Merry Christmas From our family to yours!

God Gave me you....

I wrote this post a few weeks ago; but held off posting it, maybe because it is very emotional for me.

I often have heard "do you ever wonder why"? I hear other families going through the journey ask and plead with God, of why? I do wonder why...(but not the same as many; this may get real spiritual for a minute) I have asked Why, is the sense of what are we supposed to learn from this trial?!? I have said many times over that god gives us what he knows we need to go through. The trials that will make us stronger, make us believe, make us learn lessons, we may not even realize we are learning. Does cancer suck, YES IT DOES. Cancer sucks 100% I have lost 2 grandparents that I was close with to it. My husband lost his dad, a man I never got to meet. When My husband and I married we didn't ever think we would be facing what we do today. The trials are real. They say that America has a divorce  rate of 50%, and you put the stress, and reality of having a Childhood cancer, I can't even imagine what the rate is.  Does that erase the many, many fights, over how to pay for his treatments, how to have him take his medications...(I remember arguing in the kitchen one night as I was fighting with Carson to get his medications down, it was a day he had to take 16+ pills, he was on steroids, and it was a mess. I was so frustrated so angry that I was fighting for him to take a medication that would save his life; and I was angry I was the one in there doing it. Why should I fight this battle? I lost my cool on Brant, who came into help. I took a break and went to our bedroom. Sat on the bed cried as hard as I could for the 2 minutes before Blake came in to find me, he asked "mommy whats wrong" Climbed up on the bed and hugged me. I dried my tears, and said mommy is sad, I gave him a hug and took a deep breath and walked back into the war zone to get this medication down. Brant gave me a hug when I came back in. Between Blake's hug and Brant's I was able to find strength to help Carson again. I took the pills away, let him calm down, and then talked to him about it, after he took his meds, he chewed his medication.) Why Brant couldn't take off work to take him to treatment, and many other fights about who knows what. The stress that Cancer has put on our marriage is insane, unthinkable.

But at the End of the day; I always remember, he is there because we choose to walk through whatever was to come. We are walking through hell and have been for 2+ years now and yet, at the end of the day he is the only one I want to walk through this journey with. He is my rock, He is my complete opposite, but somehow we make it all work.  He is a thinker, I am not, He knows nothing about Carson's cancer, besides the basics... he trusts me to make life changing decisions and supports them with out question. me- I know more than I should and can ramble off medications, and surgeries with dates with out thinking twice, He is quiet, I am loud. He is very shy, I am not. He is reserved, I am an open book.



"On my own I'm only
Half of what I could be
I can't do without you
We are stitched together
And what love has tethered
I pray we never undo"

I know now that walking through the hell of cancer, isn't easy, it isn't for the weak, it isn't fair. But God gave us this journey, and God gave us each other to get through the hell.

 Romans 5:3-4

"And not only this, but we also exult in our tribulations, knowing that tribulation brings about perseverance; and perseverance, proven character; and proven character, hope;"

This past weekend we were able with the help of both of our families pull off an amazing weekend get-a-way. It was very much needed. We have not been away alone since Carson was 9 months old for more than a night. So to have 4 days away was amazing. the Past 2 years we have needed it more than we could have even thought. We enjoyed every moment of it, we didn't get into the "deep" stuff we just kept it easy, simple, and enjoyed the fun, and each other company! :) 

Update... long over due

The past few weeks I have avoided blogging, stress, and the unknown is hard. Yesterday Carson has a scope surgery, along with his routine LP(lumbar puncture for chemo). 

Before going to Surgery Carson had to do his 2 hour appointment at the Oncology clinic, he received his IV chemo (vincristine) we see his Dr. and also seen his social worker; Who had a special present for him, his Chemo duck! :) He was excited at this duck has a port just like him, and he is able to access it as well. 

 He went off to surgery with out a hitch. It breaks my heart that it is so "easy" for him to walk through the doors with out me, and that he is okay with going with perfect strangers dressed in green, and that he never looks back. I always tell him he is going to play hide-n-seek with the guys in green, and he has to find a good spot, and I will find him after! He plays along and goes. 

We seen his ENT doctor before he went in, he said he was hoping that he would not need surgery, but he would have a plan after, and a good idea of what we should do. 

