

The Latest MRI

2009-06-20T18:10:00.000-07:00

Steve got a MRI on late Friday afternoon. We are waiting to get the results.

I got a copy of the MRI and have viewed it. There is definitely "stuff" still in his head. We are waiting to get the official reading. I cannot tell old lesions from new lesions OR if the lesions are smaller. I can only see there are things that should not be there.

Steve has not felt particularly different. He is weak and numb on his left side. He feels achy. He is having some numbing on his right arm.

Thank you for all the expressions of love at our loss of Doogie.

Memorial for Doogie In Queen Creek on Saturday, June 13

2009-06-06T12:42:00.001-07:00

A Memorial service will be held Saturday, June 13, 2009 at 6:00 p.m. at the Church of Jesus Christ of Latter Day Saints Chapel, 20415 E. Chandler Heights Rd., Queen Creek, Arizona.

Gordon Lynn Hyde II
- Doogie -

Captain Gordon Lynn Hyde II, 35, passed away tragically June 3, 2009 from injuries sustained in a swimming accident in Chicago, Ill. Born November 18, 1973 in Monticello, Utah to Gordon Lynn and Joyce Bradford Hyde. He married Valerie Lea Thomas May 23, 1998 in Mesa, Arizona; solemnized Jan.15, 2000 in the Monticello, Utah LDS temple. He graduated from Lassen High School in Susanville, Calif., completed an honorable mission at Kobe Japan, owner of H & H Technology, avid hunter, fisherman, and a Captain flying for SkyWest Airlines under the United and DELTA banners.

To know him was to love him; he lived life fully, loved unconditionally and will be missed by all. Our appreciation to all of the doctors, nurses and staff that did everything possible. Words do not describe our appreciation to the SkyWest Team from the top to the bottom for their help, support, prayers and strength, you have shown us great honor and by so doing, honored yourself.

He is survived by his wife Valerie, children Joshua Lynn, Bradford Thomas, and Hailey Jo, sisters Audree (Chris) Roberts of Layton, Holly (Matthew) Unrein of Tooele, parents Gordon Lynn (Susan) Hyde of Sandy, Joyce Bradford (Jay) Fackrell of Midvale, grandparents LaRae and Kay Bradford of Blanding, nieces and nephews. Preceded in death by grandparents Gordon (Zona) Hyde and Donna Anderson Holdeman.

Funeral services will be held Monday June 8, 2009 Eleven am at the Sandy LDS Crescent Ridge 5th Ward Chapel, 10975 S Prescott Dr., Sandy, Utah; where friends may call Sunday 6-8 pm and Monday one hour prior to services. Interment Tuesday at the Monticello City Cemetery.

Doogie's Funeral in Utah, Memorial in Arizona

2009-06-04T13:03:00.000-07:00

Doogie's funeral is tentatively scheduled for Monday, June 8 in Sandy, Utah. A memorial will be held in Queen Creek, Arizona on Saturday, June 13.

I will post details later.

Our son-in-law Doogie

2009-06-02T14:26:00.001-07:00

By now most of you have heard about our son-in-law Doogie's accident on Memorial Day. He did well for several days. Valerie and his family were with him since shortly after the accident and got to spend 30 minutes with him last Saturday when he was awake and alert. He could not speak, but he was able to communicate with them. Since then he has been unresponsive. An MRI was done late Monday night.

He has had a massive irreversible stroke. He will not recover. Doogie is an organ donor. Organ recipients are on their way to Chicago at this time. They and their families are experiencing the mixed emotion of rejoicing for their opportunity and sorrow for our loss. Doogie will be able to provide extended life for some and improved life for others.

We love Doogie. He was blessed with a brilliant mind. He could fix anything and enjoyed helping those of us that were less skilled. He was blessed with three beautiful children who loved him. He was proud of his boys, loved taking them places and told stories about the things they said and the things they did. Doogie bought fingernail polish for his daughter. He painted her finger and toe nails every week. He and Valerie loved to travel and had wonderful vacations together. Doogie lived large. He has many friends that he loved. He will be missed.

Good Things are Happening

2009-05-23T15:42:00.001-07:00

Steve got his 2nd Chemo a week ago on Friday. He has tolerated the treatment very well.

Our favorite Dr. told us that Steve's symptoms will improve as the lesions shrink, but that the progress would be slow. So far, Steve has been experiencing less intense headaches AND his left hand is not as numb in the morning when he wakes up. The numbness returns within an hour, but we feel hopeful that something good is happening.

My brother Ken has come to visit for a week. He has come at a great time.

Our children have gone the extra mile. Bret had taken most of the responsibility of staying with Steve daily while I went to work this last week. Sarah and Valerie have been busy with end-of-the-school-year schedules last week and this coming week. After this week, Sarah, Valerie and Bret will work together to be with Steve, but this week was a busy time for everyone - that is when brother Ken came to the rescue.

