Dear...

Dear Carson,

You have now been on this journey of kicking the shit out of Leukemia for 6 months now. It has been a rough road for you. I wish each day that I could take your place and go through all of this for you. I am sorry I have had to hold you down countless times to have you poked, finger pricked, even to get 6 days of shots, or even just to get your blood pressure taken. I am sorry that you feel crappy, and some days just want to lay around and not do much. I am sorry you have lost your hair. I sorry you are so young that you do not understand why this is all happening. THANK YOU for being tuff, and helping me get through all of this. Your smile melts my heart.  Thank you for not complaining all the time. Thank you for being brave even though you know not so fun things happen in that hospital. Thank you for laughing with me on the hard days and letting me hold you when you aren't feeling well.  I am scared for you to start this next phase, I know it will be rough for you; and you will not understand why you don't feel like you should. I pray you will breeze through this and not remember most of it.  I love you to the moon and back, even though it is high. Love, Mom

Dear Blake,

One day I hope you will understand just how amazing you are. There is never a time that I can't count on you to pull a face, make a noise, or just do something that will make me laugh(even though sometimes I have to laugh in my shirt so you don't see). I am so sorry you have had to travel down this awful road with Carson, Daddy, and I. I am sorry that you get left with random people so I can take your brother to the hospital, it breaks my heart. I am sorry you don't understand why your brother is fine one day and the next you can't look at him with out him wanting to hurt you. I am sorry that more of my attention gets directed towards your brother. I am sorry that I can't change all of this. I am thankful you are a goof ball, and can make me laugh. I am thankful you are able to go with the flow, and play by yourself on hard days. I pray that the next few weeks you will understand that while it is not fair, I need to take care of brother, and I may not be able to give you much attention. I also pray that you will not remember most of this. I love you so much. Love, Mom.

  

 Dear Brant,

I am sorry this has been so rough on you. I know in your mind cancer = death. It isn't fair. I am sorry I have no time or patients to talk to you like we used to. I am sorry you get most of my anger. I am sorry that we never have time for just us to go out. I am sorry that our child has cancer, and that I can't fix it like I always have. I am thankful that you don't mind taking the backseat, and know that the kids are everything to me. Thank you for on bad days taking the kids for 5 minutes so I can clear my head. Thank you for doing the crazy things I ask, and just going with it :). I pray that the next 6 weeks we can lean on each other like we have done for the past 10 years. I pray that once we have made it through this, we will know we can make it through anything. I love you so much. love Sara

 

 

 

His hair is gone...

If having a rough few days wasn't hard enough, his hair is now gone.  It was falling out, and we had hair everywhere. We made it 6 months with it, so it was kind of a shock to us that is now gone! But I must say I LOVE his head!

I love my tuff boy! He is so brave and such a trooper. No matter what is thrown at him he goes with it! He amazes me. Last night was rough the pain medication didn't take his pain away like it has in the past, it took 2 doses and his heating/massage mat to get him to fall asleep. We had a special little girl stay the night with us, Gabby is "cancer buddy" and is amazing with him. she does what ever he askes her, and will sit for hours and watch Mickey, gets him water, really anything he askes she does! :)

Rough

Things have been rough this past week. With going to the hospital 3 times a week, it has worn on Carson and I. The medication has caused him to shake as if he is cold, and also have Rosy red cheeks and horrible tummy aches. We had a trip to the ER on Saturday to make sure there was not anything more to it, like infection or such. A short 2 hours later we were able to go home. He has 2 more sets of shots, Wednesday and Friday. We will then enjoy our weekend. Starting next week we start the next part of this phase of treatment. He is still in delayed intensification, with 4 more weeks to go.

Day 146 and counting...

This post is backwards... the pictures uploaded backwards. So we will start with the good!

We were able to go to SCHEELS the new sporting goods store. Carson wasn't sure he wanted to leave the house but enjoyed it once he did. They had these cool "car carts" to ride in.

They also have a Faris wheel, that some how my mom and I got stuck riding once again... we both hate Faris wheels but get suckered in to riding them with Carson and Blake. It was worth it since they both loved it.

While we were at the hospital Carson turned off the lights and laied in the wagon to "sleep" he has a new thing with being upset when people wake him or are noisy when he is trying to rest or as he calls it "sleep"

He loves the Spider man and Superman on the 3rd floor of the hospital. He likes to take the stair to go visit them. On good days we do. 

He has to have a shot in each leg Monday, Wednesday and Friday for 2 weeks. He has 2 down are 4 more to go. After each one we have to wait 1 hour in order to make sure he has no reaction to the medication. He likes to nap during this time. 

He loves to ride his 4-wheeler. I did not think he was old enough to ride it, but he is. He loves it and even on a bad day it brings a smile to his face! 

 

On Monday September 24th, 2012 Carson had antaflacic shock from one of the Chemo medications he had. We had to stay 24 hours in the hospital. He did great. We then had to wait for our insurance to approve the $90,000 alternative medication to come out of Canada. We WON THE LOTTERY. They paid for it! That is why he has to have the shots in his legs 3X a week for 2 weeks. We were very happy they covered it, we wanted to make sure we kicked the crap out of cancer. Carson continues to amaze us, with showing us that no even cancer can keep him down. He rolls with it so well. Though he is sick, and has bad moments, he makes the best out of each day. His leg pain still concerns us, but the doctors are aware and watching it. They do not want to decrease any treatment until he can not take it anymore. I do agree with them, I want to give him as much as we can so he never has to endure this ever again. They said that the "vinc" chemo causes like falling asleep pain in your legs, feet and hands. Carson often complains of his legs hurting, we rub them and use heat to make them feel better. Some days they hurt so much he will not walk and crawls on his knees. It is sad and breaks my heart, but even with leg pain he pushes on. He truly is a Tuff Boy, and we love him so much!