It went quick; super quick, I have a " surgery routine" I run to grab something to eat, run back up to eat it, use the restroom, and then wait, wait, wait,  game. 

The Dr. came out and took me into a private room, (I dislike these rooms they are only used for "serious" news or "bad" news)  He had pictures in had and explained that his airway is not better, it isn't improving, in fact it may be worse than it was before.  He explain there was concerning evidence in his airway that he is aspirating liquids, because he has what they call cobble stoning.  He said we need to do a swallow study. He also said that there is a study(oh how I dislike studies, but I love them as well since they are improving options for our kids) that we could qualify for a study in Michigan that would do a Stent, and it would be WAY less invasive than the surgery they would have to do... the surgery they would have to do CAN be performed here in Utah (great news) and it would require them to bust his chest bone, and require him to be in the hospital for 2-4 weeks and be a rough recovery after that. So the CHANCE that we could do something else would be a big deal in his case. The Dr. also told me Carson is but a couple handful's of patients in the US that are still dealing with his airway condition, because most are corrected by the body or surgery is performed by the age of 3-4 years old.   

Enough about the medical side of things what we have been up to for the past few weeks.... 

 The boys asked Santa for.... Carson; a green ball, a monster truck like daddy's, and go fish. Blake; a Hippopotamus :) the poor Santa about fell off his chair laughing and was very impressed with him.  

Update 10/12/14... and...

We had to squeeze all the fun in before Carson's surgery! So we went to Corn Belly's and did an amazing photo shoot with ANYTHING CAN BE! :) Jonathan Diaz is amazing and it was such a fun day. :) 

 Carson was in the time of his life riding the horse! He loved it. 

Jonathan Diaz and Carson.  

Carson was having surgery on his legs; due to chemo and structure issues, he needed to have surgery to have his Achilles tendon lengthened. They do this by cutting three cuts down each side of his ankle/lower leg and cutting the muscle.  After the surgery they cast both legs to allow the muscles to heal, and help them learn to stay in place. He will be casts for 4 weeks and then in walking boots for 4 weeks, and then some major physical therapy after.   

We got up early on Friday! Carson was the doctors first case of the day. We had to be there by 545 to check in. The night before someone put these cute glow stick monsters in our yard. It was cute and the boys loved it.

Right before we walked out the door.

Carson and I always play with the lights. We turn off the lights in the room and use the optical light as a flash light. Brant wasn't thrilled with being spotlighted at 630 in the morning.

After his Leg surgery and LP for chemo he had a major headache. He had to wear glasses to help with the light.

The minion had to have a port and all the fun sticker that Carson had to have. He even put casts on him. Aunt Becky did a great job with the minion he loves him. 

When we got home he was happy to be home and rest. 

The next day Carson was looking forward to working as a Mascot. He has enjoyed being a mascot and takes this working business really seriously. :) he loves it and that is all that matters. 

\

He also lost another tooth! The way he is going he is going to have the tooth fairy in debt. :) 

While at the Mascot Party Blake was able to ride a horse! he loved it! 

WE HIT SINGLE DIGIT IN OUR COUNT DOWN TO THE END OF TREATMENT. 

The Light is shinning Bright...

We are officially one YEAR and counting! He has 11 more treatments left. This was huge! He is ready to be done! 

This visit was different in that his BROTHER was able to go for the first time in 2+ years he has been able to join us to the CHEMO CLINIC! He was excited to show his brother many of the ins and outs of this place! TO Blake it was a mysterious place that Carson had fun at; he learned it wasn't as fun and wasn't as exciting as he had thought. 

Counts were not good, this is the first time in since he entered maintenance that he has had to decrease and this time we stopped it all together until his counts could come up. and ANC of 410 is not a good thing, and we really need to be careful.  BUT we will still live...

We visited Grandpa Dan, Sent him balloons, and cleaned up his resting place. 

Carson got really backed up and wasn't feeling well. 

He had a CT, the only kid I am sure the nurse has ever had ask for more contrast; she was shocked when he asked for more. I laughed and said he is on steroids. :) 

We see the light we know it is coming soon. I can't wait to throw a party like no one has seen in celebration of him taking NO MORE CHEMO THERAPY!