We appreciate all your prayers on our behalf - we have angels (heavenly and earthly) all around us.

I thought I took a week off to help Steve get settled into a schedule but....

2009-05-14T17:03:00.000-07:00

I thought I took this week off to help get Steve settled into a schedule, but ended up spending most of my energy trying to get him scheduled for Chemo.

Monday:
Called Dr. H's (Oncologist) office to schedule Steve's Chemo - had to leave message - voice mail says they will call back in 24 to 48 hours - chill runs down my spine - at this rate we won't be able to schedule Chemo for a long while.
10:00 nurse came, changed dressing on Steve's pick line, took blood, trained me to flush the pick line.
I decide to floss my teeth and break a tooth.
Went to my good friend and excellent dentist to check it out - I need a crown.
V calls from Dr H's office calls and says they have to get orders from Dr. H then get insurance approval before they can schedule
Tuesday:
V from Dr. H's office calls. They have the orders, but have to get insurance approval before they can schedule. I call City of Mesa Benefits Office. Approval can be given usually within a few hours. Called Dr H's office and left message.
9:30 Occupational Therapist an hour late and calls to say we are not at home. Oops - she is at the wrong house.
Also at 9:30 Speech Therapist arrives. OT and Speech evaluate Steve.
2:00 Physical Therapy
Finally a call from V. They cannot schedule until their financial people get approval.
And by the way, we are Dr. R's patient not Dr. H's patient. I explain we saw Dr. R when hospitalized last September, but Dr. H treated us at the hospital in April and developed the treatment plan. So sorry - but the "computer" says we are Dr. R's patient. We tell V both Dr.'s are good - can we schedule the Chemo? V cannot schedule us - she works for Dr. H.
Dr. R's staff will need to call us to schedule.
Wednesday:
Go to our family doctor. Steve comes close to falling twice. Once on the way into the building and once while walking back to see the doctor. We get 9 perscriptions.
Call and leave message again about scheduling Chemo with Dr. R's staff. Recieve call from Bonita (with Dr. R) asking if Charlotte has called to schedule Chemo. I tell her no. Bonita says Charlotte will be calling.
Steve falls, but luckily slides between some furnitue and does not hurt himself. It is the old balance issue.
Thursday:
Finished crown prep at dentist.
9:00 Occupational Therapy
9:30 nurse changes pick line dressing
10:00 Pysical Therapy
Early afternoon: No call from either oncologist. Sooooo....We drove to their office in Scottsdale. Amazingly, within 30 minutes, they found the orders, verified insurance, and now have Steve scheduled for Chemo tomorrow (Friday). The staff is confused because the "Orders" are written by Dr. H, but the "computer" says we belong to Dr. R.

At least we are scheduled.

An Interesting Week

2009-05-09T20:35:00.000-07:00

Steve is home. I will admit to being worried about bringing him home. He has never come home when he wasn't walking independently. He is gaining strength, but remains weak on his left side and has balance problems. The Rehab therapists trained me to help him. We are doing better than I expected.

We have entered a world filled with safety equipment. Steve uses a walker with someone following to help his balance. We have a wheelchair if we have long distances. Did you know that you have to take off the back, remove the seat and both legs rests before folding a wheelchair to get it into a trunk? We have a wheel chair ramp (built by our good neighbor, Henry Yost - he even went the second mile and painted it to match out home.) We have a variety of support rails and have rolled up the carpet in the family room to prevent falls.

On Friday (congratulations to Jeff & Roxy - sorry we missed your wedding), Steve was scheduled to be released from Rehab and then have "OUT-patient" Chemo. Steve was transported to the Chemo Tower in the hospital to receive Chemo. The nurse started to "check us in" for "IN-patient" Chemo. "In-Patient" procedures have to be preapproved by insurance or the entire cost is due by the patient (that would be us paying lots of $$$$$). So after many calls, Steve did not receive Chemo Friday. But he did come home.

We learned this week:
Steve will receive six Chemo treatments each three weeks apart.
The next MRI will be four weeks after the next Chemo.
Steve will be receiving Physical Therapy, Occupational Therapy, and Speech Therapy at home for four weeks.

:-) Steve got to come home for the day :-)

2009-05-02T20:35:00.000-07:00

Rehab gave Steve a "day pass" today. Patients can do whatever they feel like they can handle. Steve's roommate went to a ball game last week. Steve wanted to be in his home. He has been gone a looooooooooong time (hence the lack of beautiful flowers in our front yard). He entered the hospital on April 2.

Family came over for lunch and then we had a quiet afternoon. Mainly we sat and smiled at each other. It was a very good day.

Things have leveled off...not much new

2009-04-26T16:31:00.000-07:00

I will be posting less often - I am thinking once a week. Steve's health is at a wait and see point.