Here goes the next 10 weeks...

The next 10 weeks will be hard for Carson. Hard for our whole family. I pray he will not be in pain, or too sick to still be a little boy.  He has been so brave. The boy is a pro at going for treatment.  He helps the nurses give him his treatments, and is always willing to show them the dinosaur that lives in his mouth(aka when they are checking for mouth sores he grawls at them super cute) The nurses love him and always say that he looks great, and that is such a "BIG BOY" something I have heard from day one. He was never a "baby" he has always been our "big boy" tipping the scales and always being in the 90% on the charts.

Mickey Rode on his lap the whole way to the hospital. He had to share his blanket with Mickey.

 

 

We asked the Child Life Specialist Rachelle(who is amazing by the way) to let Carson play doctor and give Mickey a port. He was so excited to do so, and was happy to give Mickey medicine and also take his blood. :)  

Carson no longer likes to wear shoes, he prefers to wear slippers, Lighting McQueen ones to be exact. He loves them.

I ran to Costco to get a few things, and Carson saw a LIFE SIZE Minni Mouse and about did a head dive out of the cart to get to it. I carried it around the store till I could find more. Thank Goodness they had Mickey. Both boys got one and both of them LOVE them! They are so happy to play with them and each sleep with them. We still have the smaller one to travel with us to the hospital and such, but who wouldn't love a life size Mickey.

Also Uncle Travis and Uncle Shawn got Carson and Blake a 4-wheeler. 

Carson LOVES it.

 

Both boys were very excited for it. I hope he feel good enough to ride it at least a few more times before it gets cold.

 

This is now our motto! We may no understand everything now, but we are smiling through the tears, and pushing through the hard times! I don't ever think I will "make sense" of why children get Cancer, but I do know that there is a lesson to be learned. In my heart I know Carson will beat this.

Put a smile on....

I am forcing a smile in front of my kids. Inside I scream because insurance companies are annoying and have choose what they will and will not cover for his treatment. Really? I am pissed, angry and more hurt than I have ever been. Our child is sick, and you want me to call you and have you explain WHY you are not covering it on top of dealing with him being sick? No this is not how it should be! It is not fair. But what else can I do but put a smile on my face, because if I don't my kids will see I am upset, hurt and angry and they don't need that. They are dealing with enough. Carson going for treatments and being "tuff" about the whole thing. Blake going with the flow since what other choice does he have.

 

Really when you look at this picture, he could barley hold his head up. He was so weak. I am an out spoken person when I can handle dealing with one more thing, I will do whatever is needed to get awareness, and more money for research to find a 100% cure! If we find a cure for one Cancer, we can find it for all of them; I am starting with Childhood Cancer.  No kid should have to be "sick" and no parent should have to face the fears that Brant and I are.

At least he is able to be a little normal. He enjoys riding his bike but always has to have Mickey mouse with him. He gives Mickey Mouse bandages, and always says Mickey's legs hurt when his do. He loves Mickey. I am thankful something makes him as happy as Mickey does. You would never guess this kid is sick. Our next phase of treatment will be more intense and not something I am looking forward to. I am also thankful he doesn't fully get he is "sick" and all the fears that could Intel.

10 more days for this "part" of treatment

We are in a part of treatment called Inter-maintenance 1. In just 10 short days we will finish this part of his treatment and enter a phase called Delayed intensification. Not a part of treatment we are looking forward to. We have been so blessed to be able to be somewhat normal and do things that kids should get to do. Not all kids with Cancer are able to do so.

 

I wanted to get a picture of him with his Port Accessed. To show him later what it looked like. This is his "I am going to kick Cancer's butt" face!

 Here are some pictures we took up the canyon; Monday after treatment. He enjoyed going for a ride in Daddy's truck and watching the river.

 

Before we were able to go up the Canyon Carson and I made the journey to PCMC. We had to take Mickey Mouse along with us. He is driving me nuts with Mickey Mouse. He watches it at least a few times a day if not all day(on bad days). It makes him happy so I deal.

We were scheduled to go through the OR so we had to be checked in with the OR at 8am. Carson knows when we go there he can play with the cars. While we waited Carson found a friend who had down syndrome and a trachea tube. While his mom was suctioning out his tube Carson reached his hand out and told him "it okay". The little boy smiled at him, and they held hands and play together. It was the sweetest thing I have ever seen. We had to leave soon after and head up to get "treatment". They then changed our plan and had us go through the RTU; much easier for Carson to go to the RTU since I am able to take him to the room and hold him while he falls asleep. I am also able to go back to him much quicker than if we were in the OR. But since we we were moved to the RTU it meant we had go back up stairs for treatment; Carson was no happy about this at all. But soon calmed down and fell asleep while he got his chemo. I also talked to the doctors about using essential oils to help Carson with his leg pains. After talking to a few doctors, we came to the agreement that we will not use essential oils to help. Some studies say that it could make the chemo not as effective, and that is not a gamble we are willing to take. So we increased his doses of pain medications, and will continue to use a vibrating chair mat and heating pad to help manage his pain. We are 2 days out of treatment, so far he has not been in too much pain. He acts silly after getting a "full" dose of pain medication, but I would much rather have a silly child than a child in pain.

 

We continue to receive so much support from family and friends. We are more than thankful for all the support.