Here is a insight on Childhood cancer awareness... 

Day 3: The Fault in our Stars coined the term "cancer perks." It's aptly named. I have heard much backlash and many say "they are doing FUN, things I could NEVER do with my kids" Yes, childhood cancer has perks. And from the outside looking in, it may seem like these kids/families are showered with more gifts and recognition than they should be. But the thing to understand is that they have given up playing on playgrounds, swimming in public swimming pools, even trips to the grocery store. They can't go to school, Many can't run, are in pain (Carson for 2+ years now). Carson gave up a "good" Christmas that first year, having treatment on Christmas Eve. He struggles to be just like the rest of the kids. I as his mom know the full reality that cancer, or the treatment we are using could take his life.

As I know with many of my "cancer mom friends" I'd take a cure or prevention over Disney World ANY DAY!

Some organizations that have helped bless our family along the way,Children and the Earth, Inc., Mascot Miracles Foundation, Make-A-Wish Utah, Camp Hobé, Jessie Rees Foundation: Never Ever Give Up,Western Wishes, and Chemo Angel.

Dear New Cancer Mom,

I’m sorry.  I am sorry that you are part of this group.  I am sorry you now have the title of cancer mom.  Your life has changed.  In one split second your world just fell apart.  Allow yourself to cry, it will make you feel better.  Allow yourself to kick and scream and have a tantrum, let it take all your energy, because there are somedays that crying is all you can do for the day.  The fog will lift, I promise.  The feeling you get when you walk into a store or a restaurant, that feeling that everything is surreal, that you want to turn around and walk out because everyone in that place is happy and laughing, it will go away.  In place of that, you will look at people that are constantly unhappy with their lives and remind them of how precious life is.

Stay positive, things do get better, but be a realist too.  Don’t allow people to make you think that your anxiety and worry is not justified.  It is.  Your child was diagnosed with cancer.  It’s a very scary world to be placed in.  Watching your child go through this and watching other children, it’s not something you wish upon anyone….but when you witness your own child and all the other children continually fighting, well….it will change your life.

Document your journey.  Whether it be a journal, a blog, pictures, videos.  Document it.  People may ask “why would you want to document this part of your life.”  It’s a reminder my friends, a reminder of the battle.  Write your child a letter at different times of their treatment so they see the battle in your eyes, as a mom.

There are people that will support you the entire time, and others that just can’t keep up, that are tired of altering their life to accomodate you.  Those are the ones who don’t understantd.  There is no need for you to explain, so don’t.  You have a sick child, there is no explanation needed.  Move forward and don’t hate them for it.  It’s just a reminder of how difficult this life is and that some people chose to step back when things get to rough.

If you have a spouse, spend time with them alone as much as possible, go out on dates when you are able to and take a nap when the opportunity is there.  Don’t complain to much about the little things, it’s not worth it.  Pay it forward,  there are many, many people that will help you.  Some people that you don’t even know.

Swallow your pride and ask for help when needed.  Surround yourself with people that understand and know what you are going through.  No matter how much others claim to know what you are going through, they don’t.  Perhaps they sympathize with us, but they can never empathize.

If the opportunity arises, take sometime for yourself.  Even if it’s a ride in the car by yourself, do it.  Don’t feel guilty.  You are giving 110% of yourself to help save your child.  The worrying, anxiety and lack of sleep is overwhelmingly exhausting.  If there is anything that has caught me off guard this entire 3 years is the exhaustion that comes with the sleepless nights, the hospitalizations, the worrying, the crying and just the fight.

Regardless of the type of cancer, the battle is long and difficult.  Regardless of what others say, this will be a part of your life forever.  Once a Cancer Mom, always a Cancer Mom.  Hang in there.  Keep moving forward.  Head up, chin up.  #onward

Sincerely,

A Cancer Mom

http://www.chicagonow.com/mary-tyler-mom/2014/09/sams-moms-story-once-a-cancer-mom-always-a-cancer-mom/

The River...

Carson update! He got Mitts. I have no clue what they are really but we used some medication to clear them up. He doesn't have IV Treatment Till the End of July we have some great family plans that we are planning and wanted him to feel his best, so he could enjoy the time, and enjoy time with the whole family!

