Touching Story... Plus Cowboy Pictures

As many of you know, CBR has taken Carson, our Tuff boy under their wing. They have been such an amazing part of his journey this past year. He loves when I show him pictures of him being on their page; He will say " I am on the cowboy page"  I have became friends with Sara Rempelos one of the CBR family members. When we went to Cheyenne is July last year; I forgot to grab something to say thank you. The only thing we had was a bracelet that my mom was wearing; she gave it to Sara with tears in her eyes to tell her thank you. The Cheyenne Trip was more than just a wish come true for Carson; the smile, and the heart felt love we felt that few days changed our journey forever! 

Tonight Sara shared this with me "i want to tell you another glorious bracelet story. i gave one of the ride rank ones to a gal who is fighting leukemia too. she's an adult, and she's really having a hard time with chemo. her fiance is former pbr rider JT garcia, who also works with cowboys for cancer and endorses 'sayiwont'. he is a survivor. he saw the bracelet your mom gave to me and asked me where i got it and i told him the story. all of our eyes were wet by the time i finished telling that story and i took the bracelet off and pressed it into his hand. he's hoping to come back and ride with cbr and i think if he succeeds, he'll be a mouthpiece for carson. he said he'll wear it with pride every time he rides. i miss that bracelet, but it needed to go with him, you know?"

I was in tears reading this; and again I am crying re-reading this. Nicol Torres is the gal's name. JT Garcia is her partners name. Being angry with cancer is so easy. The pain it causes Carson is awful. But then to stand back and think of all of the things we have done, the people we have crossed paths with; the blessings that have came from the journey (did I say that Blessings? yes there have been blessings).  Sara is out there spreading my child's story. She is out there working hard to make sure people know who Tuff Boy is. Each person she tells, gives us another up on cancer.  Those she is telling are always sending encouraging words, and prayer. Believe me when I say we feel the love.
Thank you Sara! 

This is the photo of the bracelet; that she has passed on to someone else! 

We were able to get some amazing photos done of the boys today! I was super happy and over joyed at the turn out of these pictures. I had to bribe the kids for smiles and to be good; but hey it worked! They love the Chaps Jag Saddlery made for them! 

This shows the brother love! They are best friends! 

February update

Not sure where to start. Since Thursday it has been a VERY long weekend. I try my best to prepare for vinc (chemo) and steroid pulses. This is the worse part of treatment. I have said it a hundred times. 7 days out of the month I have a confused, crying, angry, upset, sad, happy, giggling, back to mad, and upset child; along with a sibling who isn't sure what has changed but knows to run for his life as fast as he can when he needs to.  If you didn't live it with us each moment of the day you wouldn't believe what we endure during this week. He is always afraid there isn't enough food, he is always hungry, he is sometimes just so overwhelmed he doesn't know what he wants or even what he needs.  It takes a lot of deep breaths, lots of Pepsi, and lots of showers so I can cry with out them seeing.  

On the upside his Birthday is in 4 days. He will be 5, and in treatment for 20 months. He is looking forward to his birthday. I am looking forward to it. Each day we have is a blessing, each smile we get is something I cherish. 

We are taking taking him to the monster truck rally here in Salt Lake City. I am not too thrilled but the boys are and that is what counts. 

Both Carson and Blake got a gift in the mail on Wednesday when we came home from Carson getting treatment. CHAPS! They were over the moon. Blake's face was one I wish I would have had the camera out for.  They were given to the boys from a sweet family, The Garcia family! I can not express how thankful I am for their amazing gifts. These will be the best two looking cowboys in town for some time to come! Carson can't wait to ride sheep, Blake isn't sure he wants to try, but he loves the Chaps! :) 

I wanted some cute pictures... but it was way too cold, muddy to do so. This was about all that I got. :) 

Carson had his second sleep study. This one seemed to be more intense than the last one. There were more wires, and more things attached to him than I thought possible. We have to wait a good two weeks to get the results, but I am hoping it is showing improvement with his airway.  

