The craziness continues

We got an offer from RMR raceway to go out and let Carson be the Pace Car driver! He loved it! He thought it was cool to ride in a fast car! He enjoyed the races and it was great to not worry about him being around germs and such. It was a much needed night out! 

Both the boys were AMAZED by this cup in the infield of the race track, they wanted to know when they could get a drink! :) silly boys! 

We had a family BBQ with the Hancock's. We don't see them as much as we would like, so it was nice to catch up with them. We got to meet their new cousin Tucker. He is cute the boys loved him. 

In their camo ready for Hunting, even though we are not able to go! 

We hope in 2 years we will be able to buy another trailer and go out hunting, but for now we will just pretend. 

We have been doing better. His cough is still here, and we still do breathing treatments some nights. the air is changing and is dry, we now have 2 humidifiers going in our house to help.

  Carson has been going to pre-school, giving me time with just Blake. It is nice to just be with him, since I spend a lot of time with Carson doing medications, doctors visits and such. 

We have been blessed to have a few people donate to our family, many of you came out to eat at Chili's. Every penny helps, as we pay so much out of pocket, plus the travel to and from and the unexpected ER visits that seem to always pop up.  It is a blessing to have so many help us. I can not wait till we are in the position to give back to others. It is a humbling experience to have other help us. 

Fighter!

I have hear a million times to be strong! 

Carson Getting his Port Accessed!

I don't know how many times, a nurse has a jaw dropping look on her face that Carson uses nothing to "numb" his port. To him it is more tramatizing to use something on it, it means another medicine. A sweet Nurse Tiffany who got breast cancer(booo) said it does hurt to get it accessed and it kind of pinches. So I guess he lives up to the name Tuff each and every day. I hope Tuff Hedeman doesn't mind sharing his name! :)  

This video was taken at PCMC to show other kids option and how easy it is to access your port. Most kids are not this okay with it this, and it takes time to learn that it isn't that bad! Carson has been amazing since day one and always been brave about getting it accessed. 

SO I thought I would share with you what they now share with other kids at PCMC

Dr. Carson

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!