He got Chemo and did pretty well with this round. Steroids SUCKED for him, but he did amazing! 13 more months! I can not wait to have a BIG NO MORE CHEMO party for him Next July! Seriously A BIG ONE! 

Strawberry days! Our home town Rodeo, Carnival, and celebration!  I got a video of him riding, but can't figure out how to load it to the computer! when I do I will post it. 

Ms. Rodeo Utah let him sign his chaps, and gave him a pair of his own. He loved them! :) This is The Rodeo Royalty of Utah. 

He rode in our rodeo again... He did great, but I think he was too big for the sheep because the sheep dropped right out of the chute, pissing him off! He no longer would like to ride sheep, only calves. REALLY? I am not sure about that but we will follow whatever dream he has. 

Him and Daddy! 

There is an amazing story that goes along with this, each year Tough Enough To Wear Pink honors those who are fighting cancer, they ride with the saddle empty, this year they filled it with a fighter, my fighter, my son, my hero! There wasn't a dry eye in the house, we were beyond thrilled with how well Strawberry Days Rodeo committee HONORED our little one! 

After he got off the horse, the Announcer was saying a prayer we stopped to pray, and I looked down and seen him holding his hat, and closing his eyes, while the announcer prayed for the cowboys.

I have posted before of how music helps me get through this journey. Since I was little Garth Brooks has been an favorite of mine, I kind of have a obsession with his music and him. 

The song the River has been for me a life Anthem. No matter the issue, I am now more than ever a believer that we are given trials, victories and everything in between for reasons beyond our understanding. I refuse to stand on the shorelines and let the water slip away, "never knowing what's in store 

Makes each day a constant battle"  "there's bound to be rough waters  And I know I'll take some falls with the good Lord as my captain I can make it through them all"   These lines are my favorites. With the good lord as the captain we will make it through all of it; but we choose how we make it through, and we choose happiness. We choose to fight with a positive attitude, does cancer such HELL yes it does, but that doesn't mean we have to be down and out about it. We need to stay positive and make sure that we are helping others along the way. 

    Carson doesn't understand what cancer is, we as his parents choose to not let him understand it, one day he will one day we will explain to him why he is our hero, we will explain to Blake his brother why he is also our Hero, but until they are older, much older I hope they won't ask what cancer is, I won't have to tell them the reality of it all. 

I choose to help other families, I love helping them. It for one keeps me busy, and lets me give back a small part of what has been given to us. Yesterday was the 6th annual Ride the Brainwave event. I helped in a small way put this amazing event on. I love it. 55 families helped, 55 kids/parents suffering from some kind of serious illness, or are angels in heaven. 

These were released for our Angels. Carson loves to send balloons to heaven, (he sends any and all balloons to his Grandpa Dan(who passed away 13 years ago due to cancer) He remembers what colors he has sent him.) We released these to all the Angels we have gone too soon. We remember them, and carry them in our hearts. 

This boy also got to ride in ONE FAST TRUCK! He was over the moon I was a good 5 feet away from the truck carrying him and he was jumping out of my arms to jump into the truck. He couldn't get in fast enough. They said the guy burned the tires all the way down the street, Rev'd the engine, this was music to this little boys heart, anything boy, he is all over. 

This is an awful picture but I am in the back, standing with one great friend Lara, who lost her child to cancer, who I love dearly. Plus Carson has a smile of his on... he was on a mission. 

These sweet girls came out and supported my son, even though their own mom just had surgery the day before, to get her port and begin her battle against cancer. These are Brant's cousins, we love them! 

He did a Tea Party, it was fun for him, hey it was food and wonderful people in costume! :) 

Blake wasn't able to go with us to this awesome event due to an eye injury his brother hit him with a stick and got him in the eye, causing bleeding in it. So he stayed with his Aunt and Uncle and enjoyed his day to play with them! His eye is healing well, and is looking better each day. 

While I love Children and The Earth who put on The Brain wave, and Will always have them at heart, and will always help and give back.... I am also starting to help another charity that is dear to us here in Utah Mascot Miracle Foundation. I will continue to carry on my Anthem WE REFUSE TO STAND ON THE SHORELINES, we WILL do GREAT things, WE will NOT stand BY while the WATERS slip away. :)