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."
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!
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! :)
Neurology called today. Carson had some blood tests done, and they were on the "normal" range but on the higher end. Doctors will use an electromyogram test to look for muscle abnormalities and to evaluate the way his muscles receive signals from his nerves. They will inserts an electrode into his muscle with a needles. We are not sure when this test will happen, the doctor would like it sooner rather than later so we were put on a cancelation list, and will get a call if someone cancels. We were hoping to combine this with him being sedated on July 9 but were unable to keep him under sedation that long.
Carson was able to Mutton Bust at the Straw Berry Days rodeo! I wasn't sure if he would, but he did it! and Loved it! and wanted to go again! He scored an 80! For those of you who don't know we wanted to name Carson "Tuff" after Tuff Headman but thought for sure he would be made fun of in school. Well that is one regret I now have! He lives up to the name 100%
Remember you're not dying from cancer, you're living with it.
Another lesson learned... The doctors told me when Carson got diagnosed, that people would look at our child and say "he doesn't look sick" just because he doesn't looks sick and you don't see him throwing up and crying in pain, doesn't mean he isn't. I try so hard to stay positive, and not show my family and friends the evil dark side of cancer! CANCER sucks, it doesn't mean our lives have to!
Just because he doesn't look sick doesn't mean he isn't, and doesn't mean it isn't hard for him and our family to live through this evil thing we call cancer each day. We will not let cancer, win! We will not let it Carson LIVE! He refuses, and so do we!
Cancer is our families life now. We didn't not choose this, nor would we wish it upon anyone, but it is our life, the bad, ugly, tears, crying, anger, not so fun, the good, the fun, laughs, hugs, love and all! IT IS ALL our life now! I love the quote above. Carson is not dying from cancer, and has WONDERFUL odds to be cured, but he is living with it each day, and so are the rest of his family. There isn't a second that goes by that cancer does not influence our choices, decisions, and actions. There are things we would love to do, but because of cancer we are not able to, like swim in a river, or go to the lake. Those are things "normal" kids can do, but not Carson. And yes We do break the rules, we do so more often than the doctors would like. As a his mom, I have great friends who's kids are fighting cancer some for the second, third, and even more times. IF that should happen I know that would mean weeks in the hospital for years. So while he is healthy and feeling up to, of course I am going to take him and Blake to do as much as possible and LIVE life the fullest.
Cancer is such an evil thing. This isn't the first time Brant or I have faced cancer. Brant lost his dad to cancer almost 13 years ago. I see the pain in his eyes when he misses his dad. I see how it effects him not to have his dad here, to learn from, to ask questions or shoot the BS. I hate that! I lost my grandpa to cancer just over 8 years ago. I still remember those days like they were yesterday. I became closer to my grandpa in 6 months than ever. I think if Dan(Brant's dad) or my Grandpa (Sherril) had to tell us one thing, it would be to "live like we were dying" to soak it all up! thank goodness my grandpa let me be his test dummy so Carson didn't have to be. :)
Earlier today we seen Carson's ENT doctor. I cried on the way to the appointment, for some reason I knew it wasn't going to be what I wanted to hear. We went to the U of U hospital to see Dr. Meir. I have to say I like Dr. Meir, he is the most friendly doctor, and always remembers us! He is amazing. Carson was making "the noise" that he never seems to make while we are at the doctor, so Dr. Meir was able to hear it. Of course he didn't like the sound of it. There was also a fellow doctor there that was able to hear it as well. We are going to try an inhaler for a few days, if there is no improvement we are to call the doctor. He would also like to do another scope on Carson in July, when he will be getting chemo in his spine. At that time we are praying, hoping, wishing, even doing rain dances that his airway is improving. Otherwise we will be looking at doing surgery much sooner than we had hoped, like this summer!!! This would mean we would have to stop chemo, I fear stopping chemo it could let cancer come back! I fear not fixing his airway and him not being able to breath. It is like choosing what evil is worse. The surgery isn't something that they do here in Utah, it is something we would have back east for, like to Ohio, or Pennsylvania. I hope we can wait on his air way to be fixed to make sure cancer is gone once and for all. But I have to trust the doctors.
We started the summer with a bang... a VEGAS BABY bang.
We went to Circus Circus to ride rides. Carson loved it and was very excited he could ride as many time as he wanted.
He got a fake tattoo, that my mom paid $70 for the guy told her $40 and charged her more! He loved the thing!
Since Grandpa is working in St. George for the summer, it means we have a free vacation house! :) BIG bonus for us. Beaver is a perfect stop, they have a way cool rocking chair, plus Dairy Queen.
We had to have a blood draw, because something was off with Carson. We were not sure what. His blood showed he was fighting a virus, rhino virus or aka a cold.
Carson has been is a lot of pain. Pain that is hard to watch. It breaks my heart. I could not wish cancer upon anyone. It is so hard on the body. We talked with doctors and decided that a hot tub would be a good purchase, the heat and jets may help. With much debate and much shopping around, we found an amazing place Take A Break Billiard and Spa in Springville who worked with us to find the right spa at the right price, for our family. They wanted to make sure it was big enough for our whole family, because the gentleman said we would build memories in there. He was right! We love the hot tub. And so far is seems to be helping, at least a little bit.
