Until we meet again...

Dad would have been 68 today. He was born August 14, 1945, the day the war ended. His birth was a celebration of hope and all things good. He did not disappoint. His was a life well lived.

In celebration of Dad's birthday the kids wanted to tie balloons to a birthday cake and send it to Papa. Kolt's main concern was that the candles would blow out before the cake got to him. I am so lucky to have these three amazing kids as a reminder of how blessed we are. They always seem to know when I need some cheering up. I look at them and know that Dad lives on. We miss you Papa...every minute of every day.

I have visited this blog numerous times knowing I should write something, anything. But, the words don't come, and the blank screen stares back. Reading past posts I am reminded of how hopeful we were. It literally makes my heart ache. This is not the outcome we had prepared for. 

But, along with the sadness and loss comes a deep sense of appreciation. We are blessed to have loved and been loved by such a great man. We have an amazing support system and a strong family. We won't give up on faith or hope and we will never forget the life that he lived or the lessons he taught us. 

The overwhelming show of support and outpouring of love we have received these past five months has been a tremendous source of strength for all of us. We are truly blessed with amazing family, friends and loved ones. My beautiful cousin Lainie sent me this quote. I couldn't think of more fitting words to describe him; 

"To laugh often and much; to win the respect of intelligent people and the affection of children; to earn the appreciation of honest critics; to appreciate beauty, to find the best in others; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to know even one life has breathed easier because you lived. This is to have succeeded." – Ralph Waldo Emerson

Dad was a success in all areas of his life. That's not to say he wasn't without fault. He was passionate about the things he believed in and worked hard at being his best self. It has been overwhelming and humbling to realize the scope of his caring and love for others. He has touched and made an impact on many lives. People truly love him. I have always been proud to be James B. Smith’s daughter. I have an even deeper appreciation for it now.  

I'm not sure if anyone still reads this blog. But, it's a chapter I feel I need to close. To all of Papa Jim's army I want to thank you for your love and support. We couldn't have made it through this journey without you. We are forever grateful for our amazing support system.

As for the blog...I suppose it will ride off into the sunset. Happy trails, until we meet again. 

Papa Jim's Army

Liberty Days honored Dad at their 4th of July celebration. This was the t-shirt. Dad was instrumental in getting fireworks for the Liberty Days July 4th celebration, among other things. He loved Liberty and the wonderful people who live there.  It will always be home.

The Miss Rodeo Utah organization inducted Mom and Dad into the Miss Rodeo Utah Hall of Fame. What an amazing honor. 

The Ogden Pioneer Days Foundation surprised our family with a tribute to Dad and unveiled this beautiful stone dedicated in his honor.  They placed it in the garden area of the hospitality cabin at Ogden Stadium. 

Here are a couple beautifully written tributes:

http://www.standard.net/stories/2013/03/11/remembering-jim-smith

http://www.standard.net/stories/2013/03/06/community-mourns-death-cowboy-legend-jim-smith

Obituary:

http://obitsutah.com/obituary/18747/james-jim-bert-smith.htm

Roller Coaster...

So much has happened since the last post, I am not sure where to begin. 

Dad received some more donor marrow. After which, another biopsy was performed. It revealed that the Leukemia levels were lower but the Drs. did not feel like they had dropped enough. They decided it was time to help Dad’s new bone marrow start to fight. They gave him medication to initiate graft versus host disease (GVH). 

GVH targets many things including the organs, skin, mucous membranes and gastrointestinal tract. It is a gross understatement to say patients get “sick” with GVH. Mom tried to keep him at home for as long as she could but after a couple of bad scares we knew it was time to take him back to the Huntsman where they could monitor him better.

A few days ago he took a turn for the worse.  We have since learned that there was a mess up on some medication he was administered and this is what sent him downhill so quickly.

At the first of this week they decided to do another bone marrow biopsy.  Good news, the levels are very low and have decreased significantly.  They were pleased with the results.

Today he received some dialysis to help his kidneys flush out some of the toxins. He will have another round tomorrow. The plan is to start him on EPC therapy.  This will slow down the GVH and help his white blood cells to stop attacking. 

They have warned us that this will be a long road ahead and there will probably be some more speed bumps along the way.  It will take some time before he starts to feel better and he will be at the hospital for an extended period. 

He is a fighter and after all that he has been through we refuse to concede to this latest setback.  

Speed bump...

Dad went to his Dr.’s appointment a few days before Christmas.  His counts were low.  They wanted to keep him.  He said no.