Dear Parent of a Sick Child,

Dear Parent of a Sick Child,

You are still there, aren’t you?  You are still at the hospital awaiting for results, for your child to wake up, and for any glimpse of good news…anything that will settle your heart to the hope of a new day without sickness.  You are tired, but you do not want to show it.  You put on a strong face, but you wonder sometimes if you can keep this costume of strength on.

You have found yourself to be a superhero of sorts,  During those quiet moments, you feel like Clark Kent.  You feel vulnerable, weak, and absolutely human.  Yet, during those strong moments where your sick child is watching, you adorn yourself with that cape of strength that you have uncomfortably worn for a while now.  You become Superman or Superwoman.  You stay up all night watching the monitors next to your child.  You make a list of questions for treatment options, expectations, and possibilities.  That brave mask you wear that shows no sign of weakness or vulnerability is rarely taken off, especially around your sick child.

Yet, you sneak off to the isolated corners of the hospital where no one can see you.  You weep with the agony of a desperate heart.  You cry out, “Please, please. Heal my child.” You bargain with God.  You tell Him that you would gladly trade positions with your child.  You would shorten your life in order to lengthen the life of your baby.  You, dear parent of a sick child, are a weary soldier.

Dear Parent of a Sick Child, be still now.  It is okay for you to weep in the quiet corners of the hospital, and to bargain about extending your child’s life.  It is okay for you to yearn to swap places with your sick child.  You are only human, you know.  But….

You are a warrior.  You hold your child with an incomparable measure of strength as he or she gets one more treatment, one more I.V. that cannot seem to find a vein, and one more painful test. You stay up all night in order to catch your child opening his or her eyes for the first time in several weeks.

Your shield has become one of hope.  It may get dings in it, but you never stop carrying it.  It has become your defensive weapon against those who bring you bad news.  Although dampened at times, it still reflects a light that others catch when around you.

You, parent of a sick child, are one of the toughest kind of parents.  You are a survivor of a war waged on the one person you would give your life for.  You did not ask for this.  You did not expect this.  You were barely able to stand when you received the news that broke your heart, but, you stood for your child.

Yes, you are a Superhero of sorts.  You are a warrior.  You wear the mask of bravery, the cape of strength, and the shield of hope.  

Dear Parent of a Sick Child, do you want to know something?

Your child knows you are there.  Your child sees your brave face.  Your child does not know that you disappear to the isolated corners of the hospital.  Your child does not realize that your knees buckled at the devastating news.  Your child also does not know that you bargain with God on his or her behalf.

Do you want to know why?

Because while you are busy being a non-glorified superhero, you step aside so that your child becomes the warrior, the fighter, and the one who receives the praise for being strong.  

Dear Parent of a Sick Child, your kind of strength only comes around every so often.  Most parents will (thankfully) never know the depths of exhaustion mixed with a sliver of hope that you have gone through.

Sneak off to the quiet corners of the hospital if you need to.  Pray, and plead with God about the life of your child.  Advocate for treatment options, keep your mask of bravery, cape of strength, and shield of hope on.  

For your child…

the one you pray over,

the one you bargain for,

the one your knees buckled in despair over,

the one you put on a mask of bravery for,

the one you wear your cape of strength around,

and the one you carry your shield of hope for,

will also wear a mask of bravery, a cape of strength, and a shield of hope.

Dear Parent of a Sick Child, you are a warrior.

Got this from the link below. I wanted to share it, and also post it so I can remember it, so I am reminded of what goes into having a child with cancer

http://barrentoblessed.wordpress.com/2014/01/29/dear-parent-of-a-sick-child-letter-2/

Chemo 1/6/14

Carson had chemo today, he had IV chemo in his port and then also in his spinal fluid(LP)! While he was sedated they performed a EMG, the results show no improvement. We were hoping for improvement. There are 2 possibilities of why his legs hurt, and while we were hoping to get answers today, we will have to wait till June when they perform the test once again. Either way the doctor said a normal child on the scale is at a 17 Carson is barley at a 5; she feels this will most likely be permanent and will possibly effect his walking as time goes on. There is some genetics testing they would like to do, but it will take time and lots of red tape with our insurance to get this approved. So for now he will continue to deal with the leg pain and we will manage it like we have for the past year. Carson is such a non-text book child it is hard to navigate through what is happening.

