Kids School programs

Its always fun to go to the kids class performances and see them in their class setting.  Stetsons class did several Christmas songs and then little Christmas poems.  You could tell he was really enjoying himself. 

Tenlies first grade put on a program about Christmas around the world and told us how other countries celebrate Christmas.  Its so fun to see how much she is learning.

The Nativity

December 10

So Cody's Uncle puts on a live Nativity in Alpine every year and this is not just a nativity this is one they have put much much effort into.  It is as if you were reliving the entire thing.  If you have not seen this I highly recommend you putting it on your calendar for this year.  They have it in one of his neighbors yards which it contains several acers.  You feel like you are walking through Bethlehem. We tarted off riding in a horse trailer to get to the nativity.

Then you took the path up to the Camels.

There was roman soldiers on their horses and donkeys along the path also.  The kids took a minute to feed one of the donkeys.

Then you entered a barn which was set up like the old town of Bethlehem.  In here they had different places along the way.  Women weaving with wool the men sawing logs and a bakery where they were baking their bread.

I didn't get a picture of Mary Joseph and baby Jesus. 

We were then off to the hot chocolate and visit around the warm fires.  I believe this will become a family tradition for the kids really got a lot out of it.

First sign of the side affects

Well the side affects have started to begin.  As you will see in the photos his skin has taken on the rash to its fullest.  His feet are in lots of pain for the bottoms of them keep peeling away.  They are cracking and sometimes bleeding.  We keep coconut oil, lotions on them all the time.  His favorite time now is just soaking in a tub with coconut oil.  for most of us we would come out feeling like we are caked in grease, but for Cody he comes out still felling dry.  His skin flakes off all the time like you you would after a really bad sunburn.  Hes very sensitive to even people touching him.

As you can see in these pictures his face was to no exception.  It was one of the worse places that was affected.  It looked like he was a teenager again with extreme acne.  He has been extremely self conscious with his looks.  He hates when people look at him and he can see the reaction on their face.  Its little white blisters that look like pimples all over and they can pop by just touching them.  They are very sensitive and when they do pop they start to bleed. 

His chest and back were covered with the same white blisters all over along with cracking skin that can be very sensitive.

Starting chemo at Huntsmans

December 7

Well today is the day Cody starts the Trial drug.  As much as we are going to miss the group down in Provo we hope and pray that this drug will help him in his journey.  Cody is the first patient to enter this trial not just here at the Huntsman Cancer Hospital, but around the country.  They have a possible second candidate in another facility, but as of right now he is the only one.  I guess we can look at this several ways. 1. He will have everyone attention focused on him or 2. Are we just nuts going into this will out knowing the true side affects. 

The one thing we do know is the facility up here is very nice.  As you can see every patient gets their own recliner chair with their own T.V.  

We were so grateful to get started on something this past month Cody was driving us all nuts.  I think the not doing anything to treat his Cancer was driving him nuts.  He knew we had to do the wash out time, but he was going crazy.  I was about to tell the Dr. that if we didn't get started with something soon then hook him up to just saline and tell him that its chemo haha.  No I couldn't even imagine what he is going through. 

Well now the journey begins.  fingers crossed that things go well and this will help the journey along.

Family Pictures

November 23

So this year we decided that it had been a long time since we had a family picture done on the Jones side and we felt that this was going to be the best time to try and get one done with Corie and her family moving to Nebraska and Cody was feeling and looking really good.  I was pleased on how they turned out.  Even if Cody and his Dad don't care to have there pictures taken.  if we can get a smile out of these two its a miracle.

We were able to get a couple cute ones of our little family.

Tenlie had several good ones it was hard to choose from.

Stetson is my little character.  He loves to pull faces and you just hope you catch it at the right time.  He definitely is the boy with many expressions.

This is the Jones clan.

Then all the grandkids with Grandma and Grandpa.

Cody with his parents and Sisters.

Codys fishing trip

So earlier in the month of November Cody was able to go and do one of his most favorite things.  If he can't make it to Alaska to go Salmon fishing the next best was Idaho.  My brother-in-law Tony had chartered a boat to take him and his sales guys out for the day Salmon fishing.  He called Cody and invited him and his dad to join their group.  Cody was so excited since he had been up there twice now and had no luck.  So I guess third times the charm.  As you can see on his face he was in the height of his glory.

Cody was having quite the luck.  He was catching them right and left.  He finally took a break and took a 2hr nap.  It still happened that he caught the most out of the guys and the biggest.

I'm so grateful he was able to get out and take this fishing trip. Since we were in the waiting period to start the trial drug this gave him something to take his mind off things and just enjoy himself.  Thanks Tony for inviting him along.

Damons IronMan

November 20

So my brother Damon was insane enough to do the Arizona Ironman. When he first told us about it I knew I wanted to go and support him in this big event.  The commitment and training this takes so you can just finish is more than I could comprehend.  

The closer it got to the race we knew there was no way my family could all go for one Cody's sister was leaving that next weekend to move to Nebraska and the money to fly us all out would have been way to much.  So we kept watching and came across a great price on air fair for I was able to fly out for the weekend.

The Saturday before the race they had the racers check in all their drop bags and bikes. He was able to do a practice swim in the canal to test the temp of the water and expo we were able to enjoy.

This is under the finish line the day before the race.

The practice swim to test out the temp of the water and get a feel for it. I say man wet suits are so attractive and easy to spot your swimmer. haha

Then it was off to bag drop and wrack your bike.  I believe my nerves would have been getting the best of me at this point, but no he was extremely calm.

