Chemo 1/6/14

Carson had chemo today, he had IV chemo in his port and then also in his spinal fluid(LP)! While he was sedated they performed a EMG, the results show no improvement. We were hoping for improvement. There are 2 possibilities of why his legs hurt, and while we were hoping to get answers today, we will have to wait till June when they perform the test once again. Either way the doctor said a normal child on the scale is at a 17 Carson is barley at a 5; she feels this will most likely be permanent and will possibly effect his walking as time goes on. There is some genetics testing they would like to do, but it will take time and lots of red tape with our insurance to get this approved. So for now he will continue to deal with the leg pain and we will manage it like we have for the past year. Carson is such a non-text book child it is hard to navigate through what is happening.

I am of course heart broken. How much more is a child/mom/family supposed to take? How many different things can be going on with one child? I know I shouldn't be complaining, there are worse things that can happen. but I am; I just want to not deal with cancer, or medical issues. I just want to be normal, I just want to be able to go swimming and not worry, about germs. I want to take my kids to Jump on it places, with out having to worry how many kids are there, and be on the watch for the kid wiping his nose and avoiding that child. I want to be able to take my family up in the mountains 4-wheeling/camping for a weekend, with out the worry, or fear of fever. I want to travel. I wish we could just do the normal everyday things that most families do, with out the FEAR of what cancer has brought to us. I wish we didn't have to choose what bills we pay each month, it is like playing the lotto, put them all in a basket and pull out the lucky ones that get money each month. It is just stupid, and annoying, and just plain pisses me off!

"Childhood cancer is NOT happy kids with sweet shiny bald heads and brave smiles. Childhood cancer is NOT something that is given to kids because they are strong enough to handle it. Childhood cancer is NOT sunshine and love. Childhood cancer is scary. Childhood cancer is dark. Childhood cancers ruins families and lives. It is probably one of the most stressful, heart wrenching things in the world. The way childhood cancer is portrayed, is not accurate." ~ Maya Thompson

I am guilty of this, I am guilty of hiding the harsh reality of what it really is. This weekend while I was talking to my husband, he didn't understand why I was so worried, and upset about today. I finally turned to him and said " you didn't have to stand outside the door and listen to your child scream, and know that you can not go in there, and just hope that it is over soon" Because he is hard at work supporting our family, and making sure we can have a home, and things we need, he doesn't experience many of the emotional scares that I do, because I am the one holding him down when he refuses to get his port accessed, I am the one holding the throw up bucket at 3AM, or rubbing his legs till he falls asleep. I am the one that is talking to the doctors and answering all the hard questions, and listening to all the details of the plans of action.  I tend to hold all the "bad" in, Why? Maybe because it hurts too much to speak it out loud again. Maybe because if no one knows, they won't ask questions, and I don't have to re-visit it again? Maybe because I feel like I am protecting everyone else by not sharing all the heart wrenching, dark, scary, awful things that happen. Why? I don't  really know.  

I do know Childhood cancer has changed our lives, it has changed Carson, he thinks taking 14 pills at one time is normal. Blake thinks taking medicine is normal and wants to take it as well. I worry about everything. I have to clean like a mad woman(even though my house always seems to be messy), Brant has to work many hours just so we can keep our head above water. While I know Brant and I have made the changes, because no matter what it was we would give it up to see our child come out on the other side, it still sucks. We have the right to be angry, mad, upset, and say that cancer SUCKS. While I know many don't understand the reasons why we do what we do, why we make the choices we do, they are our choices, and to tell the truth I don't think half the time we really know. We do know that we are going to fight, fight like hell, give it hell, give it all we have. We will not back down to cancer, or the side effects it is causing. We are going to try to be as normal as possible; as hard and as challenging as it is we are going to do it; what other choice do we have?