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. :) 

Update June

Where to begin....


We have been busy. We have had some major blessings! Lighthouse Invited us to join them on a Cancer Family Retreat, just for families with children fighting cancer, on a beach in FLORIDA! I have to say that it was beyond what I expected, it was more than I could have asked for it was peaceful, and I learned so much. Blake enjoyed it, Carson enjoyed it, we all loved it. Brant didn't go with us, instead my mom went.

From day one I have said that this journey was given to Carson and our family for a reason, reasons we don't understand, but that God has put this path before us and that we are to learn, grow, and become at peace with the journey, not today, tomorrow, or maybe even this life time, but at some point we will. "Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus."  Philippians 4:6-7
"But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”  Matthew 19:26

These were two scriptures that were reminded to me while we were on the beach, and did so much healing while we were there. I have said before that I have prayed more in 2 years that I ever did in my life, I find myself praying in the car, praying while sitting there, and just asking for the strength and courage for not just myself but for Carson and our family.

We drove from Atlanta Georgia to Panama City Beach, Fl. On the way down we stopped at a gas station and they had a simple chain link fence with a sign saying "WILD GATORS" and YES they were behind the old, fence, in  a pond.

Our Condo over looked the Beach.... It was so peaceful.  

This is Hannah she was so sweet and was very good with the boys. :)

All the moms went to get our toes done! :) it was fun and exciting to talk to them. 

The Breathing update....

After a long drawn out mess; the verdict is; that in order to do surgery Carson would need to not have Chemo for 6+ months the risk of infection is WAY too high; they would want a normal child to have a very high immune system to do a surgery like this; it is one that requires them to break the chest bone; and be-build the airway that is weak and narrow. So the risk is too much for him at this time; but we are going to be doing some more testing to find better ways to help him breath, and not get sick so often. The doctors have really never faced a child who has cancer plus Bronchial Malisia. So he is a “odd” case, and I hate, despise, and want to strangle doctors when they say he is “odd” I want normal I want my child to be NORMAL not to be the “odd” case that they don’t know what to do.
We had a very long week. We started with a PFN (Pulmonary Function Test), Then Pre-school graduation, The next day we had an MRI to find out about leg pain; there is some blood flow restriction in his lower calves; so we will be working with doctors to make sure we are being proactive. He then had Chemo. Yesterday we met with the Pulmonary Doctor to get the results of his PFN; he takes twice as long to empty his lungs as a kids his age would, we are going to work with the Pulm doctor to try to avoid surgery and try all options even out of the box ones. We were really hoping the medication he was given at CHOP would have helped much more than it did, so now we in un-charted water .He is very excited about our upcoming trip to Light House Retreat. It sounds amazing, and I hope it is all we are expecting as we embark on this journey, a nice vacation and relaxation will do us great. 

Pulm test He did great even though it required him to breath 20+ TIMES  into a machine. The results told us that a normal child his age would empty their lungs in 6 seconds and it takes carson 12-14 to do so. :( not the best but we already knew this. 

GRADUATION 

As a mom with a child with cancer; we celebrate everything! I have too often been hit square in the face with when I attend services for my friends children that it could be me in those shoes; so again it reminds me that we have to LIVE we have to make the most of everything; because it could be taken, I pray it won't but it could be. 

MRI- He sat still for just over an hour for this test! He did amazing! The doctors and nurses were worried he would have trouble sitting still for as long as he did but to our surprise he did awesome and did it with out problem.. 

waiting for chemo

Chemo

I love his selfies!!!

T-bone part of the Mascot Miracles Foundation is the boys fav. 

A Prayer for My Son

Dear Lord,

You know my son so much better than I do. You know his sickness and the burden he carries. You also know his heart. Lord, I ask you to be with my son now. 

Lord, let your will be done in my son’s life. Lord, I pray for my son just as your Word tells me to pray, for healing. I believe you hear this earnest prayer from my heart and that it is powerful because of your promise. 

I have faith in you, Lord, to heal my son, but I also trust in the plan you have for his life. Lord, I don't always understand your ways. I don't know why my son has and had to suffer, but I trust you. I ask that you look with mercy and grace toward my son. Nourish his spirit and soul in this time of suffering and comfort him with your presence; and let the angels sing to him softly. Let my son know you are there with him through this difficulty. Give him strength. As may you, through this difficulty. I say these things in the name of Jesus Christ Amen

The Mother of a sick child...

