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. 

Long Over Due Update...

Carson had Chemo on Nov. 6th. We started the awful steroids. It was rough for a few days! 

I have never got to snap a picture of his chemo, but I was able to snap a couple. It is odd how something that you are putting into your child comes in 2 plastic bags and the nurses use gloves and gowns to put it in! 

Steroids cause him to not be able to sleep. So for 5 nights we stay up and try our best to get him to sleep. 

We got to go to a Prom for a Sweet Girl Brylee. She does not have the best diagnoses; and will earn her wings soon. We went to a hotel for the Prom. And we were surprised to find Karl Malone there. he played for the Utah Jazz for over a decade. Carson called him Daddy's basketball man! :)

This time last year we were in the thick of it. It was rough. Crazy how one year can change so many things. WE are in such a better place this year. 

Time To CELEBRATE GOOD TIMES! 

Three years old. is he really 3? 3? It seems like I just had him. Oh how much I have missed of him growing up. But this day was all about him. And he ENJOYED it and Carson helped him have a "good" day. :)

I was so happy to have Blake have his day! A day just about him! 

I was able to help swab this 200 packets to register for the Bone Marrow Registry. 200 people that COULD be a match to another child out there! if you want to become a match, you CAN save a life, and it maybe a life of a child fighting cancer, and our family may know them. Because we are in this awful "club" of cancer, and will never get out...So we embarrass it and will do our best to help others through out their journey while leaning on them when we need. 

Now for the BIG update!

We are going to Children's Hospital of Philadelphia. This was not going to happen till January. But; Carson has had some struggles breathing. He has stopped breathing a few times... one when we were in the car, My heart can not take much of him not breathing. Before It was a fear that it could happen, he has not stopped breathing since he was an infant. So I had become Okay with how he was and comfortable you could say; but I was reminded not once, twice or even three times... but 5 times in the past 2 weeks how scary and fragile life can be! 

So Why are we going to CHOP?  

CHOP is the BEST hospital in the country. It has doctors and specialist for airway issues that we just do not have here in Utah. When talking with our Pulm out here, the first of Oct, he said it would be a benefit for Carson to be seen out there, so had planned to go in Jan; even had dates of Jan. 16 to fly out.  and get testing and such done! But because of his breathing episodes we are going much earlier. 

So what will be doing in CHOP?

They will be doing a list of things. We will see 6 new doctors. 6 more to add to our list of 5 here. We will meet with doctors when we first get there. They will go over things, and ask questions, and go over his scans that we have done here. They already have got his records, and all the notes and such from here. 

Our hope is Carson will be able to start a medication that will harden and strengthen his soft tissues, it is used all the time on adults, but CHOP is one hospital to use it on kids, or PEDS. They are not sure how a child's body will respond to it, so it is a medication we will have to watch and monitor closely. In order to have this medication prescribed; we first have to have a Lung Biopsy and multiple airway biopsy's done. They will do culture testing, and some other tests while we are there. It is a long list of things, to do in a short visit. CHOP was super accommodating and fitting us in on short notice, and also getting all the tests and such done in a short time! 

We have been blessed to have so many help us! People reached out to help that I am just overwhelmed with the support.  With out each of those who have reached out to us, we would not have been able to make it out there in such a short time, and right before the holidays. So THANK YOU so much to each of you who have helped us. It really does mean so much to us; and it is not just the money or the donations that mean the world to us; it is the support; knowing we have an army behind us thinking of us, and helping us cope, and chug along this long road of not only cancer; but now his airway. 

So Next month we will have CHEMO... and then a few weeks later head to CHOP! 

Another LP down...

We were at PCMC for 2 days this past week. One for a LP for them to remove spinal fluid and replace it with Chemo. He gets these every 3 months so it is nothing new to us. The next day we had a MRA. This was requested by CHOP and we were hoping that it would show he had a blood vessel wrapped around his bronchial tube. It didn't. If it would have shown that it was an easy fix. We do not have a clear plan, PCMC here is working on getting the medication needed approved, and CHOP is working on getting all the ducks in a row, before we go out there. They are working with all 8 doctors on their team and our insurance to get everything in line, in case PCMC can not approve the medication needed. I think his airway issue is causing more stress than his cancer! The unknown is hard. All the doctors have told us they are not sure why he has not out grown this, it is rare to have it, and even more rare to not out grow it by age 3 or 4. His cancer complicates it as well. 

Make a Wish Utah puts on a Halloween Party each year! We are so happy to attend it. Carson loves to go! This year the boys picked out their own costumes. Blake was Goofy and Carson Scooby. :) 

We were able to go to Moab for a night. I had to take a foster boy to court and we made a vacation out of it. They boys LOVE LOVE LOVE vacation houses, aka Hotels, especially if they have swimming pools. They were out cold by 715 and I enjoyed some me time while they slept. 

Emotions...

I was humbled once again tonight. A friend from High School Reached out to share Carson's story. I share his story openly and proudly. Because for one it is cheap therapy :), but the most important part is to raise awareness  Before he was diagnosed I didn't know how many kids got cancer. I didn't know how many families were effected. I wish I did. I remember walking through the halls of PCMC and always being thankful we didn't have to go to the "4th" floor. We were lucky. He only had a airway issue. God had other plans for him. The day we found out is burned into my memory. Having other reached out to me in my families time of need, and our time of trial, is humbling. I am thankful for each and every person who reaches out, even just to say I am thinking of you. Those get me through the hard times. Those who have reached out to help financially  you don't know how much it means. The costs of cancer are overwhelming. I am often asked how we manage. With lots of prayers, and help from others. One day I will be able to not only give back what has been given to us, but give so much more. Because there will be a mom sitting where I am now, and I will be able to help her get through it, just as others have helped my family. 

