Update 8-31

Our chemo angels rock! They send little notes, and some fun toys! WE love them! 

He got stitches. This was more drama than ALL of Chemo in a month! IT was very rough for him, I am not sure why he is normally really tuff, but he really had a hard time with this one! 

Can I tell you how PROUD their dad is they like video games! This is the first time they have got to play, and the loved it! Monster truck game of course! 

We are doing "normal" as much as possible so PRESCHOOL here comes TUFF BOY! He loves it! I love that he is able to be around other kids. 

We are hosting BE THE MATCH! We want to get 75 people signed up this is our goal! So if you are able please go to http://bethematch.org/Join/Join_the_Registry.aspx or contact me I have the kits at our house! :)

Shaken, stirred, upside down, kind of like a tornado.

I thought that after a year of this I would have it together! NOPE! I was wrong, I have learned so many things along the way, I have learned so many medical things, having hope, meet new moms facing the same thing I am. I thought we would return to a some what normal. NOPE! Our world continues to be shaken, dumped upside down, and just as we think we may have it together again, it is gets shaken and stirred again. Just when we think that things could start getting back to a new normal, things are changed once again. It is like I am stuck in a tornado, and no matter how hard I want out, I know I have to ride out the storm.  We learned Carson has restless leg syndrome and will need more medication, yay for answers, but the medication has many side effects itself, and can suppress his breathing. This is worrisome for the fact he already doesn't have a "normal" airway. I am finding along this long road, that nothing will be normal ever again. Cancer has taken my sense of security for my children. I worked so hard to build a life that I was proud of. I worked to have a house, cars, and pay my bills on time. I made my house a home, filling it with lots of love and a place that we can always feel safe. Now even at times our home doesn't feel safe. I am always feeling like there is something, someone watching us, and there is, GERMS. The smallest germs can take us and shake it all upside down once again. So with the constant worry of germs and cleaning and trying to make sure our home is a safe place, it builds. I am not sure most family or friends know how much goes into each day of my day. The cleaning, the financials,  the medications, the worrying, the taking his temp 5 times in a day and even more if he even looks like he is pale, red, or just off. Always wondering when we go to the doctors if they will say the dreaded "C" word has returned. It is reality for me. Day in day out, it feel like I am holding on to dear life with out ever knowing when it will be shaken, stirred, or turned upside down.

Update on Tuff Boy!

We went to Lagoon! What an awesome time we had! We loved every minute of it! The kids enjoyed it and so did I! 

Playing like they were in jail! :) 

We did hair cuts! Much needed hair cuts! Thanks to our Chemo Angel for the gift card! 

 The crappy medical stuff. We did a sleep study to know more about Carson's airway. I don't know that you can call it a sleep study, because we both did not do much sleeping. First off they hooked him up to all these electrode things and then told me he wasn't able to get up to go to the bathroom! Umm would have helped if they told me that before hand! Then when we turned off the lights the room was creepy. There were shadows everywhere. It took Carson forever to fall sleep. Then they woke us up at 5:30AM! WHAT We just went to sleep 5 hours ago. Insert #&#&#&^ and eye roll here!

We then headed on Wednesday for Chemo. Oh boy it was a rough day. He was not happy about going to the "long hospital" as he says. But was excited to see him Uncle Cole who was at the U of U for staph infection. We visited uncle Cole and he made sure to tell him to Cowboy Up! :) 

This started our 5 day steroid pulse! Oh help us now! Those have to be the WORSE thing of chemo! 

We had many melt downs, some over nothing, some over food, some over Blake looking at him. 

We had  a big rain storm, I was nervous to let them play in the water, but sometimes you have to live a little. 

We have the results from his sleep study... not the best, but not bad at all! He will be on Oxygen at night to sleep, and will increase his nerve medication to almost triple. He kicks his legs all night long making it hard for him to enter the REM cycle of sleep. I am sure the results would have been different if they would have let us SLEEP instead of hooking him up to 50 wires and kicking us out at 5AM! 

Amazing families helping ours.

We love the Tyler Robinson's family and TJ "hotman" Carter's family! Both have been beyond encouraging to us and we love them!  They both have taken us into their prayers, they daily lives and just over all been willing to help me as his mom, and offer words of encouragement! WE LOVE THEM! and will forever have them in our lives! 

