December 30, 2013 Happy New Year!!!

Christmas Holiday has been wonderful.  We have been able to spend time with all our children, and grandchildren.    Ron was able to sit on Santa's lap!! So cute! 

Lauren and Logan took the girls Ice Skating!!!

Chase and Kaylee seeing the Lights

Daddy Daughter Date/shopping trip  

Grace got an easy bake oven

Emma got a sewing machine

Ron tried to relax! 

Grace Loves Logan and is very delighted to be with him:) He is a great Uncle!! 

The Girls are showing what it is all about LOVE!!!!

It was a wonderful holiday and we truly have much to be thankful for.  So today is another day! 

We got up this morning with plans to go to meet with the doctor about the radiation for the tumors that have grown, and find out what can be done for them.  As we were about the leave we got a call from Dr. Agerwal's office telling us that his labs were not all good and they wanted him to stop by their office to do some test before he went in for his other appointment.  When we got there we found out that his Erythropoietin count was high, how high you ask?  Normal is 4-27 Ron's was 162 yep that is pretty high.  His Hemoglobin has also been steadily rising the last few labs he has had done.  So they wanted him to go to the infusion room and not give him more blood, but take blood out.  It seems that his blood is getting too thick and they are afraid of possible blood clots.  

So we first went to the radiation doc.  His lymph nod under his arm is getting much larger, as I have said and so they do want to radiate it.  The other tumors are still small enough that they just want to wait and watch them and pray that they don't grow any more.  He will be going in for more mapping for the lymph nod on Thursday and then the following week he will begin radiation on that.  This is a every day procedure for 3 weeks.  Can we say YUCK!!! But we will do what we have to. 

Then it was up to the infusion room to have blood taken and fluids put in.  This was I thought going to be an easy thing to be done.  Boy was I wrong!  They first of all could not get a vein! They took 3 times to finally get the first IV started.  When they had that done they have to do the blood draw from a different vein.  That was when things really got difficult!  They had a hard time finding a new vein to stick and when they finally got it to start giving blood Ron had an anxiety attack, as well as almost passed out on them in his chair,  and then the vein quit giving blood.  Needless to say they got 1/4 of the amount of blood that they wanted to get out, and Ron gets to go in again on Thursday to try and do it all over again.  So all I can say is Prayers are welcome on his behalf.  This for me has been one of the hardest days yet.  And I know that it was very hard on Ron too.  He is now sleeping soundly and I am so thankful for that! 

So even though this has been a very trying day, we know that there will be better days to come! Elder Neal A. Maxwell said this, "Faith in God includes faith in His purposes as well as in His timing.  We cannot fully accept Him while rejecting His schedule.  We cannot worship Him but insist on our plans."  

We truly know this to be true, and so we will stick to The Lords plan.  But any prayers I'm sure will not go unnoticed.  More later. 

FIGHT FIGHT FIGHT 

Giving Back…. Dec. 23, 2013

Today was an amazing, most wonderful day!  Our son-in-law Preston was given an assignment from his work to take $100.00 and do a service project with it.  He was then to report back.  He was given the money at the first of December.  He decided after watching all that Ron had been through that he wanted to do something for the people at the Huntsman Center.  He posted on Face Book as well as announcing his project at his ward.  Word got out and donations came in.  His desire was to put together around 15 "kits" full of things that would bring comfort to the patients that are in the infusion room as well as the IL2 floor.  He was overwhelmed when money as well as many items began showing up at his house.  In the "kit" he wanted to include a blanket, cozy socks, rice bag, hat, chap stick, lotions, cd, dvd, crossword puzzle book, pen, notebook.  All tied up with a big Christmas bow.  Also included in each kit was a special note from the children in their primary with words of encouragement on it.  As the month went on more and more donations came in.  Needless to say his plan to have 15 kits turned into a whole lot more.  When all was said and done he had 50 completed kits along with a big box full of extra supplies, to give to the hospital for whoever they felt needed them.

Ron and I went with Lindsey and Preston today and helped deliver them.  It was a fantastic Day.  We are so thankful to Preston for his thoughtfulness.  What a great way to give back!!

Here are all the kits before we begin to deliver them:)

Ron talking to one of the nurses at the infusion room

Lindsey, One of the nurses Tawni, Ron

Preston delivering the "kits"

Ron and Joan, She is Dr. Agerwals nurse and the main nurse who took care of Ron through out his IL2 treatment.  She is a wonderful lady! 

Joan, Ron, and me

Ron and Preston in front of the kits we left for the 4th floor paitents 

What a great Day!! 

Ron felt good and it was so great for him to come and feel like he was able to help others, when he is  being helped so much himself.  

The girls got to see the "Real" Santa 

My Favorite picture of the year!!! So Sweet!!!! 

Merry Christmas EVERYONE!!!! 

December 19th 2013 updates…...

Well as usual it's always a mixed bag of good and bad.  I will start with the good first.  I could copy the report and all the big words that are in it, but, as we were sitting in the doctors office today I asked him to read it to me, he laughed and said, "it means his lungs have improved a lot!!" His liver is also "stable" which is a really good thing.