The doctors do not have a specific protocol to follow because of the lack of diagnosis. At this point they are planning a second chemo treatment in a few weeks.

The next major hurdle will be the next MRI that is not scheduled at this time. The MRI will tell if the chemo is working.

Currently he will be in Rehab to get him ready to come home.

We request you keep praying for us. Steve has requested that you specifically pray for the numbness on his left side to subside. We continue to pray for a healing miracle, but Steve finds the numbness is particularly irritating.

Rehab is helping

2009-04-24T17:25:00.000-07:00

Rehab is helping Steve. He is happier being busy. He is building his strength and learning techniques to help him retrain his brain to compensate for the loss of sensation on his left side. Another benefit is that the stronger he is for the next chemo the more quickly he will rebound from its negative effects.

On the down side, if he does over one hour of therapy he tends to be overly tired. They are breaking up his schedule into smaller units giving him time to recover between sessions.

His schedule has been something like this:
Eat breakfast
Occupational Therapy: half hour
Physical Therapy: one hour
Sleep: 3 hours
Eat lunch
Occupational Therapy: half hour
Physical Therapy: one hour
Sleep: 3 hours
Eat dinner

Steve has been transferred to Rehab

2009-04-22T12:08:00.000-07:00

Steve will be in rehab for several weeks. We do not know how long. The therapists meet weekly to evaluate progress.

Steve did OT (occupational therapy) and PT (physical therapy) this morning and is exhausted. He did very well and they predict that he will be able to get back to his pre-steroid strength.

The oncologist has been gone for a week. We do not have the MRI/Chemo plan at this time.

We continue to hope.

Steve is Bored!!!

2009-04-20T17:07:00.000-07:00

I am so happy that Steve is bored. This tells me he is getting stronger. He is tired, has a persistant cough, and is achy all over, but he is better than his low point a few weeks ago.

The doctors are elusive in their comments (because of no precise diagnosis), but my best guess from their best guesses is that he will be in the hospital for 2 to 5 more days, then he will go to a rehab center for an indefinite time until he is strong enough to do basic daily tasks.

The next MRI will be 4 weeks from Chemo. This type of Chemo's effect peaks at 2 weeks after administration and by 4 weeks the MRI results should show changes. The decision will then be made whether to repeat the Chemo at that time.

Do NOT eat high fat foods after chemo

2009-04-19T15:14:00.000-07:00

Steve has tested the suggestion that he avoid high fat foods after receiving chemo. On Saturday and today he had lunches that sounded good.

KFC + bacon cheeseburgers = :(

He has concluded that the pamphlets are correct. You really should NOT eat high fat foods for a while after having chemo. Bland food does not taste as good, but works much better at this stage.

Overall, Steve must be feeling better. He is starting to have cabin fever. He was too sick to notice until the last few days. This morning we got a wheelchair and took a tour around the hospital and went outside. It felt good to be in the sun for a few minutes.

Saturday Morning

2009-04-18T09:38:00.001-07:00

No nausea from the chemo to report.

Steve is much better this morning. He can roll over without help. He sat up for an hour in a chair. With help from the physical therapist, he walked about 30 feet.

Whether it is the chemo working or being off of steroids for three weeks - or a combination of both - we are excited to see improvement.

The physical therapists have been encouraging Steve to get up and sit in a chair every day. To stay up for 15 minutes was difficult earlier this week. When we checked in to the hospital 2 weeks ago, Steve's left leg would not support him. We are excited to see improvement.

Finally we get Chemo

2009-04-17T10:48:00.000-07:00

This morning Steve received a PICC Line. The Chemo should be administered today.

I would never have thought a year ago that I would be excited for Steve to be receiving a poison.

Steve will do one dose of chemo. If all goes as planned, he will stay in hospital up to a week longer, then go to a facility where he will do 3 hours of rehab per day to get ready to come home.

After 3 or 4 weeks he will do another MRI to determine the next step in treatment.

No Lymphoma found in LP

2009-04-16T08:20:00.000-07:00

The cytology came back with no lymphoma.

We will be transferred to the Chemo floor today and hopefully start the treatment today.

Everything takes so much time. I wish I could do it all myself. I have a sense of urgency and want the staff to drop everything and start treatment now.

Having said that, I must also add: The hospital staff is wonderful - patient and caring. They work hard for all their patients - not just the most kind, thoughtful, hard-working, loving, talented, amazing patient they have.

waiting, Waiting, WAITING

2009-04-15T16:42:00.000-07:00

No results today. We continue to wait and continue to be anxious for the results.

It is difficult.

Are the lesions growing? Are new lesions developing?

We wait and we hope.

No Chemo until the LP results are received

2009-04-14T19:46:00.000-07:00

The doctors have decided to wait until the results are back from the LP before doing chemo.