Neet Feet

Carson has been doing pretty good! He was able to get a special present in the mail... 

His Peach's Neet Feet. :) These shoes are amazing! they were customized for him, by an artist that loves to help kids who are facing the odds. 

Like most things in life, it was short lived. A fever ended us in the ER early Sunday Morning. Of course this is all routine for us, and seems like a old hat, is that normal to say hospital's are old hats? Well in our world YES. He went with out much fight and we seen a doctor that was no so helpful to the cancer world rules. But after mamma bear coming out, and putting him in place, we got some much testing done, and were comfortable to go home. 

Just like the good, the bad is short lived most of the time as well! 

So off to Lagoon we went, even though his counts were not great, we wanted to spend some special time doing something he loved! Give Kids the World gave us a passport to visit many theme parks across the US, one of those is Lagoon here in Utah, so with Free Tickets in hand, we went! Lagoon has done some major improvements from when I was a kid, there are more kiddie rides now than before! Thank goodness because my kids LOVED it! 

Wednesday this week we start Steroids... ugh, ugh, ugh, ugh, ugh!!!!!! Steroids have a love hate relationship with us. We NEED Carson to take them; it is part of treatment, but they alter so many things in his poor kids life, his emotions being the biggest, then his leg pain, then his just place being confused, and having to take 22 PILLS on one of the days! It is so hard for 5 days, but we are thankful for them helping fight off the evil cancer! 

Oh, my friend, it’s not what they take away from you that counts – it’s what you do with what you have left.
Hubert Humphrey

We will take so many + out of this, we have learned so much! It is a hard long road, but in the end, we have to believe that we will be stronger, more caring, and most of all humble! We will be there to help others on this long hard road, we will be there to dry tears of moms who don't know what they are in for, and to show the kids life is about living, even when you did just throw up your guts! This journey is long from over, we are almost to the half way point. I have leaned on so many friends and family through this journey, and know that with out them is would be so much more for me. we have to take the + out of the situations!  

Cheyenne Baby!

What an amazing opportunity we had to go to CBR finals in Cheyenne. Western Wishes was great and helped us get there! CBR provided us with amazing passes that got us into the greatest show there was, plus behind the scenes. But first we got to meet Tuff Hedeman. This guy was so nice, and very sweet to our little boy! Carson says " I like the Tuff Cowboy!" :)

Some awesome people from Colorado raised over $19,000 for Western Wishes. Wesley Silcox from Payson, Utah came out to take some pics with Carson and Rigger( a western wishes boy from Wyoming)

Blake was  silly and loved being with his dad! 

Carson wanted to ride the bull... what better way to do it, than with out a 3,000lbs animal chasing him! :) 

Carson had NO FEAR of the bulls! As you can see the bull was ready to show him who is boss! 

Thanks to Sara from the CBR we got to go see the bulls that were coming up to be rode! AWESOME! 

How they went to town one day! PJ's and Cowboy boots for Tuff boy! :) 

The First of July the Carter family invited us to their sons memorial bull ride in Heber, Utah. They gave Carson TJ Carter's glove, this was a custom glove, that Carson loved! Carson wanted to take it with us to the rodeo! He doesn't understand the importance of this glove, but I was happy to take a little piece of a cowboy with us. The Carter family has been so sweet to us, allowing Carson to share such a special night with their boy. One day I hope Carson understands this gloves special meaning. It also is very nice to know there is just one more watching over him as he fights this battle. Carson has a heart of a cowboy and could make it if he wants... my heart as a mom says don't let him, but I also know if there is a passion I can't stop it! 

Behind the scenes at the Cheyenne Frontier days rodeo! Playing with the other kids! 

A trip we will never forget! A trip we will cherish forever! 

This is such a true song! As we have been on this fight for Tuff boy's life for a year and a few months now, we have found out who is there, and who is not! It sure does amaze me who it was! People I never knew before have stepped up, and some I knew for a life time haven't. It shoes you who really means they will be there through thick and thin. with 2 years to still go, I am sure we will loose a few more off the ban wagon, but that is okay, because we only need + people! And some day I hope we can re-pay those who have been there for us. And pay it forward to so many that have done so for us! 