“Motherhood is the hardest job you’ll ever love.”

I’m not sure who first coined that phrase, but its truth becomes clearer to me everyday. And nowhere is that truth more evident than in mothers of children with a serious illness.

Throughout my years of working at this hospital, I’ve had the privilege of knowing dozens of moms who find themselves within these walls fighting for the lives and wellbeing of their beloved children. We look at them and say things like, “I could never do what you do,” and “I don’t know how you manage it all.”

But the truth is, they don’t know how they manage to keep it together, either; it’s just that they don’t have a choice. They fight because their children need them to fight. They keep going because if they don’t, who will? They learn to put their own needs and wants aside because they value the life of their child much more than their own.

When children come face to face with the Goliaths of disease — cancer, heart defects, cystic fibrosis, brain injuries and many more — it’s their mothers who gather the stones that this small child will use to fight the fearsome foe. We often revere the doctors who take care of these little ones, and it’s true, they are heroes. They make the stones so that we have weapons with which to go into battle. But often, there is a forgotten hero: the mother who gathers each and every stone, places it into tiny hands, and stands by while her baby takes his best shot.

Mothers who take care of children with serious diseases don’t have the same luxuries that the rest of us have. Every parent carries the nagging fears: What if something happens to my child? Will I be able to give my child all the things they need to help them live a happy, healthy life? How can I help them realize their full potential? And perhaps it all comes back to this question: Am I enough? Am I enough to give my child what she needs?

But, for mothers whose children are healthy, we can put those fears on the back burner. We don’t often have to look that scary monster in the eye and face the reality. We can hide our heads under the covers and pretend that as long as we can’t see the monster, he can’t come and get us. For mothers who are battling a child’s illness, that’s a luxury they cannot afford.

They are forced to face the monster head on, and their monsters look like this:

• Explaining to a child why they must face yet another surgery that will bring  incredible pain.
• Holding frail little hands as they vomit and lose their hair and cry from the pain and frustration of chemo and explaining why the medicine seems so much worse than the disease.
• Navigating the fine line between protecting the health of your medically fragile child and allowing them freedom to experience the joys of childhood.
• Grieving the loss of the child you envisioned yours would be and coming to accept the reality of the one you have.
• Cradling your baby in your arms as his worn-out body takes in his last breath.
• Managing the guilt that you carry for so much of your time and energy being focused on your sick child, knowing that your well children need you, too.
• Talking to your child about the reality of death, knowing that you would trade places with them in a second if you could. But instead, you’re faced with the heart-wrenching task of letting them go on before you.

These are just some of the burdens that the mothers of sick children carry. They carry them around every single day, and the weight is heavier than you and I can possibly know. What is astonishing, though, about this thing called motherhood is that somehow, someway there is still incredible joy. Their pain is deep, but their joy runs deep, too.

They are faced with the harsh, unfair realities so they’ve been forced to clarify what is truly important to them. They know that the most precious parts of their lives may not be around forever, so they’ll appreciate every moment. Their child’s illness has given them a higher calling, a purpose in life that is beyond any desire they’ve ever had. They know exactly what they’re fighting for.

For the rest of us who look at these mothers and think, “I don’t know how she does it,” know this: It’s not their abilities that are superhuman, it’s their love. It is this intense love for their child that pushes them out of bed every morning and forces them to keep going, no matter what odds are stacked against them.

On this Mother’s Day, look around at the mothers who are fighting for the lives and well-being of their children. Let them know you recognize that you can’t possibly understand what it’s like to walk in their shoes, but you know enough to appreciate every single step they take. Share in their hopes, their joys, their triumphs and their disappointments. Listen and learn: Their hard-won wisdom will take you far.