Now to the not so good.  Here is the big words, the soft tissue mass in the right axilla has enlarged.  Which means his lymph node on the right side has grown, from 2.5 x 3.3 to 3.4 x 4.6 cm this is not a good thing.  There is a new growth on his right hip, as well as the adrenal on the kidney has grown.  So what to do??? More Radiation!!! We will be meeting with the radiation doctor to discuss having radiation on the three places that have grown.  All the radiation that Ron has done thus far has worked! So we have no reason to feel that it won't work again.  It will be more meetings with more doctors more appointments and more, more, more.  But it also means that we can and will continue to fight! Our doctor was very optimistic as to what has happened to Ron.  Of course he would like to give him all good news but feels that the IL2 did some good and we will continue to fight the rest in the best ways possible as we go forward.

We have a wonderful family friend who sent us a beautiful Christmas message that I feel is exactly the way Ron and I feel about this journey that we have been on for this past year.  I hope they will not mind me sharing part of their message with you, It is from Elder John Groberg and he said this, "Enos was strong physically.  the "healing" he received was the most important of all a "wholeness" of the spirit.  That is our quest also.  In this life some are healed physically and some are not.  The Lord knows what is best for our spiritual healing.  Everyone, including those "healed" here, eventually dies. God has promised that in the resurrection our bodies will be made "whole" by being "restored to their proper and perfect frame." (Alma 40:23)  However, the "wholeness" of our spirits that part of us that thinks acts, over and forgives depends upon the faith we have developed in Jesus.  As we celebrate His birth at Christmas time, we hope that all of us will continue to develop ever stronger faith in Him."

We have so much to be thankful for this holiday season.  We could not ask for more! We love the gospel of Jesus Christ.  It brings such peace and comfort to us in our trials of life.  We know that all things are possible through our Savior Jesus Christ and all is according to his will.  We will continue to fight, as long as we can.  Knowing that we have the greatest blessings given to us, our love for each other, our dear children, their wonderful companions and 3 precious granddaughters our lives are full of gratitude for all we have been given.

FIGHT FIGHT FIGHT

Friday the 13th December 2013

We have been having lots of good days and yes some bad days! But Ron makes the best of them all.  .  We had a wonderful Thanksgiving and have been preparing for the big Christmas Day.  The kids have been coming and going, and we look forward to Logan and Lauren coming the day after Christmas.

Some of the fun things we have been able to do this holiday season….

Traditional dinner with our good friends Mel and Vivian Hill

Always a good time! 

We took the girls to see Frozen.  It is a darling movie and we liked it as much as the girls!!

Ice cream by the fireplace while wet hair dries, as it is snowing outside!!

Maggie just loves her pop and won't leave his side!!!

The Highlight of my holiday has been the blessing of going to see and hear the Mormon Tabernacle Choir concert they do each Christmas season.  It is very difficult to get tickets for this.  You have to send in your request and then cross your fingers that your name is chosen. They notify you by e-mail and you can only request 4 tickets.  They do 3 performances and they are always sold out.  So of course I tried to get tickets this year and was not so lucky! But Lindsey also tried and she got them!!!! I was so excited when she asked if Ron and I wanted to go with her, of course we did!!! Then the next trick was for Ron to feel well enough to go.  Turns out the concert started at 8:00 pm which is about the time Ron is going to bed these days! But he was willing to give it a try! I know he did it just for me because he knew how I wanted to go.  We  made it and it was as wonderful as I thought it would be!!!

Ron and I waiting the concert to begin:) 

Just a bit of info on the concert.  Deborah Voigt was the guest singer.  She was amazing!!! I'm not a real opera fan and I think she may have changed my mind she was so wonderful!!! Loved every minute of her songs.

They also had John Rhys-Davies who told the story of Dickens Christmas, and then told the story in Luke 2 of the birth of the Savior so good!!! Just a most wonderful evening!!! Ron enjoyed it as well which really made me even more happy!!

They also had an organ solo which was so amazing I can't even begin to describe it!! If you can't tell it was a really great evening!!

Me and Lindsey waiting for the concert to begin

Ron, Me, Lindsey, Preston

My sister was able to get tickets too:)

Back to reality…. Ron getting his infusion….

Well it is Friday and when we get home we will have 3 little cute girls waiting for us:) That always makes us happy!!  Ron will have his CT scan next week.  Then we will see if the drug he has been on has worked or not. It will be a very telling day as always.

We are so blessed, and very thankful for all the Love and support that we get from so many people!!! Thank you for all the support.  We will continue to fight and pray that we will find the right treatment for Ron.  And thank everyone for their continued prayers!!!

FIGHT FIGHT FIGHT

Thanksgiving etc… December 6, 2013

We had a fantastic Thanksgiving! The WHOLE family was together i.e. our children and their spouses, along with our 3 grandchildren.  Needless to say a full house of fun.

Ron is feeling ok.  Pushing through the hard days and doing the best that he can.  He goes in next friday the 13th for his monthly infusion and then he will have scans and meet with the doc on the 19th. That will be another very telling day as to whether or not the new drug has been working on Ron's behalf for the good or not.  We continue to pray that he will  be granted some relief and some good news.  But we also have stopped holding our breath when the doc comes in the room.  We know that we are being blessed in ways we don't even know.  Thanks so much for all the many prayers on behalf of Ron.  We are enjoying this holiday season! And hope that all will have a very Merry Christmas.

 I will post more when we have results:)