Finding H.O.P.E.

I have been told countless times how strong I am, how amazingly I have handled Carson's cancer. I have said it many times over, I am not religious never have been, but I do beleive in God. I believe that he is there making a path for us, and that we are given these awful hard times for reasons. Why children get cancer I by no means understand but maybe someday I will see the full picture. Anyway, back to being strong, yes I am strong, damn straight I am strong, I have to be. There isn't a choice, when you see those eyes looking at you, you don't have a choice but to suck it up buttercup. 

There are countless days/moments I loose it. But I some how always find pick myself back up and trust that God has this. 

 The past 4 weeks Carson's airway has not been "right". I struggled for the first two weeks with a lot of emotions, I couldn't pin point it... then it hit me, his airway is what started this whole cancer journey, I rushed him to the ER because he couldn't breath, he sounded horrible as he has for the past 4 weeks. Doctors have been out of town, and answers have not been given. On-call doctors even suggested we wait for our "regular" doctors to come in, because Carson is in their words "a very complicated case". I do not love hearing that, but appreciate the doctors being honest. 

HOPE is hard to keep a hold of. It is so hard at times. But I pray at least daily, if not multiple times. I really pray that God has a better plan than what I have dreamed of!!!!!  

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. 

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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/