We are learning patience.

Monday, April 13, 2009 - No Chemo Today

2009-04-13T14:33:00.000-07:00

A Lumbar Puncture (LP aka Spinal Tap) was done this morning. They are trying to collect abnormal cells to get an accurate diagnosis.

The initial results show slightly high protein counts - which can be caused by lymphoma or demyelinating disease.

The complete results will be available in several days. The lab spins the fluid, collects the cells, puts them on slides, then reads the slides.

No Chemo today. The discussion today is: Would the treatment be the same or different based on the results of the LP? Should the chemo be started before getting the LP results or wait two days for the results?

Steve is weak - he cannot sit or stand by himself. His left side where he has experienced numbness since last September is weaker than his right side.

Steve and I are strengthened by your prayers. Thank you.

Chemo on Monday or Tuesday

2009-04-11T08:17:00.000-07:00

Steve is doing better.

They plan a lumbar puncture on Monday morning in the continuing quest to have a diagnosis and will start the Chemo on Monday or Tuesday attempting to stop whatever is growing.

Hopefully we will have an uneventful weekend.

Happy Easter

No Chemo until next week

2009-04-09T20:50:00.000-07:00

The doctors all agreed that the blood clots (one in each lung and one in his left leg) need to be resolved before they start chemo. They feel he is too sick to start treatment.

His sodium levels are too low. He has been placed on a high sodium diet. Bring on the chips!!

And ye cannot bear all things now; nevertheless, be of good cheer, for I will lead you along. The kingdom is yours and the blessings thereof are yours, and the riches of eternity are yours.

D&C 78:18

A Bumper Sticker

2009-04-09T15:30:00.000-07:00

A bumper sticker I saw this morning on the way to the hospital:

The most important things in life

are NOT things.

I've seen it before, but it means more today.

April 8, 2009

2009-04-08T16:46:00.000-07:00

The doctors reviewed the latest MRI. There is a new small lesion in Steve's left frontal lobe that has formed since mid March.
They also found a clot below Steve's left knee and some clots in his lungs. His hemoglobin is low and they will be giving him 2 units of blood this evening.
The debate today is whether to start Steve on Cytoxan tomorrow or wait a few more days for him to get stronger. Because of the new lesion, the neuroimmunologist wants to start asap. Cytoxan is a generic chemotherapy that is used for both demyelinating diseases and lymphoma.

I am praying that the doctors will be inspired to know the best action to take.

April 7, 2009

2009-04-07T16:45:00.000-07:00

Valerie suggested I start a blog about Steve's health. Steve is loved by many people who are interested in how he is doing, but don't want to disturb us by calling.
I follow several blogs - Sarah and Veronica have blogs - Grandson Josh - Margaret's blog - NieNie, CJane.
I enjoy them all.

Thank you for caring and for your prayers.

Steve is back in the hospital. They are trying to get his body stronger and even out medications, before starting the next treatment - as yet undecided. They are still debating lymphoma vs demyelinating disorder.

February & March 2009

2009-04-07T16:23:00.000-07:00

After the February MRI, Steve started taking dexamethasone (super steroids) for 3 1/2 weeks to hopefully reduce the lesions. He gained 40 lbs. and got weaker each week. It was awful!! And after another MRI in March there was not significant change in the lesions.

This picture was taken March 24, 2009 when our granddaughter Natalie was blessed.

Quite a difference from last summer.....

Jacob, Veronica and their girls left on Saturday, March 28. Steve enjoyed having all the family fun, but was exhausted. I expected him to bounce back as he got off the steroids and rested. He continued to feel more exhausted.

For those who have not heard

2009-04-07T15:47:00.000-07:00

In early August 2008 Steve & Bret went on a 10 day cruise to Northern Europe. This picture was taken on formal night. A GQ guy in my opinion.

On the way home Steve passed out on the flight. We do not know if it was fatigue or related to his illness.

In late August 2008 Steve was having some symptoms that made us think he might be having heart problems. Many tests were run and it was determined that he had a great heart, lungs, etc, etc, etc. Then they did a MRI and found several brain lesions, with one particularly large lesion in the pons region of his brain stem.

In September 2008 a brain biopsy was done that was inconclusive. There was necrosis (dead tissue) and T cells. The debate was lymphoma (cancer) vs demyelinating disorder (in the Multiple Sclerosis family).

A follow-up MRI was done in November 2008, the lesions were slightly larger and the doctors decided a second brain biopsy needed to be done. The surgeon took five samples (two is usually the max) and did get some diseased tissue. Again the pathologist found NO cancer cells. The diseased tissue showed severe demyelination.

Soooooo, in December Steve started a treatment for MS related diseases - Beta Seran. In February 2009 Steve had another MRI and the lesions were larger and had spread to the mid brain.