Sometimes we get scared....

At 12:30 AM, we drove to the hospital.  Christian's breathing was labored and fast, and he had only one wet diaper in a day.  He also needed another feeding tube placed as his came out when he threw up.  Upon arrival we found out that Christian was running a temperature, and his oxygen saturation was lower than the normal at ninety-four percent.  We also learned that his platelets were at a low 14,000.  Everything was going okay until the NG tube was replaced... The Doctor said the nurse probably hit a blood vessel in his nose which caused his nose to bleed into his stomach, which made him throw up a cup of blood.  No exaggeration! It was probably one of the worst experiences of my life so far.  I'm not scared of blood, or grossed out, but I am scared when my child throws up blood...a lot of blood.  All I could think was that my son was dying right in front of me, and how he was going through hell.  I instantly felt sick and started panicking, I can't describe how it felt really, but just imagine a time when you felt like your world was ending and multiply that by ten.  I was seriously scared....Chris, my husband, was really scared too, we kept looking at each other, knowing what the other was thinking, but trying to stay calm.  Everything is OK now, but it's not good.  We are sitting in the hospital bed watching 'The Mickey Mouse Club House,' and it's quiet.  Christian hasn't been talking that much lately but it's not hard to tell that he feels like absolute crap.  I think he wants the silence, talking is too hard.  So for now, we will continue to sit here, hand in hand, and try to forget that radiation starts again in the morning.

Life doesn't choose favorites.

  

                                   

I just held my son down while he got a feeding tube forced through his nose and down his throat.  The nurse asked me if I wanted to leave the room.  I don't understand how a parent could leave their child when they needed them most.  I'm not squeamish, but it wouldn't matter anyways.  The last thing any child needs, sick or not, is for their parents to leave them when they are scared.  This is the first time Christian has needed an NG Tube.  He's only eaten half a hot pocket in a week so it's the best option to keep him "healthy." The chemo will make food taste metallic, so he probably won't like a lot of his favorite foods now. He kept screaming after, and even tried pulling it out, but he seems a little more at peace now.  He didn't like me very much for a few minutes, but then he motioned for me to lay next to him, and he took my hand.  It's hard to look at him like this, and even harder to imagine how he feels right now, but it makes it worth it when I feel his side where his tumor started sticking out and can already notice a difference in size.  It gives me a little hope...although that probably makes me foolish.   I was told that Christian's chance of cure is one percent, and it's only one percent because the doctor didn't want to give up hope that something might work.  I will not give up yet, he's not.  I still can't believe that I created this beautiful little soul, and that he's going to be taken away from me.  This isn't the life a parent wants for their child, or themselves.  You think that nothing bad will ever happen to you until it does.  Life doesn't choose favorites.  It's been a hard road to travel, but I wouldn't go back and change anything.  He's my miracle....I hope he knows that.  

Why?

I've been contemplating writing about Christian's journey for some time now, and since I can't seem to talk much about him without wanting to cry, I figured writing would be a little easier.  If you don't already know me, then you should know that I'm writing about my son, Christian.  Christian has been fighting cancer for almost three of his four years of life.  He had a great prognosis when he was first diagnosed with a stage three Wilms Tumor.  Ninety percent.  That was his chance of being cancer free for the rest of his life.  And he even had a favorable histology!  Now, almost three years later, his tumor has grown back for the third time.  And it keeps growing back faster and faster each time.  From November 2014 to late December 2014 a eleven by five centimeter tumor grew in his chest while receiving treatments. In November, the tumor he had in there was removed, but I guess cancer has a mind of its own.  Now, he sleeps soundly, just a few feet away from me in a hospital bed.  He just received intensive chemo for three days.  All I can do is be here with him.  I sit in on a couch bed next to the window and cry.  Two members of the PACT team just came in to talk to me.  They gave me a brochure and want to set up a time to talk about Quality of Life.  Those words make me cry....when I see them, or hear them. Who would have thought that at twenty-one years old, I would have to be making decisions about my son's quality of life?  My heart breaks for him because he's too young to know what's happening to him, he feels bad all the time and doesn't understand why.  Sometimes, though, I think it's a blessing in disguise because he doesn't have to be scared about dying.  But I'm scared.  How am I supposed to live without my son?  If I'm being punished for all my mistakes, why does he have to suffer? Why are there no answers? Why? If there is a bigger picture, I don't want there to be.....I just want to be here with him, forever.  I don't know how Christian, and other kids like him do this.  How do they stay strong? How do they have hope?  I don't know anything anymore, except that those kids are the bravest people in the world.