I am of course heart broken. How much more is a child/mom/family supposed to take? How many different things can be going on with one child? I know I shouldn't be complaining, there are worse things that can happen. but I am; I just want to not deal with cancer, or medical issues. I just want to be normal, I just want to be able to go swimming and not worry, about germs. I want to take my kids to Jump on it places, with out having to worry how many kids are there, and be on the watch for the kid wiping his nose and avoiding that child. I want to be able to take my family up in the mountains 4-wheeling/camping for a weekend, with out the worry, or fear of fever. I want to travel. I wish we could just do the normal everyday things that most families do, with out the FEAR of what cancer has brought to us. I wish we didn't have to choose what bills we pay each month, it is like playing the lotto, put them all in a basket and pull out the lucky ones that get money each month. It is just stupid, and annoying, and just plain pisses me off!

"Childhood cancer is NOT happy kids with sweet shiny bald heads and brave smiles. Childhood cancer is NOT something that is given to kids because they are strong enough to handle it. Childhood cancer is NOT sunshine and love. Childhood cancer is scary. Childhood cancer is dark. Childhood cancers ruins families and lives. It is probably one of the most stressful, heart wrenching things in the world. The way childhood cancer is portrayed, is not accurate." ~ Maya Thompson

I am guilty of this, I am guilty of hiding the harsh reality of what it really is. This weekend while I was talking to my husband, he didn't understand why I was so worried, and upset about today. I finally turned to him and said " you didn't have to stand outside the door and listen to your child scream, and know that you can not go in there, and just hope that it is over soon" Because he is hard at work supporting our family, and making sure we can have a home, and things we need, he doesn't experience many of the emotional scares that I do, because I am the one holding him down when he refuses to get his port accessed, I am the one holding the throw up bucket at 3AM, or rubbing his legs till he falls asleep. I am the one that is talking to the doctors and answering all the hard questions, and listening to all the details of the plans of action.  I tend to hold all the "bad" in, Why? Maybe because it hurts too much to speak it out loud again. Maybe because if no one knows, they won't ask questions, and I don't have to re-visit it again? Maybe because I feel like I am protecting everyone else by not sharing all the heart wrenching, dark, scary, awful things that happen. Why? I don't  really know.  

I do know Childhood cancer has changed our lives, it has changed Carson, he thinks taking 14 pills at one time is normal. Blake thinks taking medicine is normal and wants to take it as well. I worry about everything. I have to clean like a mad woman(even though my house always seems to be messy), Brant has to work many hours just so we can keep our head above water. While I know Brant and I have made the changes, because no matter what it was we would give it up to see our child come out on the other side, it still sucks. We have the right to be angry, mad, upset, and say that cancer SUCKS. While I know many don't understand the reasons why we do what we do, why we make the choices we do, they are our choices, and to tell the truth I don't think half the time we really know. We do know that we are going to fight, fight like hell, give it hell, give it all we have. We will not back down to cancer, or the side effects it is causing. We are going to try to be as normal as possible; as hard and as challenging as it is we are going to do it; what other choice do we have?  

Christmas and I wish you enough!

Christmas this year, was something I was looking forward to. Last year, Carson had chemo on Christmas eve, and that night I went to the ER because I had a rib out of place. It was not a fun Christmas. So this year I was excited, till we got the news we were headed to PA right before. I put the stops on everything. I didn't buy but a few things, because I wasn't sure inside if we would be home for Christmas, or if we would be stuck in PA. Once we got home, I was able to get into the Christmas holiday again, and begin to enjoy it. We had a count down with the boys. They looked forward to it. They told each other for a couple weeks Santa was watching and they needed to be nice, or they would get rocks. We had a small Christmas, and enjoyed it a lot more than I expect. 