But most of all, love them. Love them well because they have loved others well.

http://www.kevinmd.com/blog/2014/05/remember-mothers-sick-children.html

2 years ago Yesterday, life as the Hancock's knew it changed

2 years, 2 years, 2 years. Two years ago seems so long ago. Yet the emotions of it are at the surface. The emotions are so real, so hard, so just there. I am not sure if it is because Carson has been sick and that is is kind of what started the journey 2 years ago. I remember the ENT telling  me about his open heart surgery and saying he hasn't ever seen this. Dr. Fluchel telling me this ins't cancer. If anything it was a-plastic anemia. I will never forget the look on his face, the way he hung his head as he walked in. I will never forget holding my son's hand as they told me it was cancer, I will never forget the world spinning, and just wishing I was going to wake up and it was all just a awful dream. But it wasn't. He had me call my husband; and then left since we wanted to wait till Brant could be there to talk all of the details out. I then called my mom, and told her; she asked me if she should leave work, the shock was so much. Then called my mother in law and said to hurry down to the hospital. That hour of waiting for everyone to arrive standing by the window; looking at my son; wishing I could just escape. I didn't realize the full effect of what was about to happen, the changes we would make with in our family; and the pain, and illness my son would endure! 

This was him heading to surgery the day after he was diagnosed! I was scared; I held him so tight that day. He made me laugh wearing the glasses. It reminded me of the Movie Big Daddy. :) 

This is him now! still fighting; still sick sometimes. But he fights with a smile, he fights with everything, and even makes us laugh along the way. 

Cancer I hate that you have taken so much from our family! I hate that mother's day is now a sad day for me. But know that while you may get our family down, and you may take some of the best things in life away; you will not win, and we will come out on top, stronger! 

While we were stuck in PCMC that first week Carson watched Cars OVER and OVER and OVER again, I was so sick of that movie, but it made him feel better, at night I would wake up to "Life is a highway" every time it was played. We had the DVD on contentious play-back because if he woke up he wanted to watch it. I guess it was a sign, I heard the song today, and burst in to tears, I have heard it a 1,000 times since and never has it been so emotional, but listening to it just brings back pain, but also after listening to it, the little lyrics are true. Life is a Highway, and believe us cancer Carson will do it his way! 

"Life Is A Highway"

Whooo umm yeah...
Life's like a road that you travel on
When there's one day here and the next day gone
Sometimes you bend, sometimes you stand
Sometimes you turn your back to the wind
There's a world outside ev'ry darkened door
Where blues won't haunt you anymore
Where brave are free and lovers soar
Come ride with me to the distant shore
We won't hesitate
To break down the garden gate
There's not much time left today

[Chorus:]
Life is a highway
I wanna ride it all night long
If you're going my way
I wanna drive it all night long

Through all these cities and all these towns
It's in my blood and it's all around
I love you now like I loved you then
This is the road and these are the hands
From Mozambique to those Memphis nights
The Khyber Pass to Vancouver's lights

Knock me down get back up again
You're in my blood
I'm not a lonely man
There's no load I can't hold
Road so rough this I know
I'll be there when the light comes in
Just tell 'em we're survivors

[Chorus]

Gimme gimme gimme gimme yeah

[Chorus]

There was a distance between you and I (between you and I)
A misunderstanding once
But now we look it in the eye

Ooooo...Yeah!

There ain't no load that I can't hold
Road so rough this I know
I'll be there when the light comes in
Just tell 'em we're survivors

[Chorus: (x3)]
Life is a highway
I wanna ride it all night long
If you're going my way
I wanna drive it all night long

Gimme gimme gimme gimme yeah

I am not sure why this mother's day was as hard for me as it was. Some of it I am sure has to do with the fact, that Carson has had a cough for weeks, and ENT doesn't know what to do; this is how it all started, this is how we began the whirl wind, his airway seems to be the first sign of many things. I will talk to ENT tomorrow and see when they will be scoping him since they need to see what/how much damage has been done, and if there is something we can do, at least to get him to stop coughing. I don't think I will ever forget sitting in the ER and Dr. Mier coming in and explaining the compared to open heart surgery to me because he was having so much trouble breathing; but also the Dr. wasn't sure what the answer was. I feel like we have one foot back in that boat; no doctor seems to know "why" or they tell me " he isn't text book". I long for normal, what normal I am not sure but a simple normal would work for now. I am glad today(mother's day) is over so I can hopefully pick up my pieces and move forward; continue to fight, and not let Cancer take anything more.