Carson "Tuff Boy" Hancock was born Friday, February 13, 2009. He spent the first 5 days of his life in the NICU; with a rare airway condition called Bronchial Malaysia, causing his airway to be weak and narrow. His Father (Brant Hancock) wanted to name him “Tuff” because he was a very “Tuff” baby from the very beginning! “Tuff Boy” stuck as Carson’s nick-name. Carson’s first surgery was when he was just 6 months old and he has since had 5 surgeries for his airway. You would think that would be enough for one little boy to endure in his very young life, but on May 10th, 2012 our sweet little 3 year old “Tuff Boy” was diagnosed with Acute Lymphoblastic Leukemia. Within hours of the diagnoses he was rushed into surgery and immediately started chemo therapy. His Father and I were paralyzed with grief! Why Carson? Hasn't he already been through enough? What if he can’t beat it? We feared the worst!

Mother’s day that year was spent in the hospital with me holding Carson and my own Mother holding me while I cried my heart out for my sweet little boy. The next morning I knew we had to fight! Not only fight, but fight with the best attitude possible and reach out to as many people as we could to gather support! I would NOT let cancer get the best of me or Carson. Since that Mother’s Day, Carson has had 15 Lumbar punctures to receive chemotherapy directly into his spine, as well as 2 surgeries on his airway from his original condition at birth. Carson has endured countless pokes, surgeries, hospital stays, horrible medications and many, many sick days - and yet he continues to fight and be happy and act like any normal 4-year old. He loves to play and recently participated in the Mutton Bustin Competition at the rodeo. Carson will continue to receive chemotherapy treatments until July 2015! That will be 3.5 years of treatment. 

The hardest part of this journey is that people don't realize he is sick. He acts normal. We try to make him NORMAL. We don't want cancer to take us over, we don't want cancer to take more than it already has, and will. He can go from being fun, loving, sweet boy and 10 minutes later have a fever of 103 and we are off to the hospital. 5 days each month he takes steroids, this is the worse part of the journey; he doesn't just take a small amount he takes a lot. If you have ever had to take steroids for anything you know they come with hot flashes, night sweats, mood swings, and just plain grouchy. He has all of this times 20! He eats till he can't chew, he has mood swings that put Toddler and Tiara show to shame. I hide his brother in another room because it is too hard on him to not understand why yesterday his brother was fine and today, he is a crazy person. He struggles to know what is happening, and has a look of lost in his eyes. Those 5 days each month I dread, I pray more in 5 days than I do any other time in the month. I don't share these details with many, for one it is hard for me to relive them, I barley survive them. 2- I hate to drag everyone on a sob story, to me that is letting cancer win. We live each day, because tomorrow a blood test could and can change our whole world. A simple cold, can put us in a whirl wind for days, weeks, or even months. 

These are my two favorite quotes... 

"“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.”-Lance Armstrong

When someone has cancer, the whole family and everyone who loves them does, too.-Terri Clark

Him having cancer isn't just about him. It has effected our whole family, and friend network. Yet Kids have hope! When you look into their eyes you know they have hope. When you believe there is hope, and a reason God has chosen each of us for the journey, there is hope. 

I often wonder if I would do it all again. When I think about the hard times I think there is no way. But when I see that smile on his face, that laugh that can make a bad day GREAT. YES I would. I would do it all again. I wouldn't change a moment. It has shaped our whole family. It has given us the most important lesson this far in life. I hope these are the hard lesson we are to learn. 

We walked, for those fighting, for those who have fought, for those who earned their wings, for the moms, dads, sisters,brothers, and extended family who live with a cancer diagnoses! No child should have to suffer through what so many children do!

The craziness continues

We got an offer from RMR raceway to go out and let Carson be the Pace Car driver! He loved it! He thought it was cool to ride in a fast car! He enjoyed the races and it was great to not worry about him being around germs and such. It was a much needed night out! 

Both the boys were AMAZED by this cup in the infield of the race track, they wanted to know when they could get a drink! :) silly boys! 

We had a family BBQ with the Hancock's. We don't see them as much as we would like, so it was nice to catch up with them. We got to meet their new cousin Tucker. He is cute the boys loved him. 

In their camo ready for Hunting, even though we are not able to go! 

We hope in 2 years we will be able to buy another trailer and go out hunting, but for now we will just pretend. 

We have been doing better. His cough is still here, and we still do breathing treatments some nights. the air is changing and is dry, we now have 2 humidifiers going in our house to help.

  Carson has been going to pre-school, giving me time with just Blake. It is nice to just be with him, since I spend a lot of time with Carson doing medications, doctors visits and such. 

We have been blessed to have a few people donate to our family, many of you came out to eat at Chili's. Every penny helps, as we pay so much out of pocket, plus the travel to and from and the unexpected ER visits that seem to always pop up.  It is a blessing to have so many help us. I can not wait till we are in the position to give back to others. It is a humbling experience to have other help us. 

Fighter!

I have hear a million times to be strong!