"I wish you enough sun to keep your attitude bright.I wish you enough rain to appreciate the sun more.I wish you enough happiness to keep your spirit alive.I wish you enough pain so that the smallest joys in life appear much bigger.I wish you enough gain to satisfy your wanting.I wish you enough loss to appreciate all that you possess.I wish you enough hellos to get you through the final goodbye."









Here is a video I made of Carson, aka Tuff Boy, wanting to become a cowboy, and some of his journey.

Philly...CHOP....

We embakred on a journey Dec. 9 to Philly to Children's hospital of Philadelphia. I was a ball of nerves waiting for the trip and waiting to see doctors. Brant has a cousin who is out there for school, so we were able to visit with him and he took us to see the Liberty bell, and around the history of Philly. We even got to eat an AMAZING philly cheese steak(YUMMMM). It was great to have family near if we needed them; and it was great to see them, it has been a long time since we were able to see them.  

We spent the next day at the hosptial ALLLLLLL day long. It was filled with many doctors and tests and many questions. I answered the same question about 20 times. I was done, Carson was done, and Blake was just plain confused why we would spend all day in a hospital. 

That night after we got back, we had some awesome cowboys come out and see Carson. He was excited; but didn't show it well. It was a long day and then to have to sit for a moment to talk wasn't what he had in mind. So we got a few pictures, they brought the boys some sweet gifts and we are able to talk to them for a little bit. 

The next morning we left for CHOP to have a scope surgery done. Though I knew we were going to be okay; it was odd being in a different hospital where things are so much different, and they are more fast pace. 

He went in; and with in 30 minutes he was out. 

This is his airway; it is so odd for him to have such a small airway, and he should have grown out of it. On Thursday one of the doctors mentioned it seemed like he had asthma, I was kind of shocked, we flew clear across the country for asthma? The next day he confirmed he does not have asthma; he has a severe case of Bronchial Malisia. this pic above shows how small it really is. For now we are not going to do surgery, we are going to start a medication called Behanechol; it is a study to use it on Peds but we are hopeful this will make it so his airway does not collapse. The doctor was surprised of how well his body was able to make up for the small airway. 

We were grounded for 3 days due to blood clots; they did not want us to fly him home just in case! So we went up to NYC! It was fun the boys loved it.

We were so blessed to have angels help us along the journey. We met some amazing people; we were able to learn so much; and able to be blessed. There are angels among us... you just have to accept them. They show us how to live, teach us how to give, and accept gift.  The ray of hope is the most important. Hope, and faith get us so far in life; we have to have hope, we have to have faith that our journey is marked out for us, and that we will have have faith that it is what is right.

The climb

I find much comfort in music as do my boys. We sing and dance all silly, Carson even has his favorite songs, and also tells us what songs are ours, based on album art. 

So as the past few days have came and gone, I have been more than over whelmed with emotions. Anxiety being off the charts, fear, questioning do I really want the answers that we will get? What if they change our whole world again? Can we handle it? As I was driving home alone this song came on. I had  a second where I thought, the journey of life; I am always worried about a what will happen when we get over this trial? What will we do? 

I had to take a step back. It isn't about what is waiting for us on the other side, it is the journey, the long hard never ending road it seems; but it is the journey that makes us.

Carson will be who he is because of cancer, because of his air way, because of the way we have raised him and because of things around him.

Of course this doesn't make the fear, the anxiety, the worry go away. If anything as the days go by the more intense the emotions get. Of course I put on the brave face. I try to not let it show, I hold it all in. Because If I let him see I am worried, he is worried, and if he is worried it is worse. So we are on the "Climb" of our life. We are on our journey to where ever it is we are heading. I believe there is a bigger picture, a plan for each of us. A plan that is much bigger than we may ever know in this world.