Morning of the big day. This is where they left him to start off the day.  The swim started at 6:00am

The girls were such great sports that morning since they had to be up around 4:30am

And this was about all you could see during the swim.  We new he was somewhere out there.  I kept saying hes the one in the green cap and black wet suit you just decide which one. He did do really awesome in the swim though. Swim was 2.4 miles he finished that in 1:15:49 rank 883 division 140

Then off on the bike he goes.  This was set up very spectator friendly we were able to see him on all 3 of his laps which was really fun. Again he was doing extremely well in his bike which is 112 miles his time was 5:59:49 rank: 887 Division 143

And this is what we did in our spare time waiting in between laps of the bike.

Once he had completed his bike off to a marathon he will run.  He was looking really good and again very spectator friendly.  We could have seen him 3 times before the finish line, but didn't know where he was in mileage so we scooted out one lap early.  This way we wouldn't miss him finishing and we that we could get good seats.  The run was 26.2 miles and his time was 4:45:56 rank: 868 Division:141

And of course we were all so excited to see him coming up the finishing stretch we forgot all about the cameras cause we were cheering so hard for him oops no finishing picture. Good thing for camera men along the course to insure you get a picture if your family forgets. haha  He looked so good coming across the finishing line I was such a proud sister.  What an accomplishment and to do it in such great time on his first.  Finishing time 12:10:20 rank:868 Division:141

Way to go this was so worth flying out for the weekend to see only it kind of gave me the bug to want to do one. 

I made him this fun little candy bar poster to just let him know I was behind him 100% and knew he could do anything he put his mind too.

Zometa in Provo

November 17

So we didn't want to cut all ties off down in Provo so we have chose to still receive his Zometa down there.  This is his bone hardening drug.  Where this only has to run for 20 min. we thought it may be fun to let Stetson be apart of it instead of being shuffled around.  He thought he was such a big kid to be going with us.  Cody and Stetson enjoyed a movie together on the IPad.

At this point we have met with Huntsman several times and have decided to go forward with the trial drug that consists of Eurbitux and MM121 which Cody calls it Mickey Mouse 121.  The side affects are drying of the skin with a major rash that looks like acne.  Cody has to do a wash out period for 30 days before starting so I guess we have the month of November off.  We are scheduled for December 7th.

Codys Treatments

November 2

Well as for most that already know since I'm a little behind on my blog, but feel this is still very important to post for the kids to be able to go back a read so bare with me on it. 

We just found out that the last and finally drug that has been approved for Cody's cancer has now stopped working.  Where we go from here can be kind of scary.  We are having to leave our comfort zone with all the friends who we now consider family in Provo and head to the big Hospital on the hill The Huntsman Cancer Hospital. We will be meeting with them sometime this week to go over what trial drugs are out there that Cody may possible qualify for.  As he says "which one can I be a lab rat for."  Cody has not lost his sense of humor even though we can tell he is very scarred.  We are not ready to give up on this fight Its just not time.    

Halloween

Monday October 31

So this was the first year our little family didn't have a theme.  I was so excited cause I had the best cape for vampires for Stetson and he was dead set that he was going to be bumble bee the Transformer and not a vampire.  So what do you do but let them be what they want.  I will say he was a very cute transformer.

We started our day off with his parade at pre-school.  He was so excited about it.  His Teachers were so very cute as the 3 little pigs.

Tenlie was a spider Queen and I loved, loved, loved her costume.

Here is Stetson in full fledged costume.

I always try and dress to match the kids so when I had the idea of vampires I decided to revamp it a little and be a Mother spider queen with Tenlie.

We started off our night over in Lehi in our old neighborhood with my in-laws.  Cody's sister Corie still lived over there so we met up did some trick-or-treating and then soup back at her house.  The kids were really into it this year we could hardly catch up with them.  I of course forgot my camera so I didn't get any good pictures.

Then back to my moms house we went and met up with their other cousins to go around our neighborhood.  There again they were having way to much fun I couldn't keep up with them. 

Tenlies Pumpkin this year.

Stetsons pumpkin.

We could not have asked for better weather than we had.  The kids never complained of being cold.  It was a so warm it really didn't feel like Halloween.

Halloween Half Marathon

October 29

Just after this next picture was taken it was time to refuel with a GU shot at mile 9.  When I pulled mine out it had froze.  There for I was not able to get it all down before the water station and by the time I got it down my water had pretty much spilled all out.  So the side affect to a frozen Gu with very little water will make you feel like you are about tho through up.  By about mile 10 I told Michelle to go ahead and go I felt like I was going to loose it any minute.  I was so made cause we were truly rocking it on time. At mile 11 they had another water station that I was able to get some in and break that up. I tell you within minutes I was feeling so much better I didn't feel like I was going to pass out and off I went. 

Michelle came in about 3 minutes before I did so I was able to make up some time on the last 2 miles.

Other than the miner hick up this was a really fun race and I really enjoyed the course.  I was able to get my PR.

Time: 1:46:30

Place in age group: 69/552

Overall place: 511/3308

I've really enjoyed having Michelle as a running partner and look forward to running many more races with her.  We may even get Damon to do a few with us next year.

It was also fun to have our family there at the finish line cheering us on.

So I said I was going to be done after the marathon, but look who did another race. Crazy me!!  It all started out that I was going to be running it with one of my friends and I told her it just depended on how I was feeling.  I was talking to my sister-in-law about it and some how convinced her into running it with me.  When it came down to it my friend back out and Michelle and I had already registered.  So we thought what the heck its just for fun right.  We got into it and joined in on the costumes.  Michelle was a football player and I was a little pumpkin.  I know I know we are very creative. 

It was actually warmer than we had anticipated and were a little over dressed.  The run on the other hand was very pretty.  As you can see from the pictures we had a great scenic run.  Our plan was to run together the entire time and things were going great we had a great pace going.