The Lymphoma is gone.  Unfortunately (big sigh), sometimes the treatment for cancer can cause other problems. He is now battling AML Leukemia. 

Dad talked his Doctor into letting him be home for Christmas.  It was a nice Christmas with all of us together.  He checked into The Huntsman for a five day stay and more rounds of intensive chemo.  Then it was back home to ring in 2013.

It has been a rough time.  His counts are low, he has no immunity and the medications and chemo make him sick and frustrated.  His pic-line has been causing him some soreness.  Yesterday Mom was worried about a possible infection so she has taken him back to The Huntsman and they have admitted him.  They want to keep an eye on him for a few days.

Dr. Glen has kept him in her care and together with the amazing team of Doctors at The Huntsman they are figuring out what will be the best treatment plan.  He eventually will receive another bone marrow transplant.  Good thing the donor had plenty to give.  All the nurses in the BMT unit were sad that he was back but were so happy to see him.  He is a favorite.  He makes an impact where ever he goes. 

Cancer is a journey, both medical and emotional.  My hope is that we will be able to begin a new journey soon, one without cancer.

The Important stuff...

As Christmas quickly approaches and the end of another year draws near I can't help but have a deep sense of appreciation.  So many things to be grateful for.  One being that we will spend another Christmas together with family.  

 

Dad has been doing great.  His doctors are happy with his progress and although they still detect cancer cells they are very positive about where he is at.  They are talking about giving him another “boost” of his donor’s cells and have started weaning him off of the anti rejection medication.  They want those good cells to work a little harder.

 

He has been coming into the store and has been helping me out in the afternoons by picking Kwade up from school.  Something time wouldn't have permitted him to do before he was diagnosed.  We have all learned a little about time and the importance of it.  I don’t know who looks forward more to their afternoon drives, Dad or Kwade.  Dad has even talked about having his hearing checked because, “sometimes Kwade is hard to hear.”  I am sure he gets an ear full of the days adventures from an imaginative seven year old's perspective.  These are priceless moments.

You hear people talk about a person’s legacy or how to create their own.  I've always associated the term legacy with a persons passing.  I have come to understand that legacy isn't about death and dying.  It's about life and living. It's about making connections and sharing precious moments with the special people in your life.  Thank you, stupid cancer, for the life lessons.

Wishing you all a very Merry Christmas and an amazing 2013! 

Pressing onward...

Hello! Is anyone out there? Yep, it’s me the slacker, a.k.a the Jack of all trades, the master of none. Yep, I’ve been neglectful of this little blog and I apologize. It’s not that I don’t care, I just run out of time. And, quite honestly, not much changes from day to day.

So here is the short of it. Dad is doing well. At a 100 days post transplant he received more tests, scans, biopsies, blood draws etc. etc. They are still detecting the “abnormal cells” that were present prior to the transplant but feel confident that he has fully engrafted. That is good. Hopefully those healthy donor cells will engage a little warfare on the bad cells.

His counts have been good and his immunity has stayed up. All steps in the right direction. He still needs to avoid large crowds, the sun, dust etc.….basically, he needs to stay in his little bubble. He has a hard time with that. 

Cancer is no party…but being a fighter and surviving is something to celebrate!

Blessings...

Dad is home. He made his great escape on Father's Day weekend. A very nice surprise for all of us. The Doctor’s orders are that he stays in an apartment close to the hospital. So much for Dr.’s orders. He finds comfort in being at home and Mom keeps vigilant watch over him.

His counts continue to grow and build. Things look good. He doesn't feel 100% and still tires easily. Other than being a little thin he looks great and the color returned to his cheeks much faster this time around. 

Life is good, we are blessed. 

Bratwurst anyone?

It will be two weeks tomorrow that Dad received his infusion. He is doing as good as can be expected. He is unable to keep much of anything on his stomach; his head feels like someone is trying to drill a steel rod through it and the hospital walls seem to be closing in on him. Yep, as good as can be expected.  

The great news is that today’s blood tests revealed that engraftment has begun.

Long story short…it’s working. Short story long…the donor stem cells have traveled to the bone marrow and have begun to produce new blood cells.  New healthy, cancer free, blood cells.

We won’t be told the identity of Dad’s donor until a year after the transplant. However, they did tell Dad that the t-cells came from Germany. If he starts to develop a strong desire for Bratwurst I will happily oblige him with a full plate.