Tyler Robinson Foundation

Where do I start about the Tyler Robinson Foundation? AMAZING, is where I start.  They are amazing, they are incredible, they are astounding, they are shocking, they are breathtaking, they are extraordinary! But it all starts with a guy named Tyler, Tyler Robinson. A man that was so Christ like, it is inspiring. Tyler is all of the words mention above, but most of all he was Christ like.

(Millie, holding a picture of her and Tyler)

August of 2013 I got a call from Tyler's mom Shannon, she told me my son's story stuck with her and that since her son had past away, the band Imagine Dragons had started a foundation, and she would love for us to be the first recipients of it. I started to "ugly" cry, no one had ever wanted to help us in such a kind way. I was shocked and so thankful for this amazing gift. Fast forward a few months ago and the The Tyler Robinson Foundation came back in and helped us once again, this time it wasn't just a small deal, they set us up with a financial planner (Jason Knight at Cambridge Financial) who came in and met with me, brought me to tears as I told him Carson's story, and unveiled to him the mountain of bills that we had. (You see when Carson was diagnosed it was near impossible for me to work, I refused to miss an appointment and there were times he was at the hospital 3 days a weeks sometimes more. So I couldn't work, and it wasn't fair to my employer either.)

We discussed the deep down, "bills", our lifestyle, I remember wanting to scream and cry telling him that we had sold our trailer, since we knew we wouldn't be able to use it and could use the money to help pay for bills (FYI I am crying now even thinking of it, that maybe one if the hardest things we did, and that I regret). We went as far as if we had plans for our children, god forbid something happen to both Brant and I, we talked about life insurance, we talked about our home, we talked about it all, including my how I would but all the bills in a basket and do the "BILL LOTO" some got paid some did not, this was the only way I could choose what ones to pay!". By the time Jason left my home, I felt exposed it is not something you share with a stranger. But I also felt relief, as I knew that it what was needed to get us on track.

So a few weeks later Jason called me and said that he needed to meet with both Brant and I, I giggled as, anyone who knows our family knows Brant doesn't handle much, as he is busy providing for our family. I had to kind of twist Brant's arm to take off work, and meet with Jason. (Brant is a work-a-holic) Jason came over with his manila folder, he had papers inside. 

He pulled out a paper that had our financial review on it, pretty much we were in bad shape, we had been put through the ringer, we were put in the blender so to speak, and then maybe a tornado. I am sure Jason shook his head more than a few times when going through our extreme amount of bills, and debts. 

Then Jason did something I never expect, he pulled out a plan for us to take care of this burden, the burden that Childhood Cancer had "given" us. I did the "Ugly" cry once again, I was brought to tears, and disbelief, as I was so thankful, there was a path laid out for us, and there was a plan that someone who knew what in the heavens they were doing had planned out for us. 

There was a plan, we weren't going to loose everything, we were going to be Okay. 

This quote is from a fellow cancer mom, it is so true, and I can't explain how true her words are! 

This has to be my favorite song by Imagine Dragons and I can't wait for the "END OF TREATMENT" to play it non-stop! Because when he is done, he is going to be on top of the world!!! 

 

A little insight into TYLER ROBINSON FOUNDATION! 

Seriously love this video!!! shows how much love this man had, and how amazing the band is!

catching up..

Wow time has been moving. Carson is down to 5 treatments! Next week he will be down to FOUR. What seems like this time would never come and yet here it is! 

At his last treatment he was able to play UNO with JT a fellow ALL fighter. 

For Carson's birthday and show and tell he took the mascots to school with him! :) He was in love with the fact that the mascots came to HIS class! it made his week for sure! 

We celebrated 6 years old~ A day that seems like it would never some but we enjoyed it and he loved his cake! 

We then left to celebrate in DISNEYLAND! :) grandma Georgiana and Gaylene joined us. 

Next week Carson will have his next treatment! WE have talked to his doctor about his end of treatment~~ Crazy that this is even in the talks! 

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.