Fun from his chemo angel! :)
I got a tattoo! I love it! LOVE IT! I never thought I would get one, but have wanted one for a year, the girl did an amazing job and I am in love with it.
Carson has had a nasty cough for over a month. We went to our primary care doctor to see what was up. He did a chest X-ray, I thought this was a cool pic of his port.
Carson will be muttin bustin in the Strawberry Day's Rodeo. We went shopping for an outfit! :) too bad this one was well over $100!
"You will learn to be a fighter. You will find strength you never realized you had and overcome your fear of confrontation. You do this because not doing this is not an option. That baby girl needs you to be this way. And you’re not about to let that girl down... Speaking of medical things, your days of never seeing the pediatrician because your kids are so dang healthy? Those are over. You will get frequent flyer miles at the doctor’s office. You will collect cards of all sorts of medical professionals. You will learn which blood lab does the best blood draws on children. You will be able to write things like “epicanthal folds” and “oxcarbazepine” without thinking. You will also know that as much as you’re dealing with, you’re grateful that is all you are dealing with. Because there could be more, it could be worse" http://phoebeholmes.com/2013/05/22/to-the-me-of-ten-years-ago/
I stole this from another mom's blog... I hope I can look back and have this much faith in myself. I know that I have to fight, because if I do not, who will. I am his mom and I do not have a choice but to fight. I know more medical terms and how the body works than I ever thought I would. I always wanted to be a nurse, just didn't want to learn this way. I know I am grateful each day that "leukemia", and "bronchial maylsia" is all we are dealing with. IT COULD BE WORSE! I see it each day we enter the hospital, or I learn of a cancer cuttie getting their wings, it happens more often than I would like to say. I vowed last year that we would make it through this, and that we would do so by making the best of it. Life is way too short to live for tomorrow, this is the one thing I have learned.
Today Carson got braces on his legs, I felt so angry knowing this could effect him long term, I have always told myself that it will only be 3.5 years and it will all be done. I was slapped in the face with the fact that some of the effects could last a life time for him. I hope his legs are able to be "healed" or fixed by the braces, but only time can tell.
One time per month he takes 19 pills, it is always on a Thursday. The yellow pills are Methotrexate, and the big white round one is 6MP and the little white ones are steroids. Plus the vitamin. :)
They said for him to wear knee high socks so the braces didn't bother his legs. He LOVES silly socks as we call them, so this was not a hard thing for us to do. He was more than willing to wear the socks and put the braces on. I had someone say they are inspired that I make things fun, I have to, he is 4 he doesn't see the whole picture, it if was all torture for him his life wouldn't be what I would want for him. So we make hard things fun, because it makes it easier for both of us. We include Blake when we can, like Blake taking his nightly Jell-O water shot or as he knows them "his medicine". Both Carson and Blake like to do things together, so when we can, I always try to include Blake or find someway we can. I was happy he was excited to wear silly socks with us tonight.
Currently, one in every 330 children in the United States develops cancer before the age of nineteen. The incidence of cancer among children is increasing. Each school day, enough children are diagnosed with childhood cancer to empty two classrooms
Largely unknown. Currently, there are no established guidelines for childhood cancer prevention!
Late effects of childhood cancer treatment are common in survivors, and approximately one-third are moderate to severe
Two thirds of parents of children with cancer are being forced to borrow money to cover costs while their youngster has treatment, according to research. A survey for the charity CLIC Sargent found families struggle to meet the extra expense of accommodation, childcare, food and travel. Some 66 % of parents surveyed said they were borrowing money to make ends meet and 76 per cent said extra costs were having a major impact on family finances.
The world keeps moving forward as time stands still for me, I am the kid with Cancer, locked in battle to be free. For all us kids on chemo our lives are put on hold, As we fight to stay alive, our chances good were told. Our attitude is courage we live this life each day, Just waiting for tomorrow, praying cancer goes away. Walking on the edge of life We’re never looking down, United here in front of you, until a cure is found.
Carson got to go on a trip with Grandma and Grandpa to Grandpa's new work in St. George! He loved it. Grandpa's truck was very cool.
We spent time with their Cousin Brec and made silly pictures.
We even slept over to make sure we got extra time with Brec.
For Mother's day we spent it 4-wheeling. Could not have been better! We enjoyed it to the fullest.
Carson discovered Pringles are GOOD! and so is dressing up like a super hero.
We had a trip to the doctors for sinus infection. We love when we can catch a sickness before it turns into a fever!
Carson is doing good. Other than leg pain. This is caused from the chemo Vincristine. Tomorrow( May 22) he gets braces to wear on his legs at night. This breaks my heart. The effects of saving his life are taking a toll on him. His leg pain is caused from the muscle in his lower leg not stretching and causing him to walk on his toes in order to stay out of pain. They call this drop foot. WE are HOPEFUL the braces will help, if not we may have to stop chemo, and that may give the chance for cancer to rare its ugly face. The braces will be painful for him, but we hope in the long run will help him!