"Cancer changes your life, often for the better. You learn what's important, you learn to prioritize everything in life, and you learn not to waste your time. You tell people you love them, you learn to a deeper meaning of love. If it wasn't for the downside, having cancer would be the best thing and everyone would want it.' That's true. If it wasn't for the downside."

Our "normal" isn't the normal, normal... it is a "rare" normal!

I am convinced this kid is out to have the most rare conditions and stump doctors to no end! I am hoping 3 strikes he is out, Bronchial Malaysia, Leukemia and now muscle mystery!?!?!

Tuesday he had a EMG or...Electromyography (EMG) is a technique for evaluating and recording the electrical activity produced by skeletal muscles.^[1] EMG is performed using an instrument called an electromyograph, to produce a record called an electromyogram. An electromyograph detects the electrical potentialgenerated by muscle cells^[2] when these cells are electrically or neurologically activated. The signals can be analyzed to detect medical abnormalities, activation level, recruitment order or to analyze the biomechanics of human or animal movement.

Just talked with the doctors waiting for Carson to come out... 50% weakness in left leg don't push activity and need to follow up with our doc in a couple weeks repeat test in 6 months... Right leg was 30-40% decrease all lower leg could be a muscle thing all on its own not sure till we do another test! Just another condition to follow and watch to see if chemo has caused this or if it is something he would have had on his own!  this poor kid can't catch a break! Thank goodness he is Tuff about it all and even told me he was excited to get his superman medicine "aka sedation" medication!

So what do we do from here? Well we are not sure. They will run yet another test in 6 months. This is not a pleasant test and they will sedate him for it. We need to have a second test in order to know where he is trending! We will see his neurologist in October. 

This is his medications! This is a typical dose for him on steroids and some times we add 12.5 pills to this!!!!!!!!!!!! It is always a challenge to get these into him but we try our best to bribe him into taking them! What else can we do right/>

Here is what the test is! They had to "ramp" from a 7-8 to a 17! for him the doctor said it wasn't normal to have to test this high for kids his age! 

Being BRAVE!!!

Don't lose hope. When the sun goes down, the stars come out

Yesterday Carson, our Tuff Boy had yet another surgery to explore and figure out what to do with his airway! Of course we still do not have answers. Our Doctor is hesitant on what to do with him. It is rare to first have this condition and second even more rare to not out grow it. As our doctor said "He is his own normal, he is Carson"! I think he hit it on the head! Yes he is his own normal and he will stump the doctors as much as possible! We were really praying and hoping for a miracle and that we would have a good plan of action, it didn't turn out that way. Our Doctor, Dr. Meir wants to take Carson's case to a conference and talk with other doctors about him. Brant and I also would like to talk to other doctors since the surgery that is suggested is a BIG one, and would require us to travel, and be in a hospital for weeks! So we are sending his information to CHOC(Children's hospital of Cincinnati) and CHOP (Children's hospital of Pennsylvania).  

We are not sure if this is something he can live with and just be limited to what he can and can not do, or if it will worsen as time goes on.   This pictures are kind of gross, but give a great idea of what is going on. The first picture is his Bronc tubes and you can see the left bronc tube is much smaller than the right one. almost 1/4 the size. it is collapsing but it is also doing well to open back up on its own. 

On a good note... We got in touch with a foundation called Western Wishes! The organization is amazing! I am so impressed with them! They got our Tuff boy into riding a sheep and made him a little celebrity with the bull riders that night! He told us he is going to ride sheep, make money, enough money to buy a boat! :) Big Dreams for such a small guy! 

Just like the boys' he thought he was just the same as all those bull riders! :)

I love this picture of him! it is such a sweet moment, and such an amazing man that got on the bull with Carson and was so sweet to him! Tyler Farris is his name! 

A vest that all the bull riders signed for him! 

Him tipping his hat to the boys! :) and wearing the riding glove! 

Getting on, who needs their mom, he is Tuff and for sure wasn't needing my help! 

Being a goof ball! :) this is what keeps us going. He can always make us laugh!

We can no loose hope! No matter what I will always have hope, till the day 10 doctors tell me there isn't any! I know in my heart we can beat this, and will! We just will have one bumpy road and journey along the way! The climb song is such a great song, I am finding music to be therapeutic to both Carson and I! Finding songs that mean something and singing them with him, gives him and me hope! :)